Wednesday, October 23, 2019

Comments by Joanna Care

Showing 557 of 557 comments.

  • “Focusing on socioeconomic factors won’t change anything now” – tell that to people working zero hours, full-time and still needing state top ups, people using food banks, people struggling to find cheap enough rent. It is socioeconomic factors which can help drive people into psychiatry, drive people back, or keep them there.
    You might as well say there is no point in ever addressing poverty

  • Thank you for writing this Timothy and for engaging with all comments.

    Open Dialogue are partly selling themselves on Whitakers argument on getting people off benefits (the much promoted 75% back into work/ed within 2 yrs which isn’t as straight forward as much that will politically appeal).
    OD is apolitical or at least apathetic when it comes to politics and the current landscape for people in receipt of in or out of employment disability benefits, because I never see any mention of it. I sincerely hope some people will raise these questions if the Whitaker and OD ticket rests on ‘drugs = disability claims’, you will find not all psych users/survivors will buy it.

  • It’s good to see social inequality being raised because the ‘drugs = all disability payments’ is not accurate or helpful and more so at a time of rising psychocompulsion which is leaving people sanctioned, using food banks, losing their homes, or worse: https://vimeo.com/157125824

    I’m not pro-drugs (but I respect anyone’s real choice to take them, I say ‘real’ because I acknowledge that it’s mostly not a choice). Employment is being touted in the UK as a ‘treatment’ and cure and recovery with a government ‘Behavioural Insights’ department which designs programmes pushing CBT and DBT to force people into workfare or work with the ‘correct’ attitude (think Ehrenreich ‘Smile or Die’). Bear in mind the UK has more vacancies than available jobs and mental health service users have the highest rates of unemployment and the reasons for that include meds but are not solely located in that. We have a million people in the worst and harmful employment – zero hrs and people in full-time minimal wage work or 2-3 jobs where they cannot make enough money to live. We have a housing crisis, the level of homelessness is palpable, and £9.3 billion in housing benefits is being handed directly to buy-to-let multiple homes landlords, this is corporate welfare, alongside corporations paying so little their employees need Working Tax Credits, this is yet more corporate welfare.
    The welfare system is causing systematic poverty, distress, READMISSIONS, and suicide on an unprecedented scale. The current system has dispensed with flexibility if a person can work one week then might not be able to for a while, or may only be able to do limited work, or is more stable with voluntary work as an outcome (which benefits charities, NHS Trusts and universities especially).
    There is in-work welfare conditionality and people attempting part-time work lose essential WTC’s the moment they lose a disability payment which can be received both in and out of work. Self-employed also lose working tax credits if they cannot secure a full-time minimum wage salary.
    Supports in education and to live have been withdrawn, mobility scooters/vehicles have been removed. The situation is very dire, there’s a lot more to the issues than psych drugs. Even if those drugs were removed all these problems would remain because they’re structural, this is what neoliberalism does, and it relies on there being unemployed/low paid people so that money can be siphoned upwards to the very wealthy and corporations – they are taking the most in corporate welfare.

  • There are some differences between AA being entirely peer run and an entire “mental health” system being peer run because that requires an awful lot more to offer something like Parachute NYC, Soteria’s etc in every single town and city, that’s a lot to build which takes money, buildings and time. There’s also the thorny issue of housing & welfare. In the UK welfare requires diagnosis therefore professional ‘validation’, whether we like or not that’s how it is. Psychiatry doesn’t exist in vacuum, other systems such as welfare require diagnosis and I’m including people in work which is part-time, self-employed, low paid, where they wouldn’t survive without the back up of a disability component tax credit or allowance and social housing.
    I’ve listened to support workers refer to failure to attend groups meaning loss of housing – housing and basic income to live should never be made contingent on participating in some form of intervention whether that’s medical or ‘recovery’ orientated. Peers workers being forced to impose recovery outcome tools such as the Recovery Star is not on, neither is it acceptable for ‘peer’ job descriptions to be mini psych professionals or be required to “maintain their personal wellness” and have a ‘recovery story’ to reel off at the drop of a hat. When peer workers are required to impose mainstream recovery interventions and measures that’s no better than being co-opted into a medical model of mental health.
    Real freedom is to not have to subscribe to any ‘model’ or philosophy if you don’t want to, but social justice needs to be at the heart of all support because that impacts on the majority.

    http://criticalmhnursing.org/2015/10/19/the-recovery-star-meets-the-unrecovery-star/

    Peer support within state run services is likely to remain less well paid or voluntary to tick the ‘co-production’ box but I think we need people working both inside and outside of the system

  • Completely agree 9, my country is in dire crisis because of neoliberal policies which are literally killing citizens and pushing people into a mental health system which is derailing. Given we have a housing crisis, a punitive welfare system (both in and out of work) which has the power to leave people destitute/homeless, even more reason why we have to pay attention to the social causes of mental distress and policies which further entrench them.

  • Reduced medication/admissions/symptoms/use of services/satisfaction with care/social network size & quality will form part of the outcomes evaluation along with the Process of Recovery Questionnaire. The questionnaire needs rethinking because it’s way too loaded and overlooks the fact that ‘recovery’ is not a concept everyone subscribes to.
    http://www.tandfonline.com/doi/pdf/10.1080/17522430903553495

  • Exactly Johnathon exactly, wouldn’t it be nice if people were not driven into hospital by preventable social issues.All people need housing, income to live, extra help if disabled, flexibility for inconsistent working ability, decent working conditions where salaries don’t need food stamps. I’m sure Americans would really like healthcare too and not fear bankruptcy from medical bills.

  • A lot.

    Of course the insured will cost more..kinda makes sense but it’s the wrong question.

    How much would it cost to make societies more equitable to help reduce the risk of people ending up in psych services. That’s the question. A Basic Citizens Income would also remove the need for welfare being tied to diagnosis.

  • I know John it is shocking when psych survivors have to rely on the work of physical disability activists and anti-poverty groups. AMHP’s estimate 50-70% of their workload is now taken up with dealing with the consequences of ESA/Atos/bedroom tax. One also relayed to me how they’ve seen people being admitted to hospital because of swallowing political messages (useless/burden to society if unable to work enough to support themselves) and in fear of losing their homes. I’ve witnessed attempted suicide in others because of social policies, ending up in MH services, yet this doesn’t seem to be of interest to MH activism

  • Hard to be black & white about it, would we stand by and watch a young person go for want of some problem solving?
    Conversely I’ve seen people OD over months till death was achieved and they were offered nothing because of being viewed as ‘untreatable’. We have physical palliative care why not emotional? (which isn’t suggesting psychiatry). Then how about the few who would state that intervention stopped them at that point and now they’re glad (whether that intervention was classed as helpful or unhelpful). I’ve come across 2 psychiatrists in my life who have been prepared to section using no forced treatment. How many non-medical and residential crisis facilities to we have for people who are suicidal (I can only think of one in the UK). I’m not arguing for psych involvement I’m just saying that for me I don’t see as black & white.

  • yep I do Steve but whenever I’ve tried to raise the shade of grey’s, or the idea of limited detention with no forced treatment or only for immediate physical life saving measures (malnutrition/dehydration/sleep deprivation) I get told I’m supporting forced drugging or zero response so I gave up

  • Well of course he modified his position on therapy – he was in private practise which I assume wasn’t for free. From what Seth previously said it seems Laings desire to see state funded alternatives and being associated with being ‘left’ irked him a lot. I guess if you believe anyone in distress is a malingerer then you won’t want to see state funded services to help them. I have no regard for him Michael, but lovely to hear you speak of Steve!

  • There were a couple of TV progs on Castle a few years ago, it was hard to not throw objects at the tv with their fixed ‘bedtime’ rules, a friend who works as an advocate cringed at the prospect of someone she was working with being transferred from a psych ward to there because apparently they had a no self-harm policy and for this woman self-harm was the only way she could cope with the severe sexually abusive trauma she had suffered.
    I read about the Henderson in the 90’s, a text by them (I’d have to rifle through boxes to see if I still have it), where it described how they treated people who self-harm. They were obliged to offer ‘good enough’ reasons to the whole community and could be thrown out because of it.
    I once visited another therapeutic community (somewhere near Ealing) by invite of a psychiatrist to see how they worked as a visitor not as a potential patient, and the morning group session consisted of analysing why someone had crossed their legs. Seriously John, there is so much intellectual wank going on in these places.
    As for the ‘mini’ TC’s we see now, the intensive groups 2-3 times a week for 2 years aimed at people diagnosed as PD, or people diagnosed with Schizophrenia/psychosis on depots who you know are viewed as hopeless cases being shoe horned into these groups on pain of being discharged from the CMHT because that’s the only longer term support on offer – and failure to ‘respond’ to medication, failure to ‘recover’ (discharged/employed) can be reclassified as PD.
    The descriptions of some of these groups sounds little more than organised dog fighting to me, whereby the therapist gets the group members to “challenge” each other and sits back and watches.
    I would not want to see TC’s as an alternative to psychiatry, it’s not just about who’s in charge it’s the whole ethos of the places, it would drive me nuts to have to spend my whole day every day doing endless groups analysing the minutiae.

    Good points @poet, yes the staff ARE in charge in TC’s/groups, just in a different way to acute psychiatry where it’s very obvious and blunt. Ditto dearth of women, any thoughts about why do you think this is?

  • Thanks Poet.

    Leon Redler didn’t impress me, I once heard him speak years ago and asked him whether he would be prepared to work within a person’s chosen frame of reference and beliefs – the answer was NO.

    Joseph Berke/Arbours – I listened to damning testimonies from a couple of people who had stayed there ie one being asked whether she had “enjoyed” her child sexual abuse.

    The Henderson and Castle “therapeutic communities” (Henderson is now closed)I wouldn’t touch with a barge pole.

    Laing and Mosher had the best early ideas on state funded alternative service provision for people in mental distress

  • Steve Ticktin and his association with Cooper and Laing;
    http://en.wikipedia.org/wiki/Stephen_Ticktin

    When he lived in the UK he was very much a friend and allie to UK activists and groups, he actively supported us. That extended to personal support, on two occasions he helped to extricate me from hospital by coming in and posing as my private psychiatrist (they must have thought I was a secret millionaire!), saying all the right things and helping me to get out. He assisted many people and not once ever wrote about it or publicised it, he just quietly did it.
    When he worked in adult psychiatry here (he wasn’t liked by the RCP) he would play his guitar on the ward and in psychotherapy he once relayed a very funny story to me – a woman who saw him would wash her hair in the sink in the room at each visit, so he figured that he should dry it, so he did! Only someone like Steve would do that! Lovely man.

  • Sera, I really like this blog, and much of what you say resonates with me as a woman who does self-injure, present tense.
    I too felt under pressure to be an ex/former ‘self-harmer’, and one of the problems with that is when people feel compelled to put themselves in that box it means there is a long way to fall on injuring again. Not only that, at what point do we define cessation? Two months or years? I see people who live with the need to hurt themselves for decades and whether they have injured or not is almost irrelevant because living with the need in itself can be distressing/disabling. Only each person can say whether the cost is higher or lower in doing it or not doing it. Something which gets missed about self-harm is it’s life saving function because it can avert suicide therefore to forcibly remove the ability to harm does indeed increase the very risks those actions seek to remove.
    Close observation, heavy meds do not remove the need, it just means that as soon as we have the opportunity the damage is more likely to be riskier.
    I refer to my own need as being ‘active’ or ‘inactive’, I don’t envisage referring to ‘stopping’. What I have learnt to do over the years is to reduce the risks using the principles of harm-minimisation.
    When I used to speak on self-harm I would in fact correct anyone assuming that I was an ex/former and point out the continuum of self-harm we are all on at different movable points. Sure there is a difference in the consequences between socially accepted forms of self-harm and needing surgical repair but again we can assist each other for preparing for that possible eventuality. It can place us at risk of psychiatry but probably less so in the UK than the US.
    I don’t go along with an addiction model, and most people who cite that have been taught it, likewise I find ‘distraction’ techniques as an intervention about as useful as a chocolate teapot. That fails to grasp the meaning/function of a person’s self-harm, and either makes the facile assumption that all we need is to be distracted like a small child from doing something naughty or we desire pain. Holding ice cubes, pinging bands on the wrists are often suggested by professionals and that would in no way replicate the physical pain of much self-injury.
    I think it is one of the most difficult expressions of distress for PH and MH prof’s and even our peers can struggle with it.
    Within services it oscillates from being treated like ‘falling off a diet’ (an actual quote to someone in the ED), to being actively violently punished (witholding anaesthesia in surgical repair/verbal abuse/demands for medical photography/but rejected from MH services), through to women being held in high secure facilities for little other reason than their self-harm.
    In terms of ‘recovery’ yes it’s uncomfortable to prof’s who view cessation as recovery and even to some fellow psychiatric survivors, you can see online forums where people will post when they last injured.
    If it’s permissible to have enduring difficulties with depression (insert preferred term) or hearing voices etc then why do people baulk at the idea of some of us living with the need to self-harm maybe throughout our lives?
    I think it’s balance as with anything else, to acknowledge the distress and be caring of that with each other, but not ‘over normalising’ to the point where of where it’s casual to the point of indifference, because we’re in danger of saying this is just like being left handed it doesn’t matter. It does matter, and we can be kind and considerate of that without pathologising.
    It can be assumed that if we’re not harming then that’s all dandy then, yet grappling with that need can be overwhelming and for considerable periods of time, this gets missed.
    Self-harm in relation to experiences which would be defined as psychotic haven’t even been researched yet the response to that is more typically fearful when it doesn’t need to be, because harming to manage voices/visions etc is not that different to harming to negotiate difficult feelings/experiences.
    We get hung up on the act, rather than seeing the person.
    Something which worries me in the UK is how in the last decade notably self-harm has become classified as ‘Personality Disorder’ and this is something we should all be concerned about because PD is far worse a diagnosis than psychosis (I say this as a person with a diagnosis of psychosis). People defined as PD get the worst of all worlds; attitude, despised, abusive treatment, rejected from any potentially helpful support, drugs, forensic detainment, groups which are like facilitated dog fights. Self-harm is not a diagnosis but BPD (ICD: emotionally unstable PD) is the only diagnosis which cites self-harm as part of the diagnostic criteria, therefore any woman who self-harms (or has experienced child sexual abuse) will attract that diagnosis. If there’s an existing ‘illness’ diagnosis then PD will replace that or be added to it specifically to ‘cover’ the act of self-harm.
    The real killer is this – anyone of any diagnosis failing to respond to treatment, failing to functionally recover enough are now at risk of being reclassified as PD. Due to MH service funding cuts in the UK, there are mass discharges happening, many people are losing support (putting aside whether it’s any good), and this is also being facilitated by the reclassification to PD as a reason to discharge on grounds of PD being untreatable.
    I don’t feel survivor activists in either of our countries have even started to get to the grips with the PD time bomb exploding and what this means. Getting that diagnosis is the kiss of death to any credibility as a human being,and it’s harder to deconstruct. With psychosis it’s easy, there is no ‘chemical imbalance’, there is no disease process, but even challenging PD concepts makes you vulnerable to being viewed as it.
    People with the diagnosis get far worse treatment of their self-harm, it’s shocking and it never ceases to distress me, but the survivor promoters of it are a tough group to challenge. Some were rejected from other services, PD services were the only ones which accepted them so you can guess psychologically what has occurred for some of them. They are so well trained by services they police their every thought and emotion for signs of ‘dysregulation’.
    It means that those who have the diagnosis who reject their label have pretty much now where to go. They are not welcomed into those groups unless they accept their diagnosis. Even those of us who stand beside them and argue hard can get seriously disliked for it and take a lot of flak.
    One day we will look on the treatment of people defined as PD as one the biggest cover ups of human rights abuses. Professionals view them as being better off dead, and I’ve watched people self-harm to death whilst they offered nothing.
    There’s no psychiatric ‘palliative’ care of those they deem untreatable/unhelpable.
    Ruta Mazelis who edited the ‘Cutting Edge’ newsletter is a fine survivor writer. Your refs are good they are some of our best writers on the subject.
    You are not alone Sera, and ‘recovery’ means bugger all to me neither, it makes me feel ill actually..
    Big hug from across the pond x

  • Seth,
    The first three are original sources on the Survivors History website and the fourth is Mark Cresswell’s excellent use of them in his review on Helen Spandler’s Asylum to Action (2006).

    1972/1973 revisited: Fish pamphlet
    http://studymore.org.uk/mpu.htm#MPU

    Mental Patients Union formed
    http://studymore.org.uk/mpu.htm#21.3.1973Minutes

    MPU Declaration of Intent http://studymore.org.uk/mpu.htm#LoveFish

    Mark Cresswell: Survivors´ history, and the symbols of a movement http://studymore.org.uk/cresshs.pdf

  • Seth have you had any contact with the UK Survivor History Group?
    http://studymore.org.uk/
    There are psych survivor scholars you might value contact with – Andrew Roberts who was active from the 60’s and put together the above resource(he knew Judi), and Mark Cresswell a SHG member who has written extensively, ditto Peter Campbell. Frank Bangay is an original member of CAPO (Campaign Against Psychiatric Oppression).

  • problems in living is one way of looking at it yes but not something I commonly heard within activism, it was a very broad movement here, Szsaz did not have the same impact here as he did in the US. Szasz was not an influence for the early groups here in the 60’s & 70’s, nor for the development of advocacy or Patient Councils. I became active in the 80’s and again I don’t ever remember us hotly debating Szasz, infact quite the opposite, the few who did come into contact with him felt little for him, and these were the most radical of activists of their time and very much anti medical model. Certain recovery promoters (especially professionals) courted Szasz and his thinking in the last few years more, and my thinking is that it’s because his thinking supported certain ‘brands’ of recovery which has no regard for social justice. Moser was far more interesting to many of us.

  • I believe Laing was appreciated more in the UK, but he was never placed on a pedestal by us like it can appear with Szasz in the USA, nor did we ever make it a ‘competition’ between Szasz & Laing, nor have we credited him for our activism, he was A positive influence along the way with others. My personal preference is for Laing but I don’t feel need to completely demolish Szasz’s work

  • Seth, I choose some of the more clear cut examples (to me) rather than the usual psychosis examples which psychiatrists would cite, and for those who subscribe to repealing detainment laws = freedom/problem solved there isn’t shade of grey, I’ve seen that enough times.We’re a long way from preventing many of societies ills and even if we went half way there, would be remove the uncomfortable ethical dilemmas I doubt it, but we could lessen the need to be faced with them yes. Of course I see the problems with allowing psychiatrists to force treatment but frequently when I raise these issues it’s assumed I must support forced drugging.

    “..You could save thousands of people by mandating a change in social policies…But that cannot happen as long as corporations own the political process in America”

    Precisely Seth, here too, and neoliberalism is spreading like an infection.

    I read the writings and listen to European activists who are struggling to live literally because of state policies because of the kind of societies we live in, it’s more than psychiatric power, that’s just one cog in the wheel albeit a bloody big one.

  • Thanks Seth, I always appreciate your analysis regarding Laing.

    There are shades of grey, it’s easy to say freedom = no force ever, kill yourself if you want, be homeless, go to prison if you commit a crime, but life isn’t always black & white like this piece shows: http://phenomenologyofmadness.wordpress.com/2013/10/27/aint-no-way-to-deny-it-if-its-in-your-soul/
    Some teenagers wouldn’t be alive if their near death anorexia hadn’t been forcibly kept alive – I’m no promoter of EDU’s, they do much damage which I’ve observed 1st hand. I don’t support decades of forced feeding and do support older women who have sought high court judgements to be allowed to die with palliative care. I also support physician assisted suicide not only for people experiencing terminal illness or degenerative conditions, I would go further than that and say that everyone should be able to access a decent death with the appropriate checks & balances. However, would I let a child starve to death of anorexia if I really couldn’t help her to stay alive – no I would not – if I really had to I would allow the minimal force to pull her away from death – but NOT continued relentless force feeding because I know how much it damages people. I’ve seen women in UK high secure hospitals (medical prisons) who have committed (often non-violent) offenses because of the appalling lives they’ve had. They do need help, but certainly not forced drugging, but nor would prison be right neither. I don’t want to see them condemned to medical prisons or normal prisons.
    Sometimes very few psychiatrists have detained without forced treatment and it is an interesting idea, what if we removed their power to forcibly treat? Or what if we only allowed them to forcibly treat for very short term and well defined circumstances i.e immediate risk of death by starvation/dehydration/sleep deprivation?
    Here’s an interesting piece:
    http://psychiatricethics.com/2013/10/28/current-problems-in-psychiatry-coercive-care-thomas-schramme/

    I don’t have the answers, I just struggle with the issues because I can’t see them as neat straight lines.

  • Seth, I agree with you that judicious ad hoc use of benzodiazepines, glass of wine, cannabis (especially in spray form) does have a place – I’ve seen some people find the latter helpful in actually managing perceptual differences having used it AFTER diagnosis(I’m unconvinced that cannabis causes as much ‘psychosis’ as is claimed), or for dampening EPS when they took neuroleptics.
    As with anything too much/too long can be a bad thing, but if chemicals are chosen rather than forced to help get through difficult periods then benzodiazepines seem a reasonable option. Ironically many family doctors/psychiatrists are unwilling to prescribe these on grounds of addictiveness yet happy to give copious quantities of neuroleptics.

  • The situation in the UK is bad, most people would not choose to live on £70 a week Jobseekers Allowance (minus some council tax/bedroom tax now), after paying for utilities that leaves a disposable income of approx £25 a week for food, clothing, travel, everything else. We don’t have the available jobs, there are often hundreds of people applying for a few vacancies and people with psych history are The most discriminated group in society and by employers. The unemployment figures are being covered up by zero hour contracts, and temp part-time work ie for a few hours for a few weeks, and Workfare which has been shown to achieve virtually no long term jobs with worse results for people defined as mentally ill or disabled.
    People with a mental illness diagnosis have the highest rates of unemployment and the least support offered.
    People on Jobseekers Allowance are being sanctioned at Jobcentres for literally no rational reason at all, the reasons are ridiculous and this plunges them into destitution. Food banks are being used by those sanctioned, those waiting for it to be processed, and those in low paid zero hours contract work.
    They are not anti-work, they are at the mercy of Jobcentres with a govnt dept which planned a week long ‘celebration’ of the conditions and sanctions which have left millions in debt, being evicted, using food banks. We have high levels of child poverty and a housing crisis causing mass evictions and debt to pay-day lenders who donate to parties. Poverty is being pimped by party donors, and big business, millions of tax payers money is being handed over to companies operating ‘back-to-work’ schemes who achieve nothing. Millions being creamed by property developers who buy up social housing cheap and rent it out to people on housing benefit getting several mortgages paid by the state.
    For people who are physically, intellectually, emotionally defined as sick or disabled they are being forced onto work programmes offering free labour to business driving down wages and taking away paid jobs. People who are terminally ill or have degenerative conditions such as Parkinsons or static impairments such as cerebral palsy are being told they will ‘recover’ and are ‘fit for work’ because ‘work is the solution’ for the ‘workshy’ and all these groups are referred to as ‘stock’.

    Does this sound historically familiar?

    The same is happening in Canada.

    People being assessed for disability benefits are having a very tough time, appealing takes a year and there can be months of no income, people have killed themselves.

    No one is taken seriously on mental health unless receiving meds, and assessors mark down anyone who; smiles, wears makeup, has brushed their hair, has a pet or child. There is the expectation to be disheveled, rock, and be incoherent to prove mental distress.
    Many of us have predicted compliance with treatment to end up being a condition of disability benefits, we’re not yet at the point of meds having to be swallowed in front of someone before money is paid but it’s not difficult to envisage it because our govnt wishes to opt out of the Human Rights Act.

    Sex offenders and people on probation sometimes have to sign-in daily so doing similar with unemployed and sick and disabled people would clearly be linking it to criminalization. The UN and Amnesty have already condemned the UK for their welfare and housing policies and treatment of sick and disabled people in relation to this.

    Be clear though – this is political which is why I keep saying psychiatry does not exist in a vacuum. Governments decide to use psychiatry for it’s own end which is why our movements must fight for social justice alongside psychiatric injustice because the two go hand in hand.
    We can’t keep imagining that all psych survivors won’t need social housing or benefits to live or work. We shouldn’t wait until pills or injections are exchanged for housing/income because that time could come.
    The conditions being attached to all social support for everyone regardless of circumstances, ability, or health are becoming crushingly punitive. Over 10,000 people have died within weeks of being declared ‘fit for work’. Anyone appealing those decisions faces being viewed as too sick to be eligible for Jobseekers Allowance, and too well for disability benefits so fall in between criteria’s – these are people already deemed to be unable to work, it’s perverse.
    It impacts heavily on psych survivors who have no chance in the job market compared to graduates with solid work histories with employers who don’t want them.
    If anything going on/off temporary endless part-time/zero hour contracts at minimum wage with JA in between can be worse because it takes weeks for benefits to be paid, and defaulting on rent means eviction proceedings within 8 weeks commence and failure to pay council tax means court-possible prison. So people turn to party donor loan sharks set up as ‘pay-day loans’ with interest rates going into double/triple figures so end up in permanent debt.

    We need living wages, to cease workfare which is stripping out paid jobs, and a more competent system with reasonable sanctions and conditions and a complete rethink on how we enable all sick/disabled/vulnerable/unable to fit traditional working patterns people to reasonably contribute without ending up going through a welfare system which means punishment or having to accept unwanted diagnoses/treatment or destitution.

    This is possible to fix, but it means political change not just psychiatric.

  • “There’s a program in Brooklyn that gives artists dental care in exchange for pieces of art for the hospital or office”.

    I’d like to see everyone have a universal right of access to all preventative, critical and maintenance healthcare. How that is funded is another issue I know.

    “I’d like to see us challenge everyone to find things they are able to do, rather than unable to do, when applying for government money”

    Me too, and I’d like to call to arms all survivor organisations to get behind fighting for the support (living, housing and working) which are being eroded and to put all these great minds together in coming up with proposals for a different way of doing things so that being who we are, living as best we can, and contributing what we can, could become a reality instead of a war of divide and rule. If we don’t come up with some suggestions it will be decided for us.

  • mjk I completely agree with you and so do many groups representing low paid, single parents,unemployed, sick, disabled people. This is an issue for all of us, but there are also specific issues to psych survivors who are one of the most marginalised groups for whom extreme policies are hitting hard. This is why I’d like to see all survivor groups joining forces with other action groups to lead on these issues with the specifics for psych survivors because it would go hand in hand with more generally aiding our overall aims to help our peers to get away from psychiatry. This level of disempowerment makes people more vulnerable to psychiatry.

    http://johnnyvoid.wordpress.com/2013/09/21/do-not-support-newly-disabled-tostay-in-their-homes-says-dwp/

    Some people have posted parts of their disability reports online where it’s claimed that people are ‘likely to recover’ from cerebral palsy, harassed by the Jobcentre whilst IN hospital, sanctioned for attending an interview, the examples are getting increasingly ludicrous. You couldn’t make this stuff up.
    The saddest thing I read recently was from persons with visual impairment, one being afraid to use her white stick and another (a US citizen) finding the Jobcentre simply not taking her ophthalmic problems into consideration even on supplying medical evidence of it. One person set fire to themselves outside a Jobcentre, another slashed their wrists in the dept, and another case involved a gun (we don’t have easy access to guns here so that’s very alarming to us). Jobcentres have been issued with ‘guidance’ on self-harm and suicide, what an indictment that a govnt dept has to issue guidelines because their policies cause suicide. Our government refuses to do an impact assessment and some people who have been assisted to live independently might have to go and live in a group home.

    I know the hatred you refer to mjk, I see it here, I know people who have stopped going out because they are so afraid of anyone knowing they are one of “them”.

    The greatest freedom is to be who we are living as best we can contributing whatever we can, all I can see are people’s skills and talents being pissed up the wall. The profession which gains from is, is of course psychiatry and all the private companies who make money out of others poverty or inability to acquire or do better paid work.

    It’s in part about how we include the marginalised (which is not an easy issue) but it’s also about our economic systems – living wages would mean no need for housing/health/living subsidies. That in itself would change the western world dramatically.

  • Problem is we don’t have systems which easily facilitate volunteering or working part-time. For some people that will be their best outcome whatever support they have however much recovery they’ve achieved and it’s not viewed as acceptable by our welfare system. You can’t volunteer without its support and part-time work usually means having to claim tax credits in order to live and these are becoming subject to further conditions and sanctions. The vast majority of people in receipt of housing benefit are in work. They simply can’t earn enough or find cheaper rents because we have a housing crisis, we have thousands being evicted from their homes right now.

    We need completely different systems which support people to contribute whatever they can be that voluntary work, part or full-time or variable between all of that. What we have is crushing potential because you cannot easily move from one position to another. Psych survivors have the highest levels of unemployment here, some jobs have hundreds applying for a handful of posts, employers don’t pick people with long gaps in their CV. We have several million people on zero hour contracts, the worst possible combination of NO sick/holiday pay, no rights, constant uncertainty, and debt because of having to claim benefits on the weeks there’s not enough work but that takes weeks to come through so people get into debt in the intervening time. The working poor are the most common attenders of food banks.

    http://themaskedamhp.blogspot.co.uk/2013/08/trying-to-work-but-living-below.html

  • Mjk – I believe I may have a small appreciation of where you’re coming from as a person who currently sees no future for myself albeit for different reasons to you.

    As you can read on this thread I can feel alone in my stance on some things and few people grasp what it and why I’ve reached that position.
    Stephen literally stopped me in my tracks by acknowledging that he did ‘get’ it, and he did so even without knowing much of my experiences which have led me to this point of which I wouldn’t feel able to write about here. He still got something fundamental about me which probably helped me get through that day.

    So what am I trying to say..several things I think. Don’t give up on someone even a complete stranger ‘getting it’ about you, maybe even just a small detail not everything. It comes along when you least expect it and when you’ve given up hope of others grasping it.

    Some of us can feel like we’re in a no-man’s land, because we don’t seem to fit any definition of anything, and to boot can end up feeling alienated.

    Recovery and notions of ‘healing’ mean absolutely nothing to me neither – and you know what? That’s OK because we’re allowed to feel however we feel.

    Sometimes when everything is that black the last thing we want to hear are hopeful words, maybe we need support to help us live (or in a living death) with feeling or being totally annihilated.

    You raise a good point about how recovery models fail to include hopelessness, destruction and suicide, almost as though it was a failure to to grasp recovery. There can be a denial of vulnerability and of enduring difficulties and with judgement of that.

    It’s an indictment of where we are when I listen to a survivor say that at least in 80’s psychiatry anyone viewed as a chronic hopeless case was at least left with some support. It’s hardly a selling point but that person had a point – now contemporary psychiatry (in the UK) means you accept your diagnosis/meds AND you MUST recover in addition. If you don’t, it’s your fault.

    Alternative recovery models outside of psychiatry are in danger of replicating that in reverse – walk away from psych/meds/do some nice alternatives and recover and if you don’t you’re not trying hard enough.

    I’ve commented before that when psychiatry gives up on people as in viewing us as hopeless incurable cases then more typically here you just get dropped like a hot potato. So you could end up in the emergency room every week and slowly die with no support with HP’s saying it’s their expectation and simply observe their notes are in order. This always existed but I do believe it’s more likely to happen now in British psychiatry partly because there’s no room for people who don’t recover. They discharge people with discharge being viewed by service commissioners as recovery when in reality the person is far removed from that. There is virtually no longer term psychological support for people who might be viewed as the psychiatric equivalent of ‘terminal’. There’s no psychiatric palliative care, and I’m unsure whether there’s any alternative palliative support outside of psychiatry for people who feel their state to be without light – but there needs to be.

    In my personal experience of supporting suicidal friends sometimes the best support I’ve been able to offer them is by accepting their position and giving them the space to talk that through. Denial of it can make a person feel worse, at least validation of feelings offers some small comfort at something being understood.

    Acceptance without judgement and with support – psychological palliative care – imagine if we offered that?

    I know an exceptional former psychiatrist who did just that for a woman (as a 2nd opinion} who didn’t want to be re-fed yet again and wanted to go, but at least she had the dignity of support. She fared better than a friend who couldn’t access anything and had to take drastic measures to secure PHYSICAL palliative care simply because it was viewed as “psychiatric” in origin i.e. anorexia.

    I wonder if we offered palliative care how many people would then survive?

    I’m thinking of Dignitas where (I can’t remember actual figures) but a high % of people who consult them and even have their case approved then don’t go ahead with it – I think because they have received proper validation of the depth of their feelings and truly felt like they had ALL choices.

    So I want to say that I SEE your black darkness, and are not demanding you see the light, so maybe we, and others could join us to hold hands in the dark.

  • That’s a really good and challenging piece Chaya and Tina I support what you’re saying because these issues are now far wider than whether is person is sick/disabled by any definition. In the UK the UN rapporteur and Amnesty have rightly condemned our housing, taxation and welfare policies which are clearly resulting in starvation, eviction, homelessness, and unnecessary debts across the population both in employment and out of employment. People with mental illness diagnoses are some of the hardest hit of all. As you say political systems mean that cogs which don’t fit into the system and can’t work in the usual ways are a substantial issue which isn’t being addressed, politically, socially and not by psychiatric survivors movements neither. This is driving people to suicide and back into psychiatric services.

  • Alex, the word disability means different things to different people, just as survivor, loony, consumer, user, do.
    Physical disability activists in the UK are strong & strident with not an ounce of victimhood about them, disability as a description is not shameful or negative to them.
    Somehow it’s different when it comes to mad people, recovery workers can baulk at the term disability but can sometimes deny vulnerability or the existence of enduring difficulties or that not everyone achieves “full recovery” whatever that is. Sometimes the acceptance and acknowledgement of experiences or ongoing difficulties as resulting in some disability can free a person from trying to be a square peg in a round hole, not an abdication of responsibility or nihilistic pessimism. Disability isn’t always permanent neither, people can be registered blind, which they need the formal recognition of in order to acquire the necessary support and protection they need in order to live more fully. Some conditions can mean regaining sight, at which point the formal registration of a disability is rescinded.
    It’s a bit difficult to fight for the need for all sorts of support without first stating what the difficulties are in some description, and more so when there is longevity – how long does a person have to experience difficulty before it can be described as disability? I know what you mean about psych services, when they use the word they mean lifelong mental patient who’s a good girl/boy and takes their meds and doesn’t expect too much out of life, that’s true, but I’d just like to offer an alternative way of looking at it which isn’t that at all for some people.

    For your interest, the World Network of Users and Survivors of Psychiatry, p12, refers to “persons with psychosocial disabilities”
    http://www.wnusp.net/documents/WNUSP_CRPD_Manual.pdf

    It always amuses me when MH professionals look shocked and horrified on hearing ‘loony’ when for some people it’s a reclaimed term of endearment for themselves and their friends, just as survivor might mean surviving services but not experiences or vice versa or both.
    User is not a term which came from UK psychiatric survivors, but consumer I wouldn’t personally use because that implies choice where there is not.

    For me voice hearer was a break through description because it’s descriptive without giving away any specific theory of understanding it, that’s the beauty of it.
    Language and what it means to us is really interesting, it never ceases to interest me how we define ourselves and how that has evolved.

    Duane, I respect your perspective for you, that fits for you and no one has the right to argue with what works for you, but I can’t go along with your thinking for others that it’s past and present and nothing should restrict because it just isn’t black & white like that, as we know some of our peers were not able to live with their distress at all.I can’t see ‘shoulds’ when it comes to surviving, how we survive, or not. Not everyone can ‘move on’ and I can’t judge others for that and say nothing is insurmountable because if that were the case I wouldn’t be missing several friends.

  • I agree with much of what you say Stephen, psychiatry makes us scared of ourselves, but we as in survivors/critical thinking allies *can* also collude with this setting us apart through recovery. I’ve felt equally as judged through recovery as I did by psychiatry, this is why I now sit outside all dominant models and it’s a lonely place.

  • The war is bigger than psychiatry and certainly isn’t the only part of it. I don’t identify as recovered or recovering and never have. I identify as disabled, not as an irresponsible victim with a ‘biochemical imbalance’, and recovery mantra’s have made me feel as lesser-than-human as biological psychiatry did.
    I think anti-stigma campaigns are a complete waste of money and would be used in advocacy and legal representation.

  • Monica, I’ve not seen what’s happened to you on social media leaving you feeling that you don’t want to comment/write for a while. I’ve felt that sometimes (probably most of us have) because it can get very heated online, and sometimes I wonder how different it would be if the conversations were face to face. All I wanted to say was if you need a break fine, but don’t stop speaking, you have as much right to express your views and truths as anyone else.

    I sensed my comment here was not helpful and maybe left the impression that I was one of the ‘don’t speak for me’, maybe I could have expressed it better but you didn’t need to justify your position. I’m fine with saying I don’t go along with it 100% of it but I do concur with points you make as well. I think some of my thoughts were as much about more generally how we (we meaning survivors, our movements) are framing distress as the Giles article, and that’s what I should have been clearer about. I can feel outside of all narratives, I’m not pro bio psych, but I’m not anti psychiatry enough, not pro recovery enough for some people’s liking, and have sometimes felt others want to tell me what I ‘should’ be thinking, and sometimes they really are.

    I don’t believe you are doing that, but I do think the issue of how we frame distress more generally is another topic worth looking at.

  • The word was used before it became a clinical term: http://www.etymonline.com/index.php?term=depression
    I’d agree all feelings are part of a continuum of human experience of which we are all on at different points which are not fixed. I wouldn’t however agree that depression is unhappiness. I’m not suggesting that the state/feelings is a biochemical condition, but I do believe there are short and long term states that run deeper than unhappiness and that we can acknowledge that without calling it a disease. Just as I believe the same for hearing voices, any other expression of distress.
    We need to inform of the grave dangers of psychoactive drugs, the difficulty in coming off them, the lasting damage they can cause, and how they can obstruct surviving. I want everyone to have full trial data, survivors testimonies and real choice, not just drug X and/or CBT. Equally I don’t want my peers who do actively chose to take drugs to feel shamed for doing so, there is a degree of judgement within survivor movements about managing with or without medication, I know not everyone, but it exists and needs acknowledging.
    I worry that mental distress, human distress, however you want to name it is in danger of being ‘over normalised’ to the point where everything and anything is just a mere aberration like colour of hair. Now I can see the point of ‘normalising’ in an attempt to get society to accept, change and support so that mental health services could become practically irrelevant, where people in distress would not end up ostracised, unemployed etc. Not everyone experiences depths of certain feelings or perceptual differences/restrictions, but if we don’t acknowledge that there are deeper levels of feelings than how are we going to justify the need for alternatives (Open Dialogue/Soteria/non-psych crisis/respite)? Not everyone feels celebratory about their experiences. Depression can mean losing large chunks of living and with permanent reminders of that fact.
    What psychiatry does is bloody terrible. What we can experience with or without psychiatry is bloody awful too.
    We don’t have to view it as a ‘disease’, or anyone as a ‘victim’, but we can acknowledge different states can make people feel ill, half alive, or not want to be here at all and not everyone wants to embrace it.

  • John you’re right, physical disability activists do have a broader social analysis. I’m thinking that there needs to be a MH version of Spartacus written by survivors, there is the start of some interest by a couple of individuals because it’s clear the larger groups are not going to take a lead on these issues as a campaign topic even though it does dove tail with diagnosis debates. So maybe if a few individuals draw up a position paper it would help.

  • “I think that John was spot-on in his clear identification of how the phenomenon of human misery is directly tied to the trappings of a militaristic, capitalistic Industrial Growth Society”

    Heartily agree,but you can be jumped on for even raising these issues as being ‘left’ or ‘socialist’, groups are not looking at this and social justice issues despite them being intrinsically linked to diagnosis and pushing people into or back into psychiatry

  • It’s just my personal observation Seth regarding Szasz supporters tending to have a neoliberal outlook, I’ve just yet to encounter those who don’t so it’s become an association for me. I’m finding your writing on Laing and Szasz interesting and believe your analysis of the two men to be fair.

    No Anon I will not name my friend Szasz called a ‘malingerer’, I don’t have her permission to do so, Seth’s writing of Szasz in the context of viewing psych survivors as ‘malingerers’ reminded me of her experience which she relayed to me verbally, it is not recorded or in print, otherwise I would have referenced it. It was a relevant example in the context of Seth’s writing, it is of course your choice to discard it.

    Yes Workfare is state enslavement. I’ve nothing against genuine unpaid work placements offering people experience and training they need, but when companies are using people forced to be there for 30 hrs a week, displacing existing staff and on an ongoing basis, that is not acceptable. If they have 30 hrs a week work available then they should offer those people forced to be there a paid job. Companies using free forced labour for their profits is not acceptable, it’s reasonable to expect people to be paid a wage for their work. It’s not ‘reciprocal’ when those people are faced with no income to live on if they don’t comply. The system doesn’t even work, it just puts money directly into company coffers. There are also individuals who have made millions out of taxpayers with their ‘back-to-work’ schemes which again have been proven to be failures. Both these and Workfare do not demonstrate they assist people to secure work.
    There should be real assistance to help unemployed and disabled people, but there isn’t. All there is are sanctions resulting in loan sharks/food banks and forced labour.
    I cannot understand why anyone would not wish for there to be meaningful help rather than this. There needs to be proper apprenticeships, much more support for people without level 2 education, and MH system survivors have the least employment support of all disadvantaged groups.

  • Workfare has been proven not to work, unemployed people are no less likely to secure employment by not doing it. It has wasted millions of tax payers money and gives business free slave labour, sometimes laying off existing paid staff or cutting their hours. People forced to do it are threatened with loss of their benefit which would mean debt/starvation/homelessness, so yes it is state enslavement. People who are sick, disabled, and defined as mentally ill are also forced into it. Graduates doing voluntary work whilst seeking a job relevant to their degree and desired future career can also be forced to do it.

  • Szasz called one of the UK’s most respected survivor researchers a ‘malingerer’, her work is her life, you would never find a more hard working person than her. The only time she has ever taken out has been when she’s been hospitalised, mostly under section.It seemed so bizarre that he would say that of her given she hadn’t taken any other state support.
    Another friend saw Laing in his youth a couple of times and found his grasp of his perceptual differences to be unusually enlightened, he experienced Laing as a gently compassionate and deeply intuitive person.
    Both their works contribute something important, whether people favour one or the other I’ve concluded comes down to general outlook rather than their work. Neoliberals veer towards Szasz.

  • chrys, most beautifully phrased and the most pertinent statement for me on this thread:

    “I would have appreciated respite and rest, time for me to get out of the psychosis on my own, gently, not the harshness of the psychiatric drugs. But neither would I have wanted to live in chaos, things going out of control. Here’s the challenge. Allowing people space in their madness, to be safe and to recover. Not interpreting their experiences in the ‘light’ of our knowledge or supposed wisdom. For how can we really know what someone else is going through? It can only be imagined”.

    I think Laing and Mosher grasped some sense of this.

  • “Any movement devoid of social justice is no true movement at all”.

    Completely agree Stephen, I think that’s the best quote of the week for me, and I’m sadly unsurprised by your teaching experience.
    It’s a question of how we do we get our respective movements to wake up to this and manage the vitriol it can illicit from those who don’t wish to see social justice or recognise it’s part of the same struggle with psychiatry? Answers on a post card! Here, some of us refer to psychiatric activism as a social movement

  • Yes Stephen this is what I’ve been trying to say for some time, that it’s pointless focusing on forced psych treatment and diagnosis to the exclusion of social justice and how people live. Whatever our party politics or preferred political system is there are some common points of interest we could work on. If we don’t, it will be our undoing as a movement.

  • People with disabilities or defined as mentally ill disproportionately remain in lower level jobs and experience high levels of unemployment. ‘The message’ as you put it is not quite as benign as you state.Private charity..that is amusing.

    However I’ve finally found a single point we agree on regarding part-time working. Way hey!

  • Thanks Stephen.
    This is why I wish survivor groups/leaders would have these discussions because these are real world issues which tie into psychiatry but too often it’s ignored or people are chastised for being in receipt of benefits. That doesn’t help. So if we can pull apart psychiatry with a fine tooth comb why are we so reluctant to speak of how people manage to live? And do so without prejudice or shaming.
    Many people defined as mentally ill in receipt of welfare whether in or out of work don’t feel able to speak out for very good reasons, they are more silenced than people with physical disabilities so I view it as a duty of activists in better positions to speak out on these issues.
    Diagnosis helps access support whether anyone likes it or not, that’s how it’s currently structured, it needs to be different so support is accessed without that and there needs to be a wider range of outcomes other than full-time work.
    Not everyone can do full-time work, and part-time work here unless well paid still needs to be topped up with benefits, but rules have made that harder. Ditto for anyone attempting to become self-employed. So, we have a system which dictates all or nothing.
    Some people take up voluntary work and either don’t have the confidence to go back into paid employment or can’t manage the stress of it. Maybe chosen voluntary work should be an outcome for some people.
    Then there’s the issue of training/education, how accessible that it is. Not everyone can work and study at the same time to improve their prospects.
    Job coaches where they exist have a very low bar for psych survivors, shelf stacking, and there’s so little employment support. We have a high level of unemployment where 100’s are chasing a single post where a person with massive gaps on their CV simply cannot compete. In retail, short term sick leave for physical reasons can get you the sack, they don’t tolerate a few weeks or longer for mental health.
    Some people ended up in psychiatry at a young age before they ever established a career, it’s especially hard for them.
    It’s a complex picture which requires sophisticated solutions, but until groups, orgs, activists and survivors face this head on we don’t progress.
    We need to take the bull by the horns and come up with alternative systems and not leave our governments to it. Here physical disability activists have led the way, they produce reports etc, they are proactive, we could learn a lot from them. Whereas psych survivor groups do bugger all.

  • Business confiscates and leeches off the state and poor, this is widely recognised now.
    Yes we love our National Health Service.
    Mmm, think I’ll say it again because I love the words so much – National Health service..

    I know I do apologise on behalf of the British people for our creepy bizarre government. They are an embarrassment to us, but it’s a totalitarian regime you see, we have no control over such things.

  • It isn’t an ideal scenario but people are not facilitated to live/work as best they can and are being seriously and increasingly mistreated.
    I stand beside my fellow survivors who cannot work sufficiently and consistently enough to sustain themselves, I believe they should be supported but I’d like to see a different system of support for sure. One which isn’t black and white where people are forced into a position of they must be able to do everything or nothing. It’s not great for people with physical or learning disability problems neither, and it has been shown that people defined as mentally ill are the worst off of all.

  • It’s the opposite here Stephen, people do not have social workers or nurses helping them to claim disability benefits, and discharge and employment are regarded as the main goals (virtually no assistance with the latter) and people can be reassessed as frequently as every 3 months. Services along with the general public, politicians and media sneer at people in receipt of state benefits. It’s viewed as shameful.
    Welfare systems do need overhauling to assist people to give the best of themselves as able and supported when they can’t. What we have here is a system which has been deliberately redesigned to not assist costing billions using systems which have been shown to not work, but business has profited from it. Meanwhile poverty has been reclassified as a state of mind.

  • Everyone is a tax payer, the vast majority of people who end up on welfare have worked and payed into the system and disability payments are also available to those in work for the extra support they need or because their work is low waged. Some people use disability payments for non-psychiatric support and personal assistance, that requires them to state their psychiatric diagnosis, I’ve got no problem with that because that’s the way the system is currently structured but I look forward to a future where diagnostic systems are not required to qualify people for perfectly reasonable support to live and work. So lets not get into blaming people, those with physical disabilities also end up needing state support and are subject to the same dire unforgiving system which could also dictate to them what they should do.
    Everyone ‘relies’ on the state one way or another.

    Agree 100 families truly dire following on from Zito.

    Here’s some further dire reading for you:

    http://disability-studies.leeds.ac.uk/files/library/FROM-BRITISH-WELFARE-STATE-TO-ANOTHER-AMERICAN-STATE-2013-3rd-edit-FINAL.pdf

    http://disability-studies.leeds.ac.uk/files/library/THE%20HIDDEN%20AGENDA-a-research-summary-March-2013-FINAL.pdf

  • Not read that blog but being anti wage slavery and poverty pimping seems reasonable to me. 80% of job creation here has been little over the ‘minimum wage’ which isn’t a ‘living wage’ given it typically requires housing benefit (lack of affordable housing/no new build/buy-to-let landlords raking in housing benefit sometimes via multiple properties including party donors)and Working Tax Credits (subsidizing business not wishing to pay decent wages). We’re also seeing the rise of zero hour contracts with no sick/holiday pay, and unemployed put into ‘Workfare’ costing millions(making good money for party donors and chums)now shown to be less effective than leaving people to find their own jobs (chasing less available jobs than the 2.5 million unemployed).
    Even food banks make money for party donors apparently whilst whilst parliament deny any connection between poverty/denial of welfare and the need for food banks, which is akin to denying malnutrition being related to a lack of food

    Check out this great Canadian anti poverty group for poor people in work and legitimately out of work through unemployment, underemployment, caring responsibilities, ill health, disability:

    http://www.ocap.ca/

    “For some Americans, no doubt, the conscious goal is to get classified as mentally disabled so as to receive disability payments (averaging $700 to 1,400 per month). But isn’t that, too, a withdrawal of cooperation from society and a rebellion of sorts, based on the judgment that this is the best-paying and least miserable financial option?”

    Really? You believe that people in receipt of disability payments make a conscious decision to do so and that it’s the ‘best-paying and least miserable financial option’.
    In the UK 32 people a week are dying by condition or suicide because of welfare assessments. Readmitted, sectioned, self-harming, attempts to die because of the stress of going through truly dire assessment processes with the very real risk of ending up with no income or homeless. Loss of legal aid makes appealing difficult and the process leaves claimants with no income for an unlimited period of time ie weeks to months which can lead to debt, loan sharks, food banks, eviction notices, and Amnesty International have now condemned what is happening in this country.

    People in receipt of state support are certainly not taking an easy option and are subject to considerable harassment now, we have increased rates of disability hate crime fueled by right wing media and govnt {all parties}.

    This is before we even touch on why psychiatric survivors end up on disability payments in the first place. I doubt most think it’s a desirable position to be in but the reality is those defined as mentally ill have the lowest employment rates for many clearly recognised reasons which are nothing to do with ‘rebellion’ or ‘opting out’.

  • I had a discussion with a UK prof about this who suggested that forced drugging in out patients might be ‘better’ than the damage they had seen in those hospitalised for long periods, and they tried to suggest that forced out patient treatment was somehow different to our CTO’s where people are readmitted for forced drugging. My answer was a needle in the arse feels the same no matter where you have it, home, clinic or hospital. The effects are just the same too. Being ‘binned’ as some of us say here is dire but something which is possible to survive, but the physical effects of drugs some of which are life changing or permanent are not. I received no further response..

    Here CTO’s are also used to ‘guarantee’ a service/bed by some consultants. I remember the Zito Trust well, they did their thing tirelessly until they got what they wanted. I note this org has now sprung up:http://www.hundredfamilies.org/TheProblem/keeps_happening.htm

    Am I right in thinking that in some US states compliance with treatment in the community is linked to welfare payments?
    That’s a nightmare vision I fear we might be edging towards.

    We had a programme here recently which showed ‘maintenance’ ECT, a man (voluntarily) being shocked every few weeks to keep his depression at bay. I’m observing a renewed promotion of ECT in some psychiatrists with utterly ridiculous claims. One for example claimed that he could be sued for NOT administering it, so I asked him to produce evidence of this. He produced a Canadian paper from 1979 claiming this was the most important medical ethics paper of all time implying I was a bit dim for not knowing of it. So I repeated, please show me your evidence for the UK of any case at all of a patient/family attempting to sue a psychiatrist or NHS Trust for ‘failing’ to administer ECT. He couldn’t, but insisted on the ‘risk’. I pointed out that we no longer have legal aid for real medical negligence (nor for welfare/employment) so unless you’re rich there’s no chance of suing anyone. Survivors who have been iatrogenically damaged cannot sue/get compensation nor those who have been sexually violated. I offered a reference for the latter and he accused me of suggesting that he abused his patients. That’s the level of debate you get with some of them..

  • Even though we all have the common sense here to see that the accusations were of course completely without validity it’s still not nice on a human level to hear/read that. Of course you don’t have blood on your hands Robert and these sorts of tactics have been around for a long time.
    I remember before the hearing voices movement started of similar sorts of slurs. Before the terms ‘voice hearer’ and ‘psychosis’ came about talks (from survivors, allies and professionals) were about ‘Schizophrenia’. When I did such talks questioning the lack of full information, lifelong medication, the possibilities for alternatives, no where in my papers did I state “everyone must come off ALL medication NOW”.
    A member of the former NSF (National Schizophrenia Fellowship), which was mostly a relatives organisation for a while seemed to follow me around at events and would jump up immediately after I’d finished speaking always to say the same thing, “You’re telling people to stop taking their medication!”. It almost became comical as audience participants would end up answering this person before I did saying “No she didn’t”.
    Equally I would find myself on the wrong side of survivors telling me that I was lucky I didn’t need to take daily medication as they did and would die if they didn’t, through to, unless I did take daily medication then my condition could not have been that serious.
    It’s not easy being an activist Robert – but don’t let it deter you, take support from your friends and allies, of which you have many here.

  • I know Chrys it’s obscene, my rage is getting beyond words.

    ‘Time for Change’ (otherwise known as Time for Fuck All)waste 20 MILLION on stupid adverts to target ‘stigma’ in the general public whilst Amnesty rightly condemn our govnt for abuses of human rights, I’d rather that money was spent on human rights lawyers to take our govt to court. A survivor said today “Enforced passivity as the price exacted for requiring help has been the most corrosive thing to happen to me”. The sense of powerless and loss of hope is greater now than I’ve witnessed in a some time, the crisis is amongst us not them..

  • I must agree with you Ted on this.
    Our RCP [Royal College of Psychiatrists] recently produced
    a “guide” for MP’s about us, on how to “support” constituents, it’s a sick joke:

    http://www.rcpsych.ac.uk/policyandparliamentary/projects/live/discriminationagainstmh-1/mpguidetosupporting.aspx

    Their policies (all parties) are hammering survivors now more than ever and they are the seat of rising levels of hate crimes and they produce this shit.

    These are the people who also believe it’s helpful to produce ‘get well’ cards:

    http://www.rcpsych.ac.uk/usefulresources/getwellsooncards.aspx

    They don’t have anything better to do..

  • Lucy thank you very much for replying, I’ve always been an admirer of your work and positions on many issues.
    I knew you would have a wider analysis on this and my point of posting was in the hope that you would flesh that out which you have, and I for one appreciate it because of our country’s current suppression, we have many battles on our hands at the moment including our NHS being deliberately set up to fail and sold off along with the much else. The medical profession is being complicit in some quarters with concealment of social injustice causing mental distress, whilst others are trying their darn hardest to help against a fascist tide.
    There are few UK survivor activists who always refer to psychiatric oppression within its wider political context never seeing it in isolation, Peter Beresford and Jan Wallcraft are examples of people who always do so, otherwise there are not enough high profile voices within UK survivor activism who do so – so my call to peers is to please do so, because if we don’t speak out we are colluding with it.
    The ice cream analogy – a forensic psychiatrist once used it to describe people deemed to be Schizophrenic being like a cherry on top of a raspberry ripple ice cream (which could be removed) whilst psychopathy was likened to the raspberry ripple (which could not be removed), so I decided to put the picture to better use!

  • There is a council where people with “known MH problems” cannot bid on properties where the previous occupant also had “known MH problems” and this is at a time of housing crisis. There is a form of MH/disability cleansing going on here and that’s local and national government (all parties). Capitalism is causing Western crisis on a scale as big as psychiatry and they go hand in hand

  • This is all great stuff, but Lucy, Jacqui, Suman what really hacks me off about British survivors and critical thinkers is that the debate all too often gets stuck on diagnosis as the be all and end all of the debate when psychiatry does not exist in a vacuum. It exists within a political system which would crush anyone not conforming with or without psychiatry. So while all the earnest discussion about the profoundly damaging impact of diagnosis and forced treatment goes on people being killed in other ways by systems and policies which hand deliver them to psychiatry’s doorstep and get little comment, no comment or paid lip service to. It’s disability and human rights activists who are speaking on these issues not mental health activists.
    Diagnosis means nothing to those facing social security assessments where GP’s are being instructed to not help, psych reports are not available due to service cuts and yes diagnosis is actually needed for them like it or not. I’m seeing service users face the prospect of destitution because if they appeal a negative decision (after a harrowing process) they face months of no income before they are allowed to formally appeal (a process in itself which takes at least a year and requires formal representation from ever hard pressed CAB’s at tribunal court). Months of no income means losing social housing (eviction notices issued within 2 non-payments of rent), non-payment of council tax can mean jail time, and food banks can only offer a maximum of 3 tinned food parcels a year. We might not approve of those who use services, and/or use their diagnosis to access an income to survive on (or Direct Payments to pay for their chosen non-medical support which still requires some health & social care backing) but this is their reality.
    I’m fine with the debate on diagnosis and support change, I want to envisage a future where distress is met with; Open Dialogue, Soteria, non-medical crisis houses, more peer support, where ‘recovery’ is truly self-defined (or not used as a concept at all if chosen), where everyone is free to chose their own explanatory framework (even if we don’t agree with it), and assisted to live to the very best of their abilities and aspirations and where if there are enduring difficulties these are also accepted.
    Where people are assisted to live and work in paid, unpaid, and variable ways which suits them best because what we currently have does the complete opposite.
    Fighting psychiatric oppression has to go hand in hand with fighting social and political injustice too which also kills people and those very injustices also drive people mad along with the personal, relationships, and traumas, and can drive people into the psych system, and keep them there.
    Removing diagnostic systems in itself doesn’t shift everything, because they are infused within many administrative and financial structures like the raspberry ripple of an ice cream. You can’t just remove the raspberry sauce, you have to address the ice cream too.

  • Abbot “..the “fragile“…they made need to look at their “triggers“and immerse themselves more in their “resilency“ literature..haha…”

    Is this directed at me given I raised the issue of ‘triggers’ [not the best word I know] earlier and Matthew also referred to it?

    If it is then it’s not clear whether you are being tongue in cheek or sarcastic – if it’s the latter then please DO laugh at me directly so I can respond directly.

  • ..and not exclusively for psychosis too, people of any diagnosis can be given antipsychotics or mood stabilisers and too often there are 12 month studies with intensive psychological support so the results appear good, but longer term we know they’re not.
    This study is really important and confirms what I’ve always thought, that sometimes [with consent]very judicious and selective use of Benzo’s in a crisis are safer. There is no justification for forcing anyone to take antipsychotics for life, and evidence such as this cannot be ignored.

  • Mental health is a political issue, our political systems allow biological psychiatry to operate and profit from it, along with hand delivering people to psychiatry because of social injustice and direct oppression of whole sections of society. I cannot be silent on these issues anymore than I could be silent on trauma and it’s causations of distress which land people in the psychiatric or criminal justice system. I know this can irritate some members, but I’m just one person, my words on these issues can do bugger all except bear testimony.

    Sera you make points I’m nodding in agreement with because in the UK it’s been found that the suicide rate AFTER discharge isn’t looking too good..and I never fail to be amazed at how bad MH professionals are [generally speaking] when it comes to assessing ‘risk to self’.

    Dbunker, I can’t accept your point, referring to concentration camps in relation to guns laws, and you say they were the work of psychiatry – they were hardly alone, psychiatry was not the sole architect of the Holocaust. So owning a gun is a right along with all other rights, and without that it somehow invalidates all other rights? That doesn’t make sense to me.

    I support your take Darby, “I have no interest in owning a gun, but neither do I want strangers thinking they can tell if I’m dangerous and have me locked up”.

  • “Tina raised a connected issue of “upper class aggression” and Joanna has raised issues related to “triggers.” I would say that one of the more subtle forms of “aggression” or perhaps “passive/aggressive” ways to disrespect someone or “trigger” them is to ignore or invalidate their feelings by not even acknowledging their existence”…
    ”In smaller ways this could be recreated at MIA when bloggers ignore strong feelings, especially when some of their own writings or comments seem to provoke it, even unconsciously.
    In some way this brings to mind the famous character, nurse Ratched from “One Flew Over the Cockoo’s Nest.” She never showed emotion, or yelled at people or even raised her voice, but she sure knew how to provoke people and then when they responded with anger or emotion she belittled or punished them.
    Now I am NOT making any direct comparisons to nurse Ratched to those blogging at MIA but only using this example to describe a certain process in communication that has undertones of more subtle forms of aggression”.

    Richard thank you, you have voiced what I felt but couldn’t quite find the right words for, that’s what I felt regarding Jill’s blog [and my subsequent question], so I remain with a negative impression so that I don’t feel it is worth my effort to post of her future blogs, whereas other bloggers and posters even when there is vibrant disagreement at least take the time to acknowledge.

  • Jen I appreciate the fact that you always without exception acknowledge, engage with, and treat with utmost respect everyone who posts on your blog, that’s an attribute in you I wish to shine a light on.
    Whatever any of us say you always have this way of taking the best from it and leave me feeling like whether you agree or disagree you thoughtfully consider and honor people’s words. I always come away feeling that everyone’s words have mattered to you. It’s a nice quality.

  • Jill,
    I wish you had responded to and engaged more with posters on your therapy blog, may I ask why you didn’t?
    I appreciate pressure of time/workload issues, but were there are any other reasons as to why you didn’t engage that much [or maybe you didn’t feel able to]?
    It’s an open handed question, I’m not wishing to attack you, but maybe it would be useful if I said that for me your sparse engagement left me with a negative impression but I don’t know if my impression is accurate hence why I’m asking you.
    Did you realise that your limited engagement frustrated posters [hence some negative responses]?
    It is of course your choice as to whether you reply, I won’t enquire further if you don’t,but I ask so I can consider if/how I post in future on your blogs.

  • me too Chrys, my family were always united with me against the system, but they had no support, no bench mark, it was really hard for them and at one point we probably could have done with space and not been together for a while, and with maturity I made sense of just how hard it must have been for them. I so wish there had been something motherbear around for them because the only relative org was the ‘National Schizophrenia Fellowship’ and they were cold shouldered in the only meeting they attended after being asked why I wasn’t medicated and in hospital..

  • You have a point cannotsay, I think of friends who are quite understandably ostracized from their families because their families were the cause of their distress through abuse, neglect etc, healing with them would never have been possible, in fact they needed separation in order to survive. Then as you point out there are families who have instigated commitment/sectioning – how would you feel about a ‘truth and reconciliation’ process like they did in South Africa whereby victims of Apartheid had the opportunity to detail exactly what was done to them and the perpetrators answered to their actions. Some forgave, some did not, but overall attempting the process appeared worthwhile to me even if there was no reconciliation, even if it only offered the victim the opportunity to say it how it felt.

  • I know this is not strictly on topic but I really wanted to make US survivors aware of this because it does have a bearing on [UK] activism and development of innovative services – leading politicians have recently described disability activists/groups/petitions and reports as “extremist” and “extremism”. Also political point scoring using our Citizens Advice Bureau [which is taking up the slack of Legal Aid having been cut] and now the only charity available to many people for help with housing/debt/welfare forms. Given anyone addressing social injustices are openly attacked in parliament, how would any MH service be commissioned if it assisted it’s users with those very issues which as we know are significant triggers of mental distress?

  • I’m more than wary of ‘recovery’ I’ve come to detest it in a visceral way because I’ve seen too much of it here become a stick with which to beat people after it’s been wrapped around a medical model of mental health. That’s what [at the worst] can make it so insidious, how it can be wrapped around ANY ideology, any agenda, by anyone with ‘prescribed’ descriptions of what it ‘should’ be from – you must walk away from psychiatry/cease meds to accept your ‘illness’ and be compliant – polar opposites!
    For me walking away from psychiatry and ceasing daily meds hasn’t equalled automatic ‘recovery’ for me, and some of us can be left feeling that those of us who define ourselves as experiencing enduring difficulties are somehow second class citizens or an embarrassment, as though we somehow degrade the concept of recovery by our existence and failure to live up to the mark. Within services it’s a horrible hybrid of the two – learn about your illness/take your treatments AND you must damn well recover = getting out of services asap and get employed.
    Political divide & rule where only full employment and no receipt of any state support is valued [I’m including in-work support] has infiltrated survivor activism with survivors being judgmental and even abusive towards their peers who either use services long term, are not in paid work, are in receipt of disability benefits or in-work benefits [because of low pay/hours]. I’m really ashamed of this because I guess I held us to higher standards, that we would be more accepting of each other, and indeed IMO we were accepting in previous decades, it didn’t matter who was taking meds/using services/employed/unemployed/doing voluntary work etc, we seemed to accept each other’s contributions and positions better.

    Within MH services, we have a ‘Recovery Star’ in our ‘recovery focussed’ meds/CBT/no choice services – the star offers more points to paid work than voluntary work, why?

    Recovery has become an industry, a brand, and in saying all this please don’t think I dismiss all survivor or professional efforts in this area, I really don’t, but I do remain overall critical of the swathes of poetic descriptions I read of recovery being this nice journey and our choice – because it isn’t! Not socially, not politically, not in healthcare, and even within professional critical thinking/survivor circles taking a critical stance in relation to recovery can mean being ostracised from people who once respected who you were and what you offered, that makes me sad.

    I resent the fact that it’s pretty difficult for survivors to have a platform at a conference unless they can offer a ‘recovery story’, that’s the expectation now. I worry about those who we will never see here, never see at any ‘alternative’ event, I don’t want to see an underclass of survivors..

    Recovery as a word and concept IMO has been bastardised here by politicians, policy makers, NHS commissioners, managers, MH professionals, academics, and even from some survivors and allies who profit from it, for me personally it’s now too corrupted a word for me to entertain. Some of us even describe ourselves as unrecovered, failed voice hearers etc, we’re making a point [as opposed to ‘sitting in our sick role’].

    If *some* recovery approaches dictate what people should be/do then it simply replicates biological psychiatry, for me true freedom is about being able to be who I am and for others to accept alongside me my limitations as well as my strengths.

    I’m horrified by service “Recovery Colleges” with their like coach phrases and pictures of flowers, it’s as though someone must be employed to look up ‘inspirational’ phrases and pool them together for recovery leaflets. So people are taught how to manage their ‘illness’, put together a CV, do some mindfulness and off you go..

    Ok rant over, Open Dialogue, Jen that’s a fascinating topic, I’ve watched some of the Youtube video’s and it certainly grabbed my interest and made me wonder what if..what if I’d experienced that approach when I was 16-17, how might things have turned out for me? There’s definitely something within that we could learn from, but maybe we also need to understand the wider socio-political and cultural context within which that approach operates. I say that because many decades ago I went to Japan and became aware at one point of survivors hanging onto my every word wanting the ‘blue print’ for change for them and I stressed that whatever ‘worked’ [however we define that because it’s subjective] in the UK context wasn’t necessarily transferable to their country with a completely different history and culture.
    Also I try to picture Open Dialogue and how it would deal with current socio-economic pressures here, I’m thinking of low income families and service users struggling with housing benefit and working tax credit cuts, maybe subject to sanctions/food banks – no amount of talking makes that more palatable or takes away the distress it induces. Can Open Dialogue address social causations [and maintenance] of distress?

  • It would be good if you wrote about it Matthew because it’s something which affects all of us to some degree.
    I am saddened you have received abusive emails.

    Online communication has changed things from where we used to meet in each others homes, day centres, communities, and at more accessible regular events/conferences, when survivor groups were less ‘professional’, corporate even, profit making, with less avenue for entrepreneurs and freelancers. The up side is obvious hardly needs stating, but it has also had it’s down side. The sorts of discourse when it gets personal, angry in a unpleasant way, and how we value each other can get skewed online because we can’t see facial expression, hear tone of voice etc. For example, with friends/relatives I would always say ‘never let us argue by email’, we must speak or see each other face to face because it is different, and what might be argued over on the screen might not come to anything in voice or face to face. I have noticed generally speaking that online it can be intolerant of difference or we might argue in a manner we wouldn’t face to face.

    In saying this our survivor movement was different in previous decades where we wrote letters and used an abacus!! I do remember how hard we argued in face to face meetings, but we didn’t hold onto bad feelings for long about people afterwards, would never air ‘dirty washing’ in front of professionals. In fact I remember seeing survivors who had disagreed bitterly immediately pull together with a group of psychiatrists, an amazing sight and testament to people overall putting the ‘greater good’ above anything else. Would I be confident of that happening now? No.

    I take what you say Stephen about civil dialogue in some quarters, I too have seen this.

    Tina you have a good point too about being even handed regarding professionals, and I would add to that how survivors treat each other too.

  • yes I remember a thread with a neurologist where I stated ‘this is bloodsport’ the misrepresentation and putting words in mouth were unwarranted, equally though I really don’t think Jill helped herself much with some fairly outrageous statements [in the views of several members] regarding words not hurting like something physical and issues around sexual abuse. Well hello words DO hurt, this blog is about just that…

  • Matthew thank you, for several things – your personal communication with me which helped, for your moderation and patience.

    I do think that anyone moderated needs to know why [in order to learn] or asked to reconsider/how the other person feels.

    I also think that bloggers have a responsibility to attempt to respond [as they are able to] avoid ill feeling when considered and heartfelt responses and critique are offered to what feels like explosive views.

    I also wanted to say something about triggers, sometimes what triggers us isn’t always related to what is immediately occurring.

    As I said to you privately, I’ve never been moderated before anywhere so I prickled [I own that, and take responsibility for that].
    I also felt aggrieved at some serious online abuse I have experienced and witnessed [UK sites] which is why I no longer post under my real name because of how it impacted on me. I’ve seen and experienced survivors being directly threatened for their views, and people shamelessly abused for being in receipt of state support. You, MiA, even today’s unpleasant posts towards me which you removed are nothing to do with those experiences, something just ‘resonated’ but I own that. I just thought it might be useful if I said it publicly in case things have ever resonated for others, as in feelings/responses may have been about something touched in us rather than deliberately setting out to degrade the other person.

  • “Thomas Szasz is one of my heroes. Always vilified, yet always polite in his response”.

    Actually he wasn’t always polite, at an event in the UK he was incredibly rude to some european survivors and shouted them down, wouldn’t listen [they were respectful in their communications] and called one of our leading survivor researchers a “malingerer”. So even ‘hero’s’ can it get it wrong!

  • Matthew I support what you’re saying and Laura’s words.
    I too felt intimidated when I first posted here, not antipsychiatry enough, too focused on social injustice for some members liking. I strongly feel we must hold onto our empathy in disagreement, I have stated that a couple of times.
    I was away for a couple of weeks and on my return found my comments to be moderated, ‘awaiting moderation’.
    I had no idea I had offended so please could you let me know what I did, I’m fine with apologising to anyone where that is the decent thing to do

  • I don’t mind you asking Ana.
    There are voices I hear, see and feel. The voices I hear don’t have a physical form I can see, other than two colour’s which can take any form i.e. street/shop sign. The voices I see obviously do have physical form, firstly externally to me i.e. an animal, and I can hear them [the sounds that animal makes] and feel them if attach themselves to my body or they attack me. Also internally where they can move under my skin or change the shape/size of body parts typically hands/face.
    In some ways the voices I hear are easier to manage than external visual ones which at the worst I can end up cutting off me or the internal visual ones which I can’t remove not unless I resorted to amputation. In saying the external visual ones have sometimes resulted in my needing surgical repair.
    I can’t see images of the visual one because when I see stills pictures or live images on the TV they can jump out at me resulting in ‘my’ animal voices attacking me.

    I would do this research differently, I would let people have access to sound studios to make recordings of their voices and to use however they see fit whether that’s part of therapy or not. Visual stuff might be harder in this respect.

    It can be useful to say to a friend or whoever ‘my voices are telling XYZ’ to ‘check out’ their words with what the person says, sometimes that helps, sometimes it doesn’t.
    A trusted friend has sometimes spoken to my voices and asked them to leave me alone for a while but without expecting them to speak to him. Sometimes that’s helpful.

    It’s a question of stock and evolving strategies but level of coping probably matters more than level of intrusion.
    I can’t accept my voices are emanating from me, but I accept their existence.

  • Disagree Ted, we need survivors on the inside and outside of the tent, it’s down to personal choice which you do. Those working on the inside are not hurting stopping anyone else’s work.

    Biological psychiatry is a tyranny, *some* of what is promoted as alternatives can also be in danger of replicating that, true freedom is being able to choose what we want and need for ourselves without judgement from anywhere.

    There are limitations, there are certain kinds of work/involvement which do feel like banging one’s head against a wall, I couldn’t be a service “champion” spouting whatever the commissioner wanted me to, nor rubber stamp a piece of research, we each draw the line at different points, but not all work within the system, not all collaborative work is a waste of time. Just as not all survivor/alternative work is always nice and supportive.

    As for your shoes Sera, that did make me smile, I’ve experienced some versions of that, and if I had henna painting skills I’d offer to decorate your feet!

  • Recovery makes me feel ill in the same way that biological psychiatry does so I reject it. Anger can mean survival and when harnessed there’s nothing more powerful than a survivor calmly speaking of torture and what others can learn from the experience and do/not do

  • Hi Jonah,

    I know you were not promoting voice dialogue but actually I wouldn’t mind if anyone did, it’s a perfectly valid intervention for any voice hearer to try out. As with anything it comes down to personal preference, what suits one doesn’t suit another. I’d happily include sessions on it in a conference, it doesn’t matter that it didn’t rock my boat, I still see the value of it.

    The film you refer is another matter, I would be quite critical of how the subject was presented in that [as opposed to being critical of the intervention], I am a voice hearer who has learnt to live with my voices, but my relationship is one of endurance not recovery.

  • I’m familiar with the voice dialogue approach Jonah it’s been around for quite some time, [can’t remember the name of the person who originally developed it now], I tried it in the 90’s.
    It’s a useful approach and definitely has a place, but I personally couldn’t get on with it, I found it impossible to get my voices to talk to another person on demand, I can’t get them to answer me on demand!
    I also believe voice dialogue requires considerable skill and shouldn’t be done by just anyone after a workshop, be that professional, non-professional, or survivor. Like any psychological intervention it has the potential to be controlling, suggestive or damaging in the wrong hands.

  • yes Steve, if we listen for long enough all distress no matter how it’s expressed can be understood and placed in context. When my deaf friend is in crisis defined as ‘Bipolar’ he removes his hearing aids and shouts about his hearing, clearly his distress about his sensory disability is a part of that crisis – but it’s never heard, they only pay lip service to this, viewing his crisis as illness and his hearing as secondary

  • Pay no attention? That’s so untrue Jill. You have no idea what we hear/see/feel in altered states. It’s assumed in ‘catatonia’ that the lights are on but nobodies at home, the opposite is in fact the case, people in that state DO remember what is said and done to us. You’re also dismissive of depression and anxiety but this is part of the ‘othering’ and ‘specialling’ of ‘psychosis’ because it’s not immediately understandable to you

  • She was a very gentle soul Stephen, my definition of a “proper” Christian, she never wore it on her sleeve, she simply lived it, she got on with the practise of it, I respected her faith. Yes precisely, it’s the thing about doing whatever is needed, cultural competency. Like if someone said to me, how could I help you with your visual voices [an animal], I would say could you look up some of the history please relating to xyz, I think there’s possibly a cultural practise I’m not aware of but need to know of as it might help me in making sense of something but I can’t look it up in case of images of it. That would be the last thing a mental health professional would do!
    Thank you for your generous words, I appreciate your thinking also.

  • yes indeed!

    You’ve also reminded me of something Stephen, when a friend died. She was on the psych ward and hanged herself, was found alive but severely damaged. I visited her in ITU on a ventilator effectively brain dead, and [despite having no religious leanings] prayed for her to die as I knew she would not want to be left like that [thankfully she did 2 weeks later].
    I was very distressed and didn’t feel able to just walk back out onto the street so scurried into the basement where there was chapel as I thought it would be quiet. A chaplain walked in and came over to me. That dear man did the best thing anyone could have done, he let me rant for god knows how long. I spilled out my rage at how she had been treated in her life – abuse – hospital abuse. How she had been force fed on one occasion for a “teaching session” for student nurses as the sister in charge said they “had too many anorexics” on the ward.
    How we both laughed together when she referred to self-harm via a chicken sandwich [she was vegetarian!]. He listened, let it pour out of me and didn’t try to offer any platitudes he acknowledged how crap it was. I asked him to say a prayer for her because that mattered to Janet she had been a committed christian so I wanted to honor that in her.
    Another thing I wanted to share with you was an admission of my own. I felt that the spirits of my voices had gone into the walls of the ward and I wanted someone to cleanse them. I knew I couldn’t say it to the nurses so I asked to speak to some of the priests [no one questions religion]. They asked me which sort C of E or Catholic, I said I didn’t mind, any bloke in a dress would do. So he came I explained, he didn’t have any problem with it and put his water, cross, thing around the neck, up against the wall and spoke very intently to my spirit voices – really helped.

  • Stephen you’re right about death, this struggle to avoid it at all costs within medicine, except in palliative care where they have an appreciation of having as good a life as possible before dying.
    I see a version of this within ophthalmology, resistance to straight talking about hard issues like the possibility of permanent partial sight or blindness which is immensely frustrating as a patient. They’re hopeless at assisting in dealing with long term uncertainty and will often fudge the statistics. We’re not allowed to say things like ‘Id rather be dead than blind’ as though that statement in itself is denigrating every blind person in the world when it’s simply a statement of your own feelings. Fuck it, I don’t care anymore, that’s how I feel and I won’t apologise for it, I don’t want to be geed up, that’s where I draw the line in the sand.
    What I find so distressing about mental health care is the cover up of enduring distress, where a person is simply left to die because they’re viewed as hopeless cases, effectively terminal, but there’s no psych equivalent of palliative care. Please don’t misunderstand me I’m not suggesting that we take the view that fellow survivors are beyond survival, but I’m sure we’ve all seen people where it’s like watching a car crash in slow motion. A friend overdosed every week for months until her organs finally packed up, she was not given any support, as Prof Gethin Morgan observed it was a case of “malignant alienation” where staff become resigned to a person’s death, don’t like them, expect it, and don’t offer one shred of humanity, in fact one can sense some inpatience at how long it’s taking.
    I watched another friend die slowly over 2 years, she used the tools of anorexia as a method of slow suicide, there was a clear decision on her part in doing so. She gave up because services would not, could not, address with her the abuse she suffered as a child. She was told they couldn’t help with that, all she could be offered was endless re-feeding, so she chose to die by it.

  • David,
    Can we all be aware of everything we think and feel all the time and “regulate” it, and why would we want to?
    I get the stuff about connecting bodily sensations, “affects”, emotions, actions.
    I see that those who have been through DBT are trained to “regulate” their emotions to the degree that they police them to an exhausting degree that it’s painful to observe. I feel sad when I see someone terrified of feeling “too much”, or “too little”, and how they express that, and referring to having a “dysregulated day”. Jesus what a terrible way to have to live, in fear of yourself.

    I understand that awareness of ourselves is a reasonable question, and how do we describe our inner landscape. Not easy but on the whole I think survivors do pretty well, there are wonderfully descriptive accounts. I get what you’re saying about intrapersonal communication as opposed to interpersonal, but I don’t accept you deflecting discussion of the social and political by asking us to view that as being purely about an emotive pasting of our inner world onto the material world, that’s getting into intellectual masturbation territory.

    If you want us to look more closely at our inner landscape and awareness [that’s fine in itself] then write a blog on that specifically. The most important relationship we all ever have is with ourselves for sure, and the greatest freedom we can attain is to be ourselves unashamedly.
    When you enmesh that point into questioning why anyone is questioning the social and the political it simply doesn’t work as a discourse and starts to look like group therapy.

  • what you say about cultural literacy resonates – I remember a workshop a few years ago looking at how training of mental health professionals especially psychiatrists should change. There was consensus that in working with mental distress, practitioners needed to have much wider influences such as philosophy, literature, art forms, social science as you say. Some people also wanted to see Shamanism, all sorts of influences, and for practitioners to be prepared to access ANYTHING if they couldn’t do it themselves. An event I organised once for voices hearers, supporters/professionals included the first workshop of psychic self-defence at such an event. I thought it was important to offer something for voice hearers whose voices are defined as spirits. I had 3 great mediums/clairvoyant healers who offered practical advice on self-protection.
    ‘Distraction’ is a popular approach here, for voice hearing, self-harm, anything, it gets ridiculous sometimes. Even survivor groups have swallowed it with endless lists of ‘have bath, go for a walk’ type of stuff. I know most things have a place but honestly it’s insulting when a young man with a severed tendon [meaning months of physio after surgery] is given a list of ‘distractions’ on leaving hospital.
    I also detest all the ice cube holding, band pinging crap – that assumes a lot, and divorces action from context.

  • Steve have you ever written about therapy? Your writing is accessible, grounded,with thoughtful emotional depth and humility.
    Please write something so I can put it under the noses of UK therapists, it’s either that or napalm…have Richard do a chapter on Can’t Believe Therapist [CBT] and the Psych Nurse Abuse Line number at the end if all else fails

  • Ana don’t apologise what you have to say about psychoanalysis is very interesting you’re offering a different perspective to me because I have to be honest my impression of analysis in the UK has not been that positive.
    It’s very exclusive here, not something many people access. There is one premier institute The Tavistock, I’ve known a couple of people who have attended and worked there. One woman found it really helpful, another said that she found the lack of the therapist talking back difficult. A former therapist referred to ‘navel gazing’. I’ve found some of their conference flyers alarming, take for example one on BPD – which has to be the most maligned patient group of all, jesus my heart goes out to women saddled with that vile diagnosis they are treated like crap. Anyhow the title was ‘Suffering or Insufferable?’ Just imagine if you had that label and saw that..
    I’ve never experienced psychoanalysis so I don’t feel I can express an informed view, just thought I’d share a few snippets.
    What does bother me are the few remaining ‘therapeutic communities’,from what I’ve read, watched in a couple of programme’s, and once on a visit to someone, that really could be described as mental masturbation of the highest order! If I were a patient in one of those places I think I’d end up throwing a chair at one of those therapists. They analysed in the endless group meetings things like why a person crossed their legs. I’d *almost* prefer to be on a psych ward, at least it looks like shit, smells like shit, hell it is! It is exactly what it says on the tin. I was left with an impression of sheer head fucking.
    What is detestable about these places is the use of peer pressure. One renowned place [Henderson, now closed] had this system whereby if someone self-harmed they had to justify to the community why they had done it and if the reasons where not ‘good enough’ out they went. Former inmates sound like they are perpetually ‘policing’ their every emotion and thought, that must be exhausting.
    Currently there are growing Personality Disorder groups in our psych services, I’m getting feedback from someone who’s attending one and I can only describe the facilitated challenging as little more than organised dog fights. These groups are also having people with a diagnosis of psychosis/Schizophrenia dumped in them simply because failure to ‘recover’ is either reclassified as PD [or in addition to] and, PD groups are now one of the few longer term support services available, as everything else is now short term. So a woman with a diagnosis of Schizophrenia on depot injections is thrown into this group by force, if she doesn’t attend, the community mental health team will discharge her and leave her with no support. She has to attend these sessions for 2-3 years.
    I’ve gained a more favourable impression of family therapy, a psychologist I know does this, and she has the flexibility to do things she couldn’t in adult psychiatry.
    She works with a lot of women who have survived abuse as children and she refuses to be pushed by her managers into achieving quick results, she’s of the view that you have to work with people wherever they’re at.
    I worry about the wannabe therapists in psychiatry, whether they are psychiatrists/nurses whoever, those who don’t have a good demeanor and outlook. I remember a very cold fish psychiatrist who I knew to had done training in analysis, I reckon he’d not expressed emotion in years..he would ask every single patient in ward round “do you believe in the Oedipus complex?’. I really wanted to be sarcastic but bit my lip as I was detained at the time.

  • “So it needs more than the collating of information it needs a mechanism to present the information to service providers, commissioners and policy makers. But it also needs to be semething that service users can make use of in an easily accesible way that does not put them under too much pressure”.

    Agreed John

  • Jadzia Dax performance how wonderful!
    To true it’s a very safe programme for children and contains wonderful moral lessons. Use your uniforms in psych activism, it disarms them when you give a serious talk in uniform, they don’t know what to do! I have fantasies of us in security unifoms ‘escorting’ one to the brig..

  • John: “He wasn’t asking me, however my answer is that I barely know what the sentence means”.
    Me neither!

    David: “Can you pause to feel the internal mechanism of your e-motive projections onto the external world?”

    Nope don’t need to because it is external fact which can be evidenced.

  • I agree Steve, I also believe we need to recognise the oppressive nature of the entire social system we’re living in, because psychiatry is a part of it but not all of it.

    The greatest freedom we can possess is the freedom to be who we are.

    Yes, the pretense that what is happening is not happening most definitely is high on my list of “triggers”. Remember the film ‘Invasion of the Body Snatchers’? That’s how it can feel, when you know you’re part of the minority still not taken over and having to act in a certain way whilst outside to avoid getting caught [I like the Donald Sutherland version]. Maybe explains my aversion to plant roots which is really difficult because services/NGO’s have this fixation with all service users wanting to do gardening..”ecotherapy” What is this obsession with turning everything into a ‘therapy’?

    The seriousness in services, oh yes, my voices can misbehave at the worst possible moments like saying something really funny about the assessor so I laugh and then he writes down “inappropriate laughter”. Or two social workers turning up on my doorstep one called Christopher Lee and my voices said ‘so who’s the other guy Peter Cushing?’ [British Hammer Horror stars]. Sometimes even within the gravest of situations there is humor, sure we have to be careful if we’re the supporter because sometimes as survivors we have been laughed at which is no joke.
    Stephen Ticktin is a Canadian therapist [trained as a psychiatrist] who lived in the UK for many years and was a great allie to survivors. He didn’t last long in adult psychiatry because he would take his guitar onto the ward and play it which managers didn’t like.
    Steve helped me escape the bin once, he came in and pretended to be my shrink.
    I remember him describing therapy with a woman – there was a sink in the room and she would wash her hair in it, so Steve thought well I’d better dry it, so he did! Look him up, there are some nice pictures of him with his trademark hat, long beard/hair, real hippy.He had a lot to do with Cooper and Laing.

  • Thanks Richard I was thinking exactly the same thing a couple of days ago, why has Jill not responded further? This has been a very important thread, these issues I view as important as discussing physical damage by psychiatry, because therapy can be viewed as the nice alternative but it isn’t always and the potential to commit psychological GBH can be as damaging as the physical. People can die in part due to that kind of damage or lack of meaningful human engagement. Equally lives can be saved by ‘walking alongside’..and of course there’s the sea of mediocrity in between.
    Many people here have the good grace to be open to critique and yes people’s personal experiences should be honored by acceptance of taking responsibility of answering to our claims and being open to exploration of them – even if they remain the same afterwards. Sites such as these shouldn’t be a mere receptacle.

  • Yes Jonah I think it is useful for us to say something of our inner landscape, experience in the material world, immediate stressors, as they all inform what we say, how we feel. I hope your family health issues are less acute.
    The divide between ‘support’ and ‘discussion’ sites is never completely clear cut. I’ve been a moderator on a support forum where there was serious activist discussion, and likewise on a history forum there’s been discussion of personal experience. Ok essentially sites have a clear bias one way or the other, but I believe it is not only useful but essential to veer a little to the left and right of the dividing line as our painful experiences shape us in part as activists.
    We’re emotional beings and I’m glad there are people who are very informed with references of hard evidence which are needed but I also know that we can touch people [including medics] by other routes. I remember Richard saying something about crying with a client over their dead dog, and when I’ve used art forms to convey mental distress, I’ve found it’s made some psych staff stop intellectualising and face the emotional reality of human pain because with art forms they can’t hide behind their ‘evidence bases’ and have to look at their emotional responses, it’s a leveler.

    That’s powerful what you say about your younger years, feeling responsible for others happiness is a heavy load for a young person, and I relate very much to what you say about needing to save the world .The need to help affect positive change is a powerful drive, and although not unusual in itself I do believe our struggles are not the same as sitting in a Greenpeace boat in front of a harpoon. If I hadn’t gone mad I probably would have been an activist in some shape or form, even as a small child I went around my school with a petition to stop the forced smoking on beagle dogs for lung cancer research and had no problem with standing alone in my position on whether to save a certain building or not, but what we do does have a different impact internally and externally. I guess it’s the last civil rights struggle, but it’s the hardest because ‘mental illness’, how it’s viewed, responded to, how societies and governments use it and define it is like the raspberry ripple of an ice cream, maybe it’s even harder than race – although I’d really like to hear perspectives from black minority ethnic survivors on that. I’d like to see a blog by a black survivor on race and madness and their perspective on activism, the similarities and differences given they experience a double whammy in services.

    Ps Borgs are one trek character which are fun because we like a good ‘baddie’, equally I’m at home in Starfleet uniform saving the universe from them!

  • “The most vulnerable new groups for objects of the projection process are probably welfare recipients and the poor”.

    Yes David, it’s shocking what’s happening here, and there are of course psych survivors who are poor/welfare recipients and you know many fear the draconian assessments with the real risk of losing homes/basic income more than being detained in hospital – no kidding.

  • amen to that Steve, I love reading your writing, you always convey some gem about real world living and feeling, and your descriptions about the value of different emotions and states makes sense to me. I think it was Pat Deegan who wrote about wall staring and how this is always framed as a ‘negative symptom’ but for her it wasn’t, it was actively doing something, maybe protection, so wish I could locate that passage [I’m crap with references].
    Anger – now I’m of a mind that most of us would not be here right now unless we had gotten angry about what’s happened to us. I remember my rage in writing my ‘Do you think you’re God?’ letter to a psychiatrist and then walking out of the day hospital because I wasn’t prepared to accept depot injections for life [and I hated sewing up white fluffy rabbits for OT, I couldn’t see the needle so kept stabbing myself]. I had to get angry, and yes at times it was like projectile vomiting and you do need to find ways of channeling it, but my god you need it.
    Speaking of homicide may I recommend blue tac effigies as ‘voo doo’, and I used to run the Psychiatric Nurse Abuse Line where they could get 5 mins or the full half hour of verbal abuse.
    Dark humour, that’s something many psych professionals cannot cope with – a mate is in this group where they have to pick up bits of paper and say how they feel about the words/phrases on them i.e. ‘negative is just a perception’. So we discussed her taking in her own bits of paper with different words/phrases like ‘this service recovery policy is a load of wank’, or ‘Kill XXX [letters of a hated politician] NOW!’
    Or for the self-harm group – Self-Harm Sindy Doll with stick-on scars, and a print out of online medical supplies. Sometimes a bit of subversion helps..
    I shall miss this place, will be away for a couple of weeks this weekend and can’t do mobile technology. This has been a really important blog, sometimes the most contraversial views can bring out the best debate and discussion, so wish I could meet some of you. We need a MiA roadshow..Steve and I could manage the Rant Room [with cheap crockery smashing]

  • Lol thanks, it’s good fun David, hadn’t done it in over 10 years, makeup is water based cake, the purple is just blended eyeshadow. I think the guys look magnificent as Klingons, gives them a safe and playful way to be macho. It’s quite good taking costume out of context, many years ago I once gave a talk alongside a very straight laced psychiatrist in full Starfleet uniform – you should have seen his face, he didn’t know whether to shake my hand or section me.

  • I can see what you’re saying John, use the work that’s good, and his SSRI work for example is good, I’ll hand it over to anyone thinking about taking them and say read this first.
    I don’t support the use of ECT and holding him to account on that is perfectly legitimate, but I think – I dunno maybe it’s a British thing -some of us will use work which helps our cause even if we cringe at other things a person does. It comes down to this – there are very few professionals we could hold up and say yep this person represents 100% of what I believe in.
    I’ve worked with people where it’s been a 80/20% difference but I’ll grab that 20% common ground if it helps us.

  • Hey thanks Jonah, for extending your hand as a survivor to me as a survivor, that means a lot.
    May I share something personal by way of explaining something of my ‘overwhelm’ sometimes.
    The suffering around us and the excruciatingly difficult decisions within that I can soak up like a sponge to the point where…I don’t know if you’re familiar with the concept of the ‘sin eater’..I can’t properly put this into words because it’s enmeshed with my voices but also a part of me in relation to the world. The general ‘unfeeling’ in people about many issues – I’m speaking generally not about you – I can’t grasp it, it’s like when you’re on a train, someone dies on the track [suicide] but people around you make comments about how pissed off they are because they’re late/how selfish, and I want to scream out ‘they’re someone’s brother/sister’. I’ve seen some of my friends die unnecessarily, through traumatic experience, psychiatry, social circumstances, and I rail against the unnecessary loss [not the loss which was right for some people, as right as it ever can be]. I don’t know if this makes sense it just matters to me that you know my ‘overwhelm’ sometimes is about feeling so much about the state of everything. Sometimes I have to stop myself from screaming out to people on the street or when over hearing them at a bus stop when they pass comment about ‘that community care case’ or ‘those down and outs’..why don’t you care, how can this not matter to you??
    I know that I can carry this like lead weights around with me, and sometimes it’s frankly exhausting.

    I accept your point about overkill, maybe I can misplace some of my anguish within other things or people, and if I did with you, please accept my apology.

    I really do appreciate where you’re coming from about forced meds, and I can understand you not wanting to be around anyone who does, I feel that way about some things too. The only difference we have on that issue is on potential loss of life where it might be of the ‘unnecessary’ variety. As I said, it’s something I wrestle with massively – it’s a gut human response I have, not one of ideological righteousness. I so wish I knew what was right..

    Anyhow, I want you to know that I understand a little more about you, where you’re coming from – and that I value you.
    I sometimes think we learn more through the differences and challenging of each other, all of us are individually and collectively carving a really hard path to make it easier for future generations.

    Now may I be nerdy and hopefully raise a smile for you – 3rd picture at the top in the gallery, the ‘Borg’ – that sad git is me.Have a good laugh at my expense: http://www.startreklondon.com/gallery?limitstart=0

  • Everyone would have a better diet with enough money to eat, here people are being cruelly sanctioned and left with no income for months, some people are facing the prospect of starvation, I can’t even believe I’m typing this but it’s true [if anyone doesn’t believe me I can offer enough links I’m just tired right this moment.
    Brain inflammation is very interesting but I think we need to concentrate on basic income/housing first, let’s get that right! Then we can look at brain scans and formulas.

  • “So what mechanism could a service user use to enable their feedback on whether the service provider was interested in the cuase of thier distress be feedback into the system?”

    John, you raise the most important point to be addressed by all of us. Maybe we should look at making that happen. Just imagine a few central places online, by post [not everyone has a computer, or the skills to use one] in all countries willing where all service users willing could feed back in their own words what they feel caused [and maintained] their distress.
    If thousands of people feedback it would be an irrefutable massive evidence base.

  • Lets get nerdy! What grabs you about trek and have you ever dressed up?
    I love trek because it’s such a beautiful vision of the future, I like the characters which struggle to be more or less human as they offer us something about ourselves, the moral dilemma’s, and I love that some aspects of the science have been reflected in real life. One of my fav characters is Borg, a relative helped me put together a costume with circuit boards, telephone cables, bicycle lights, a bit of under sink plumbing, and umbrella spindles. It’s really liberating to get into an image where you are unrecognisable so that enables an anonymity but at the same time a freedom you can’t normally have, plus it’s good fun getting into characters, a playful light relief from everyday stresses. Trekkies come from all walks of life and – deep breath – a lot of health professionals like trek, but that can be used to an advantage in speaking. With medics if you start off with a cultural reference, humour and then sock it to them, it’s a useful strategy. So ‘transporting’ yourself to a lectern, and you can even have fun just walking around, scanning with a tricorder..’your neural pathways are degrading’..’what’s that mean?’…’you’re fucked’..

  • aww bless you, yes I reckon many of us find reflection difficult for many reasons, but at the same time we all have a physical identity no matter how much anyone says they don’t care what they look like. Mirror image can be so different to a photograph too, and what we see is not the same as what others see. With physical visual distortions that makes it er interesting [there are a couple of papers about my condition and psychosis so I guess I could say that my eyes drove me mad..]
    I am one of these [anyone laughs my phaser is set to kill]:
    http://www.startreklondon.com/gallery

  • I heard of someone talking back to their voices in a mirror.

    I have a love-hate relationship with mirrors because I have a visual difference [physical but I won’t bore with med history] which means that I sometimes walk into mirror/glass surfaces and if it’s a ‘bad eye day’ not recognise myself – I wouldn’t mind if it were a case of wow she’s attractive oh it’s me, but it’s typically bloody hell who’s that old bag, shit it’s me!

  • Yes Stephen, we must always feel privileged when someone has the courage to tell their story, with the example I offered I waited 13 years until she felt able to say it. I always knew from the moment I met her but sometimes it takes a long time, and even then saying it doesn’t automatically mean survival. Most of the friends I have lost by suicide experienced abuse in their youth and as you commented not everyone can survive their traumas [whatever they are]. This is why it’s important to me that ‘recovery’ narratives are not too reductionist – get out of services/off meds, and that’s it. Some people have enduring difficulties and need assistance to live with them, if we fail to recognise that then we do no better than a psychiatrist saying you’re incurable.

  • Hi David, certainly wouldn’t ignore our biology and it’s chemistry in reaction to experience but not as a fundamental cause, the endorphin theory can be used by professionals as an ‘explanation’ devoid of all context, just as the ‘biochemical inbalance’ line with ‘psychosis’.

  • cannotsay
    “I am with Jonah here, 100%”.

    You’re 100% with anyone who disagrees with me, it could be anything.

    “Jonah has been very respectful in all his interventions”.

    No Jonah has not otherwise the moderator would not have felt inclined to say something, but you would say that of anyone who disagrees with me, it could be anything.

    Very obvious pattern, happens on most websites with discussion, there are always people who do that so it no longer bothers me because I see it for what it is.

  • ‘Compassion’ was not meant specifically in relation to my criminal justice system comment [which was to anyone] more about inviting you to comment on issues such as these along with forced containment/drugs where you don’t tend to offer a view on what you would do. You questioned whether I care, cast me in a certain light, when you thought I agreed to your views I was recast, you shift pretty easily.
    Before you comment on my not being clear, may I remind you that you made several incorrect assumptions yourself about me which we cleared up earlier.
    ‘Humility’, because you effectively called me a stupid waste of space and that is not conducive to persuasion or learning, I know you’ll not apologise for that. Your communication style can come across as arrogant, asking questions you think you know the answer to with a sarcastic edge, belittling, you can paraphrase, and pull apart every word and sentence structure. You’re adversarial in a way which would be great in a public debate with a psychiatrist, you’d wipe the floor with them, but I am not your enemy, nor the enemy of fellow survivors, you’re quick to be judge and jury on people.
    At least I’m prepared to take the risk of putting thoughts out there as I wish to broaden my thinking, you often don’t give people a chance to breathe and reflect. I know that you wouldn’t view me as offering anything you could ever take something useful from, but your communication style can makes it difficult for others to learn from you..your attitude gets in the way.

  • I don’t view this as a ‘massive breakthrough’, I guess I view it like any other ‘intervention’, in that it will have a place for some people but isn’t and shouldn’t be a set up as ‘The alternative’ to medication/CBT or for the “treatment resistant”.
    It’s just one more thing which some people who wish to attempt to eradicate their voices simply by becoming more assertive and saying ‘go away’ might want to try. For those people who wish that [and we can’t deny those individuals] then let them have a go. I guess my nagging fear is that as with any psychological intervention it still comes down to the skill, attitude and humility of the therapist and psychological therapy of any type has the potential to be very dangerous in the wrong hands.

    I support the use of Voice Dialogue, everything has a place, I couldn’t personally get on with it because I couldn’t get my voices to speak to another person on demand but that doesn’t detract from its value for others, I know it’s a good tool for some people.

    For voice hearers who wish to understand more about the meaning of their voices; origins, evolution and context, then changing the relationship between them and their voices with assertion alone Avatar Therapy will probably be unsatisfying.

    Not all voices require a physical form for some voice hearers, and for those with visual voices who already have form, using an avatar could be as dangerous as flooding, akin to putting someone with a phobia of cats into a roomful of them.
    Some of my voices are visual [an animal] and as it is when I see one in print/on the TV I can at the worst run out screaming. How the hell would I cope with a talking avatar of the animal voices I most fear? I’d probably smash the screen [then the therapist].

    It wouldn’t work with tactile voices and it wouldn’t work with paranoia which can’t really be given a form as such.

    I did find it useful to make a recording of some of my voices using my voice and other people’s [with a script of the words/phrases] with fairly simple recording equipment. I would have liked to have gone further and had access to a recording studio for more specialised sound effects. The reason I found this useful is because I could play it to others and say ‘this is what it’s like’, and this was only one tiny sliver of a snapshot, not the full range.
    Every voice hearer I played it to said OMG that’s so realistic, as it shared similar qualities.
    This sort of thing I’d love to see funded – voice hearers wanting to record their voices having access to a studio to do so for recording for their own use [and with their permission for teaching].
    I’d call it the Voice Soundscape Project, I know I’ll never see it happen, but I can dream…

  • Yes Matthew, that is what I’m saying, that we have to address the “mad/bad” arbitrary divide, some of the crimes are also not major, there are far too many people in prison for low level crime when they simply need social and psychological help. I’ve said before that psychiatry does not exist in a vacuum, there needs to be an overhaul of the criminal justice system, health and political systems

  • Some food banks are now turning away those who have been sanctioned and those deemed to have “chaotic lifestyles”
    There is currently one person on hunger strike because of issues such as these.Whilst optimum nutrition with preventative/healing qualities are a nice discussion for many people who cannot consistently afford good food it’s just not relevant, they’ll take any food to stave off hunger. The fact that this happens in a relatively rich western economy is shocking to me.

  • So you tell me what you would do then Jonah?

    If you’re a survivor not condemning millions to misery in stupid ignorance like me you tell me what you would do if faced with a situation where sleep or an IV meant the difference between life or death?

    Got any comment on the insanity plea as well?
    Should those women just go to prison and screw what they’ve been through as abused children?

    Where is your compassion [and humility]

    ps don’t sign “respectfully” unless you actually mean it

  • I referred to the most extreme of circumstances which many taking absolutist positions often refuse to look at as though they don’t exist and simple black and white answers of live/die/sink/swim.

    My views are not carved into tablets of stone, I’m open to evolving but it’s ahuman response Jonah, I can live with disappointing you with my honesty which you can write off as ignorance.

  • David, my ‘dissociation’ occurred in direct response to abusive medical treatment, not before or during self-injury.
    I separated my mind from my body as a protection from that abusive treatment, that’s not uncommon to victims of assault.

    I think shaking also occurs with an overload of adrenaline [act of injuring, lack of food/fluid after, waiting for treatment in extreme fear, painful treatment], it’s physiological shock.
    ‘Freezing’ I understand having experienced what was called catatonia in my youth, I’ve described that as an extreme concentration of fear, where it appears externally as though the lights are on but nobody’s at home but it’s a retreat into the core of oneself until it feels safer but underneath that waxy flexibility it’s frantic.

    Ps
    endorphins – there are endorphin theories about self-harm which I don’t support because 1] there’s no loss of pain or sensation for many of us 2] it’s biological reductionism which [like biochemical theories of psychosis] cannot be proven unless we’re going to measure endorphins under scientific conditions before/during/after self-harm and compare to non-accidental injuries.

  • Yes Sera, this is why there is so much more than biological psychiatry to call to account, some of the ‘alternatives’ such as therapy, ‘psychological interventions’ and recovery must be examined too because words have the power to denigrate and kill the soul as well. Killing a person’s spirit can be every bit as fatal as destroying a persons body with physical treatments.

    Before I was diagnosed as Schizophrenic/catatonic my first admission was to an EDU and I saw group behaviour modification result in patients force feeding each other whilst the nurse watched impassively one day. Patients were no more to blame for that than Jews staying alive by ushering others into gas chambers. It was done to avoid group punishment and with no discussion, it just happened. I was in that group of women, and even though it was 30 years ago I still carry the blood on my hands of which I cannot forgive myself and cannot ever be at peace with. After that day that’s when my first act of self-injury happened and it felt like the sanest thing I could. With group behaviour modification you cannot express dissent or everyone suffers so the only avenue left to silently scream is to yourself. Even now saying these words evokes such shame and guilt.

  • “It requires humility, flexibility, and compassion, as well as patience and confidence that the client has all the information that you need to provide them the support that will help them move forward. Inserting your own theoretical beliefs or allowing your own needs to enter into the discussion is destructive in every case, regardless of what those beliefs may be”.

    That statement Steve says it all for me about what any professional supporter should be aiming for. In my experience at events over the years it’s often been therapists who will argue that this is ‘not enough’ and that people must have a specific intervention, using their theoretical beliefs, and that it’s not possible or right to approach someone with a ‘blank page’. I always remember reading something by former hostage Brian Keenan who spoke at an event for therapists and ended up leaving because he ‘couldn’t understand a word they said’!
    Anyhow my main point was to say you’ve captured the essence of what I feel it can be at it’s best.
    My only experience of therapy in my youth was strange, I’d look at the floor and he’d look out the window and then 30 mins later would say ‘see you next week’, and this went on for several weeks – I didn’t realise I was supposed to talk because psychiatry had taught me to only speak when spoken to and to expect verbal dissection. So I simply didn’t realise I was allowed to talk, however you would have thought he might have said something to me..

  • There are many links I could post but here’s one:
    http://www.thefedonline.org.uk/disability-in-the-news/disabled-people-are-being-forced-to-scavenge-for-food-from-supermarket-skips

    A good diet is just not achievable for everyone because they can’t afford it [nor the supplements], they can’t get to a market to search for fresh fruit/veg, they don’t have a garden to grow any in a high rise block. Over 2 million people in and out of work have been subject to welfare ‘sanctions’ [for which there are denied targets]. Sanctions, delays in commencement, and the low paid are having use Food Banks which only offer tinned processed foods, nothing fresh. The cheapest foods are often the worst with 3 for 2 deals, and for depressed people with less cooking ability the McDonalds £1 menu is where it’s at.

  • Yes Francesca, I’m sure even those with the most robust sense of worth wouldn’t desire anyone thinking of them as a waste of space.
    You too eh..shall we set up The Incurables Club?!
    Sigh yes, ‘finding alternatives’ is not such a straightforward journey and psychiatry isn’t the only obscene power struggle at play in our lives. Maybe the journey is more about finding acceptance for wherever we are and for whoever we are.

  • too true Dean, I’ve witnessed such crassness in other venues such as Emergency care, where the assumption is anyone presenting with self-injury must have been sexually abused. I’ve even experienced a psych standing at a doorway informing me that “most people who self-harm have been abused, I can arrange for someone to talk with you, and if you don’t staff will see no point”, then walk off, before I’ve had a chance to reply ‘but I wasn’t abused as a child’.
    The survivors I feel most deeply for are those who have had their self-harm and/or experience of abuse defined as BPD. They get such a shit deal with doctors casually saying ‘been abused, right ok..’, with demands to know on the spot what was touched and what was put where. Friend who was once in a homeless hostel experienced this with the attached therapist as though people can just slap this on the table on demand. Frankly it can be a bit creepy and voyeuristic the way some therapists enquire, feel they have the right to know without the build up of any trust, and insist on ‘correct’ anatomical terminology refusing to accept survivors euphemisms. That really bugs me because it’s not difficult to work out what a person is saying and if ‘pink thing’ and the ‘hurt which bleeds’ helps a person speak of anal rape more easily why can’t we just listen?

  • Yes meremortal, I keep speaking of this enforced positivity because I’m seeing this within psych services through their perverted versions of ‘recovery’ but also within NGO’s and some survivors/groups within their versions too. It’s as though it’s become shameful to say anything less than ‘I am recovering’, or ‘I am recovered’, or ‘I’m a recovered XYZ’.
    Most of the ‘user involvement’ work within services, and conferences/workshops only want ‘recovery stories’, it’s like we’re just not allowed to speak of ongoing or enduring difficulties, or it’s framed as our sordid personal failure. It’s become a culture of denial as you say, and that’s rippling out. It’s even wider than that Barbara’s ‘Smile or Die’ is such a great little film.
    I also do not believe that trauma is the only cause of ‘psychosis’ and I question what we mean by trauma because for a while it did appear to me as though it meant childhood sexual abuse and little else because that was the main example cited. The term has been broadened now, I believe partly in response to those of us saying this doesn’t mean one thing.
    Living under capitalism and sleep deprivation are good examples. Completely support your analysis on the trauma discourse.

  • Alex, I get what you’re saying about how trauma can inform our paths in life, I’m quite certain there is work I’ve done which would never have happened without what I’ve experienced and witnessed. As for ‘learning to not be a victim’ and reacting differently that’s a tough one, I’m certain that if someone hit me it’s going to hurt the same each time. How I handle that might evolve but the feelings they evoke are not likely to change.
    A doctor years ago who I saw a lot of in Emergency with self-inflicted injuries would always stitch me deliberately withholding pain relief. If I showed any expression of physical pain or distress he would then shout at me and be verbally abusive. So I learnt to not move a muscle, I ‘dissociated’ so that he could cause me as much pain as he wanted but I would not react at all, because that was the only power I had in those circumstances, to not give him any further excuse to be abusive to me. So although I couldn’t stop him from denying me pain relief, I could deny him any further attempt at mistreating me. At a later point I decided that no one was ever going to do that to me again, I had the same right to pain relief as any other patient, and now, if it came to it, I’d walk away and seek repair elsewhere if I had to, I wouldn’t allow myself to be subjected to the deliberate infliction of pain because that’s torture.
    As a footnote – the irony is that ‘dissociation’ is commonly associated [by professionals] as occurring before self-injury when for me it never has, but it sure as hell can happen after in response to treatment.
    I’ve also noticed that my whole body can shake uncontrollably, it’s clearly a physical reaction after any treatment, I guess the muscle/body memories are quite hard to change. This can happen even if my mind/emotions are relatively calm.

  • I’d also like to say something further on the ‘insanity plea’.

    I feel there needs to be some provision within the criminal justice system to recognise a crime committed within extreme distress from premeditated cold blooded maliciousness.

    I say this because of the women I met in our high secure hospitals years ago [we have 3], their words and lives remain burnt into my memory. Some had committed arson but ensured no one was in the building. The fire service ‘save’, whereas the police/ambulance service can manhandle/cuff you and convey you to a cell/hospital. I know we can pick holes with this rationale but I’m relaying their words.
    They had typically been victims of the most horrific crimes as children, many had no one outside, had been let down by social services, and it was a like a form of ‘self-defence’ against a world that stood by and did nothing, and a very desperate cry for help, well a bloody big scream really.
    They had committed a crime. They should not however be in prison, they don’t belong there, they need help.
    They also don’t belong in a high secure hospital being drugged up for years. So this is why I can’t go with an absolutist position of go die if you want/go to prison if you commit a crime, because there are shades of grey, and that’s one of them.

  • That’s ok Jonah, we can all misperceive sometimes.

    To clarify further on the forced drugging issue – because I’d like to – although we’re often referring to forced injections, being pinned down, pants down, needle rammed in – yes I’m against that – but there are other ways to force drugs or give without knowledge and clear permission. For example liquid form drugs in a cup, or put in a drink.
    In my stated position that there are some very limited circumstances where I feel it is reasonable to detain a person for a short period [I don’t know who should take that decision], let’s say I’m looking a 14 yr old anorexic close to death or someone close to serious physical breakdown because of sleep deprivation then I can’t rule out that I wouldn’t agree to using a cup or put it in a drink as a means of inducing sleep, get an IV in.
    So that is a form of forced treatment, I won’t delude myself otherwise, could I do it myself to someone? No. Do there need to be people who can? I think so. This doesn’t mean it rests easy with me, it doesn’t, but then it shouldn’t.
    I’d have to weigh up can I live with the least violent means of saving a person’s life, or can I live with the person’s death when that might have been saved. I’d probably have to go with living with the guilt of using the least violent means to save.

    Yes I do care a great deal, and not solely about the state of psychiatry and my fellow survivors, but also deeply about the state of my country and what is happening to citizens, I wish I could switch off sometimes because I can end up feeling saturated with the distress all around me to the point of feeling ill. My voices can then grab it and hold me responsible for global atrocities.
    My user name was quite by default, I’m not that media savvy, and when I registered I put in a first name and assumed I needed a surname too, I just looked at the nearest paper to me taking the first word I saw ‘care’, it could just as easily have been ‘cupcake’!

    Thanks for hearing me out

  • Jonah

    “You seem to be attempting to respond as a proxy for Dr. Thomas — but I’m unsure”.

    No, I can categorically reassure you that my views are always my own, I wished to say to him that I supported his position, just as I have have with other writers.

    “you are presenting yourself as a professional “care” provider;”

    I am not a paid professional care provider, I am a psychiatric survivor, activist, and many years ago [20] worked in ‘service provision’ in a NGO and the NHS as a non-professional care provider but ended up leaving as it drove me mad [I was not prepared to lie to anyone I worked with and was not able to do anything against a person’s expressed wishes].
    Otherwise the support I have offered friends and other survivors has been unpaid; advocacy and simply ‘being with’, listening, practical asssistance.
    You can judge me as to whether I am ‘caring’ or trustworthy as you so wish.

    “Absolutist positions can sometimes appear familiar…” etc., is truly unintelligible, from my point of view”.

    That’s easy for me to explain, here’s a simple example – biological psychiatry = you have a biochemical imbalance take these drugs and get on with it, and the mafia end of recovery = you must not take drugs/take professional support/take any state support.
    Two fundamentalist positions. If you haven’t come across it, I have, you can choose to believe/disbelieve.

    “You say, “Support your views Phil” (to Dr. Philip Thomas is not doing enough to promote his own positions); i.e., it seems to me that you feel Dr. Thomas should be more fully expressive of his views, than he has been, on this page, by this point in time”.

    You’re over analysing, I say to many people when I support and don’t support their views. It’s entirely down to those individuals as to whether they express more.

    “I.e., I wonder, simply: Do you, in fact, advocate *forcing* psych-drugs upon some people”.

    I’ve never advocated forced medicating, but I am saying that there are very limited circumstances where it may be necessary to strenuously persuade a person to consider taking something for a few days i.e extreme sleep deprivation but I just couldn’t see anyone held down and injected. Likewise, a teenager near death because of anorexia needing some immediate life saving i.e. glucose/electrolyte correction, if you’re asking me would I see that young person held down to get an IV in I’d have to say no, but could I live with their death on my conscious? I don’t know to be honest. These sorts of questions are not easily answered YES/NO, maybe they are for you but not me. I agonise over them.

    Do I think there is sometimes a place for very limited short term detainment in extreme circumstances without forced treatment? Yes I do. Who should take that decision, I don’t know.

    Judge me as you wish, but I won’t apologise for not having all the answers or the “right” answers according to you

  • That’s true Duane.
    Those words made me feel bad for so long, like I was inherently and irretrievably a lost cause, and that was said to me after surviving a suicide attempt.
    I did heal from that, probably sheer stubbornness on my part, but I have had that reflected to me again in later years for my failure to ‘recover’ ‘enough’ – the power of words..but then someone emailed me and told me that something I’d written years ago ‘saved their life’ and that just stopped me in my tracks, that my words could have had an impact on someone else in such a positive way. I was humbled.

  • Wyatt, I’m so glad I read your blog tonight, I’m not feeling good and your writing uplifted me, I felt such pride like Sean and my eyes welled, but in a good way, and I feel very much enriched. There is a hospital I attended for surgery which also happens to be one of the centres for surgical gender reassignment and I remember sitting in the cafe one day and noticing a woman who had clearly been born biologically male and people’s reactions to her, and I so wanted to somehow say ‘you’re ok ignore the jerks’, so I just smiled like you do when you see someone you’re saying ‘hi good to see you’, as I didn’t know what else to do, but I so wanted to reach out, that hour is ingrained in my memory and you reminded me of that.
    Thank you for sharing your experiences, you’re fab!

  • “..I don’t want to deny people the chance of being able to talk about it either” – that’s my position too.

    As for nothing short of GBH or death can be worse than anything non physical that really smarts. I was a victim of stalking and the long term consequences of this mean that posting here at all is pretty amazing given my ‘paranoia’ even years on can mean I am scared in my own home with the curtains drawn. I don’t choose to feel this way. Walk in my shoes..
    I know my experience is nothing compared to survivors of child sexual abuse, I’ve lost several friends by suicide because of it. One had to take taxis everywhere because she was so afraid of being recognised from child pornography, don’t you dare say Jill that she choose to be that way, she fought SO hard to live with her experiences and transcend them, I never saw such fight in a person.

    I truly grasp it when a woman says to me ‘it would hurt less if he hit me’ – domestic violence and rape charities could explain this to you very easily.

  • “… On the issue of whether abuse can cause distress..”

    pretty well established abuse does cause distress Jill, and it’s not a ‘choice’ to remain miserable, that’s called trauma.
    You’re doing a pretty good job of ‘deciding’ for others what it ideally should be with your enforced positivity stance.

    I find your views no better than any hard line medical model psychiatrist saying ‘biochemical imbalance live with it’ attitude. In fact it’s worse because at least with a hard line medical model psychiatrist it looks like shit, smells like shit, it is shit, but with talking you’d maybe expect there to be more humanity and desire to validate.

    You prove your argument most ably that talk can cause harm – you demonstrate it to us.

    JeffreyCon – it isn’t always choice, many behavioural interventions using talk and peer pressure can used whilst detained. People here are being forced into therapy groups on threat of discharge with no support, these are some of the most damaged and vulnerable survivors.

  • “Healing is all about self-responsibility, and not relying on others by paying them to be a ‘best friend’ or ‘benevolent parent”.

    I must disagree, it isn’t like that for everyone, and healing being self-reliance? We ALL rely on each other, few people are islands!

  • oh please..this isn’t about physical ‘treatments’ and of course lobotomy is going to be worse than pretty much anything but people are damaged by words [and lack of words]. A woman asked in a “therapuetic community” by the therapist whether she had ‘enjoyed’ being raped by her father as a small child. The overdose which put her in ITU nearly killed her.
    Diagnostic insults have made people suicidal, seen that so much with BPD where the words, no letters, have been to quote a friend “worse than forced ECT”

  • “I’m going to try to be as respectful as possible… Here goes:

    Ironically, I think you made a good case for the harm that can be caused by psychotherapy… particularly when the values and personality of a therapist do not match those of the person seeking *support, understanding, validation and empathy*.

    You’re more charitable than me Duane, my jaw is still on the keyboard, I’d say that ironically Jill has demonstrated the case for the harm that can be caused by some psychotherapists by actually demonstrating it..

  • “If one isn’t dead, then move on to what you want to accomplish in your life”.

    Be rubbished by psychiatry and permanently labelled in your medical notes which impacts on every contact with healthcare and see how easy that is to do.
    The words of abusers to children can be a lasting imprint and I can think of a couple of friends who would give you very short shrift on this – they ‘moved on’ but their suffering remains prominent

  • I have to say Steve, in my personal observation, out of all human experience what has always stood out to me as the most potentially catastrophic experience in terms of longer term distress is child sexual abuse – even with decent responses and support. The amount of physical force doesn’t wholly determine the level of distress because I’ve seen some survivors who have experienced the very severe end of physical force [and over many years] ultimately find that what the perpetrator said, the words, to be the most crippling and tormenting.

    Many victims of domestic violence will also cite the verbal abuse and humiliation as the lasting trauma, and sometimes even worse than the physical.

    Stalking for example may involve no physical violence but the long term impact can be devastating

  • Support your views Phil.

    Inarticulatepoet – lack of social supports – even with them sometimes that isn’t ideal and doesn’t work out for everyone. Yes there are some circumstances for very very limited use of short term detainment and use of medication [not of the holding down variety].

    Absolutist positions can sometimes appear familiar to what is purported to be fought, just the flip side of it [recovery can be a fine example of that].

    ‘Necessary’ Jonah could mean severe sleep deprivation at a level there is serious physical decline, or a young person who’s eating distress is close to death, or a person who is visibly and immediately a danger to someone else whilst in a state of differences of perception/mistrust, a danger to self in a way that is potentially lethal but not intended to be so i.e. self-harm without suicidal intent but using methods of lethal risk [paradox but it happens]. Very short term i.e. for sleep, get an IV in, for dire emergencies but not endless forced drugging forevermore.

    No one is the bearer of the absolute truth for everyone.

    This bizarre term ‘socialised medicine’ reveals much about some deeply ingrained American fears [thankfully not all]

  • “Biological Psychiatry must be challenged and defeated, but this will not fully happen without major systemic changes in our political and economic system”.

    Amen to that Richard, why is this so hard for some people to grasp

  • You make a very important point Sandra, the whole of medicine needs healing, not only psychiatry.
    I have experienced what I can only define as torture within Emergency services [and resulting medical and surgical ward treatment] because of the objectification of distress; being sutured with no local anaesthetic as a punishment with verbal abuse and shouting if I so much as flinched [but use of LA recorded in notes], demands for medical photography of my injuries for no clinical reason and cursing my refusal with further punitive acts, plastic surgeons ripping off dressings adhered to wounds with no skin not bothering to loosen it with saline, being offered no choice about type of procedure despite one preserving contour of a limb and the other not doing so, being left half naked on a trolley with no regard for my bodily privacy, being talked about in the 3rd person with jokes, ridicule, with no knowledge that this precisely echoes the voices I hear. Watching instruments being dropped on a blood stained floor and picked up with no change of gloves, skin sutures used on injuries to the bone with no repair of underlying layers, sloppy clinical practise resulting in pre-gangrenous wounds where an area with clearly no blood supply was sewn back in rather than a proper debridement and closure, complete refusal of treatment on grounds of self-infliction resulting in having to go to another hospital, these are not my worst experiences and in terms of humiliation, and the interface with psychiatry [liaison services] that’s a whole other list of its own, these are just a few examples of poor medical treatment because they were treating a mad person whose actions they disliked and feared. Yet when medical students have the opportunity to listen to survivors, ideally very early in their training, it does make a difference to some. Medical education needs survivors talking to them, mentoring them, shadowing them along with clinical mentors because being human skills are just not taught, and although some can’t be taught we can help to train doctors in not making a disaster out of a crisis.

    Jill, what you say about expense and outcomes is striking, I’d be interested in your thinking regarding Biphosphonates because I’m highly likely to be heading in that direction soon. If you could post a link of something relevant I’d be most grateful.

  • what a sickening statement by Nemeroff, I’ve seen women become suicidal because of the weight gain. This effect is always downplayed with diet sheets and patronising healthy eating/exercise advice offered without any recognition that the drugs alter glucose metabolism and it’s a losing battle on that front whilst on them. Then journalists often pass comment on survivors being overweight without knowing it’s iatrogenic

  • If they still go ahead maybe a physical protest at the venue?
    You know it would also be worth informing organisations who work with child and adult survivors of abuse, I’m certain they would also support protest

  • “the cutting was an action, and the suicide attempt was an inaction, like it was giving up instead of doing something”.

    What an interesting description of self-injury

  • “Some individuals engaged in self-mutilation (these days we call this self-harm, often seen in people struggling with regulating their emotions)”

    ‘Regulating emotions’ is code for the Borderline Personality Disorder smear and just because diagnostic systems decided to place that action within that diagnosis and make it part of the qualifying criteria that does not mean that self-harm is synonymous with BPD. In the UK people [predominantly women] can get saddled with that diagnosis purely on the basis of 1] history of self-harm 2] any known history of child abuse to the degree that now anyone who self-harms is highly likely to get that diagnosis even if they don’t “fit” any of the remaining diagnostic criteria, or in addition to any other ‘illness’ diagnosis specifically to ‘cover’ that action. It’s the hearing voices means Schizophrenia equivalent so it is not helpful to imply that self-harm is often seen ‘in people struggling with regulating their emotions’.
    People self-harm and can have no diagnosis or ANY diagnosis from the DSM/ICD, it is not a diagnosis specific act no matter how much psychiatry tries to enforce this.

  • All mental health workers would have participated in and witnessed commitment and forced treatment in qualifying [including US hero’s], so what we just push away any potential allies who have been helpful to survivors, some of whom write here? You can I won’t.
    FYI some have been physically threatened or smeared by diagnosis on whistle blowing becoming unemployable, and some have refused to participate in some ‘treatment’.
    I’m not saying there are less protections in the US, you haven’t grasped what I’m saying and frankly if your ingrained hatred of our NHS and use of the Daily Mail is your main source of info about the UK I can’t be bothered to discuss anything further with you. Your neo-liberal views of welfare, social responsibility, and the position of survivors in a less fortunate position than yourself I find repugnant, so you’re welcome to reply in pages and criticise anything I say, but I will not be replying any further to you because I find lack of empathy just too chilling.

  • What you describe from the Boston Globe really is evil I wholeheartedly agree, my jaw hit the keyboard reading your words.
    What is happening here is that survivors with an already diagnosed ‘mental illness’ who need benefits and/or other social supports to live or work are being systematically attacked on all fronts because of cuts/punitive policies [supported by all parties] and are the most prejudiced out of all ‘disabled groups’ i.e. physical illness or disability, and learning difficulties. We have a growing list of admissions and suicides where loss of that support has been cited as a major factor [either by coroners, letters left, or family/friends], and landing people in psychiatry at the worst possible end of it.
    I’m currently supporting someone going through her reassessment, these are tough degrading processes and she’s already been in intensive care after a near fatal overdose at the prospect of losing her income, home and support. I’m in no doubt whatsoever that if she has her welfare removed by this near impossible process, she will die.
    The cruel irony is that she was doing ok before this witch hunt took up speed. She has a decent family doctor who supports her wishes, managed to secure funding for a good therapist of her choosing. Her chosen personal assistants help her to live practically [she does have some physical problems too] and she did valued voluntary work.
    I absolutely support her position to live her life as she does and she should be supported, I believe in collective social responsibility, people like her should not be left to go cap in hand to a charity she should be supported by the state and indefinitely if required. That is her ‘recovery’ and no less valid than anyone else’s.

    Forcing diagnosis and drugs on people in exchange for the ability to live is despicable, equally, removing the ability to live of those already so labelled is equally inhuman. Worse when it is done in the name of ‘economics’ when it’s clear that is not the case, it’s driven by an ideology using the language of 1930’s fascism.
    What deeply saddens me is that I observe survivor movements often failing to recognise this and others have too.

    A friend in Eastern Europe said this;

    “I think the survivor movement (especially in the US and Western Europe) actively promotes this myth of recovery by walking away from psychiatry. It is a myth, a blown-up pop star reality, in the sense that it glorifies non-compliance at any cost. Meanwhile it trivialises or refuses to name what is absolutely mandatory for survival: money and housing, social support, physical health care and complete stability in all these things. To the extent that these essentials are available at all, they depend 100% on access to benefits or private resources. That is the reality. Refusing to address this is just unconscionable. It is irresponsible and immoral on so many levels. It gives the movement the feeling of a cult whose charismatic evangelist/entrepreneur leaders relay their heroic and motivating stories of ‘recovering’ through belief in God or Self [Recovery] alone, what bollocks. Reminds of something Clive James said about a socialite about town, “Misia didn’t care about material things as long as she had plenty of them.” I cannot forgive the survivor movement’s silence on these issues. Oppressed individuals rely on social movements to bring our struggles into the public domain, to politicise the personal. To speak up about the denial of human rights [the right to an adequate standard of living, the right to safe political expression]. I think this is true for all liberation movements. If there is silence, then the logical conclusion is that we are so abject that we do not matter…it begins to seem that this must be about sordid personal failure”.

    That’s a strong opinion from someone who has campaigned tirelessly against forced treatment and diagnosis.

    A friend here remarked;

    “Not everyone simply walks away from services and daily medication and that in itself just magics them into a ‘recovery’ including securing a nice job and home. There are also those employed by services as “recovery champions” who do the opposite of crediting walking away from services for their ‘recovery’ – they give credit to services for their ‘recovery’ – their lives and identities depend on doing recovery work for those same services. I see that as ‘dependency’ as well as a great disservice to other users”.

    Obviously any critique of their points I can’t answer for them but felt their views relevant to this discussion to reference.

    Yes, I see your point about advocating, if involved in the survivor movement it is indeed reasonable to expect some critique, and I have seen that, where they don’t ‘promote’ what they do for themselves but do demand proper information and real choice for others.

    Yeah I’m no fan of mainstream drugs neither, I wish I could not take some for physical conditions but I haven’t found alternatives, as for sleep, that’s a work in progress!

    Now that’s interesting what you say about housing because I have a nurse friend working in New York now and she’s worked in our most ‘high secure’ institutions here, that’s where I met her [as a visitor]. She impressed me because these three institutions are the very definition of hell. Staff who spoke out were sometimes directly threatened. Ultimately they burn out, but my point is she’s witnessed the worst we do to people. In her observation of US services as compared to UK services she said what others have said to me that yours are much harder to extricate yourselves from and easier to get into, whereas here despite the level of sections and CTO’s it is easier to fall through the net and escape hospital based sections. Apart from forensic services we don’t typically have the long admissions anymore. It’s possible to be placed on a section 3 [6 month treatment order] and be discharged within days to the crisis team/home treatment and their input is time limited. In fact the running joke amongst service users now is that if you actually want a service it’s so hard to access anything that you practically have to express homicidal feelings. If you presented to services citing suicidal feelings you wouldn’t automatically be offered anything at all, let alone be forcibly treated. This is about cuts to mental health budgets and how they use their definition of ‘recovery’ to suit their agenda.
    My friend in NYC also confirmed what you’re saying about housing being given a higher priority now…here it’s dire on that front because of changes to housing policy and housing benefit so psych services can do little there.

    Love the Dave Allen vid!! I enjoy the Savage Chickens: http://www.savagechickens.com/images/chickenhallucination.jpg

  • When asked ‘do you hear voices?’ I did once say, ‘yes dear yours, you said ‘do you hear voices’.

    I have a very realistic dog bark and have often fantasized about barking in an assessment with an advocate saying, “she says…”. Now who would get sectioned, me for being a dog or the advocate for understanding my dog barking?

  • Hey Donna good to hear from you, I like reading what you have to say because you challenge me in a fiercely intelligent way, you’re straight and direct, it’s always a deeply considered position, and you take the time to seriously consider mine. Whatever we agree or disagree on, I like you.
    I watched a good programme the other day about Emily Wilding Davison with forensic scientists looking at the original footage of her getting killed trying to pin the suffragettes colours to the King’s horse. Many had wondered if it had been suicide because her circumstances were pretty dire by that point, but it’s clear now that it wasn’t, she simply misjudged the distance between herself and the horse and the speed at which it was travelling. When she was in prison she was force fed even after she had thrown herself down stairs in protest and fractured her skull and injured her spine, reckon if we had been alive then we’d have been window smashing with those dinky little ice picks hidden in their skirts.

    I say ‘drugs’ and ‘medications’ interchangeably, some survivors can get upset when I’ve said drugs because they associate that word with street drugs, so I would then say medication just so we could have a conversation.
    Medications do indeed feel a bit of a euphemism given their potential to inflict grievous bodily harm, I take a lot of medications for physical conditions, some of which I’d be dead without, they are real medicines to me. However I do sometimes take some psychoactive drugs when the sleep deprivation is so great that it could place my physical health at risk. There are also some psych drugs which have completely different applications such as for neuropathic pain [Gabapentin, Amitriptyline], I’m painfully aware that some people find those helpful for pain but the side effects can be horrible.
    Ah now ‘side-effects’, there’s a whole other conversation, it could be said that’s a euphemism too because the side-effects with ‘atypical antipsychotics’ ARE the effects!
    I take your point about medications and drugs but for some people they don’t pick up on the difference, and sometimes a bit like other words I will use them if it means I can get a professional or whoever to just listen to me, if language gets in the way of them hearing the message, then I don’t mind tweaking the words but still delivering essentially the same message. So for example, being with someone in a meeting to get whatever they’re on reduced or changed from capsules to [more easily breakable] tablets or liquid to make it easier to them to reduce it and titrate that reduction by smaller amounts. If that professional is only going to hear me as a mate advocating if I say ‘medication’ then I’ll say medication as a means to an end. Basically, if dancing naked and speaking in Klingon gets the desired end result I’ll give it a go!

    You most certainly don’t need to apologise for your contempt of psych drugs, I feel the same rage every time I look at someone suffering from the effects, every time it’s prescribed with no information, misinformation or outright lies.
    I do everything within my gift to offer full information, details of firsthand accounts of using it, the difficulty in getting off it, and the long list of GBH they can inflict through to the permanent damage such as Tardive Dyskinesia/Dystonia which I’ve seen at close quarters and I can offer a realistic enough demonstration of what that looks like, lastly the fatal consequences such as neuroleptic malignant syndrome and agranulocytosis.
    I’ll offer every hand I can in terms of info and support, and keep offering it [trying out different strategies] but I find if I hound it doesn’t work and can even push a person a way, so as with anything there are limits to what we can do. Some people genuinely feel they need them and that it’s been helpful so I won’t push them to make statements about that they don’t feel comfortable with. Like if I take some sleepers/benzo’s to put me to sleep, that works, it puts me to sleep, just as using an inhaler stops an asthma attack. It’s not something I desire or readily do, I’ll only do so as a last resort, but it ‘works’ for me because I sleep. I can’t make others state they know it’s not good for them to take drugs I would never take, nor is it their responsibility to persuade others to not start taking them. We each have to do what feels right in terms of activism and how we explain our personal decisions.

    Like you I won’t judge survivors for whatever decisions they take, and I think we need energy focussed in all different directions – at the consequences for survivors [I think there should be financial compensation for those seriously damaged], at the prescribers in a variety of ways [some might be persuaded to make drugs the last resort and not the first act which is a start], others would need a more robust approach, and the drugs companies [no holds barred]. Equally, some societal consciousness raising, people who have never had contact with psychiatry don’t realise what it’s about but might have to be approached with more conservative language and simpler educational steps [they have much more to catch up on].
    I do like drug company militancy…defacing posters at events, really pisses them off [we should have a Deface team]

    I guess for people who take them day in day out, it must be hard to be against the voluntary use of them when they take them. Being against the forced use of them is a much easier position to support.
    As for diagnoses, as much as most people in my country [by my reckoning] would happily see the end of DSM/ICD/Care Clusters there are those who would not and certain groups especially [personality disorder] would vigorously defend their position [for some accepting the label was the only way they could access help and find acceptance, acceptance of a leper’s colony type of acceptance], you would find debating with them quite tough. So for myself if anyone wants to take drugs and/or accept their diagnosis in the full knowledge that they have no scientific validity, then it has to be their choice.
    ‘Choice’ is not straightforward, and not just about legislation and forced treatment. Then there’s the thorny issue of diagnosis accessing all sorts of supports which people need to live and work. All our systems require a diagnosis, even to access non-medical self-defined support [like a personal assistant], for that to be funded needs a label somewhere along the line. The decent professionals work this out and so negotiate what name to put on the form and it’s a means to an end. Some people here would be scared that they could lose support, as many are already, so my thinking is in our campaigns we need to be saying psych classification systems are shit with no validity, BUT, people’s distress and support needs ARE real, therefore we have to work out practically, socially, politically, how we junk the rubbish but ensure people get the support they need using their own descriptions [for which we might have to develop a shorthand for, for administrative purposes as a ‘formulation’ paragraph will be too long for some systems].

    Thank you for your kind words, you convey warmth and care which for me are two of the most healing gifts we can offer each other.

  • Not off topic at all, highly relevant because mental health is a political issue and as I’ve said before psychiatry doesn’t exist in a vacuum, we can’t ignore the wider political context and how society views disability. As for state intrusion into people’s lives at the moment that is increasing here so clearly it’s a Conservative/Libdem/New Labour nightmare and not a caricatured socialist one.

    As Richard Lewis once said, “I do not believe capitalism is the highest pinnacle of human achievement in social organization. Is this not a legitimate point to be made when discussing where human suffering comes from? And I think examining its shortcomings is intimately connected to our overall struggle against Biological Psychiatry”.

    You can remain focussed on psychiatry’s harm to the exclusion of its wider context, but I prefer to see the bigger picture and address systemic abuse as well because one serves the other.

    Some of us don’t want ‘freedoms’ which equate to nothing more social Darwinism
    http://hiddenmurder.blogspot.co.uk/

  • “Well various sides are always going to disagree on what welfare rules to have”

    Weasel words, disabled people self-funded, researched and produced their own report offering recommendations but government has refused to engage in any meaningful discourse, they even ignore their own advisors offering the smallest of reasonable changes and charities.

    Buy-to-let landlords [including MP’s] DO have several properties which they can let out for extortionate rates to people who have no choice because they don’t earn enough to get a mortgage or have to claim housing benefit because corporations won’t pay living wages so they are subsidised by government having to pay working tax credits and housing benefits so people can afford to live. Housing benefit can fund these properties so yes they are effectively buying them from the public purse. It’s an absolute boom for property for buy-to-let landlords who can charge 3-4 times as much as councils and housing associations [and with less legal redress and protections for tenants]. The wealthy do not pay most of the tax, not proportionately, the poor are being fleeced. MP’s can earn millions in jobs amounting to full time hours outside of their work as an MP with subsidised catering at parliament, where someone like Ian Duncan Smith who claims to be able to live on £53 a week can claim £39 for a single breakfast, all taxpayer funded, along with their 2nd homes. They have salaries, expenses, 2nd homes and earn on top of that whilst telling disabled people they should work for less than the minimum wage because they are worth less. We have a national shortage of affordable housing but rather than build more government cuts at housing benefit

    For someone who didn’t want to discuss the welfare state you’re doing pretty well anon, much of your thinking would welcomed at the Daily Mail

  • pensions [for retired people, including millionaires] are the largest part of the welfare budget, not disability or unemployment, and remember welfare also includes child benefit which people on very good salaries can claim. Even our multimillionaire PM claimed disability benefits for his disabled son and then after he died his policies have seen disability benefits withdrawn or made much harder to hold onto for disabled children and carers.
    Tax evasion rarely results in prison here, ordinary people are chased up for small amounts whilst corporations and the wealthy [including MP’s and peers] can offshore trillions.
    Charities on the whole don’t challenge government that much because many receive government funding. Their ‘care’ would be questioned by many as a lot of them have jumped onto the workfare trough.
    The highest earners and corporations have been given tax breaks, whereas the other end of the population are paying proportionally more. You can pay as much council tax as a low earner as a millionaire.
    British people don’t want your health care system! There’s little desire for insurance schemes here, and your poor don’t fare that well from programme’s I’ve seen here. It’s shameful that relatively rich western countries such as ours have food banks.

  • well I can when those 2nd, 3rd and 4th homes are being paid for with public money and way above the costs of social housing, it’s costing a fortune in housing benefit but what choice is there when there’s a national shortage of affordable social housing and remember most in receipt of housing benefit are in low paid work, subsidising corporations with working tax credits.

    ‘If’ we’re going to have welfare, what would you suggest, we go back to Victorian work houses?

    The situation is so dire here that some people have died within days of being found ‘fit for work’ by Atos, the company your country used to have. One doctor publicly resigned recently and hidden footage documentaries have revealed how bad they are. The withdrawal of some disability benefits which enables people to work being withdrawn or made so difficult to renew mean that some people will have to cease working, how can that make sense?

    We’ve had suicides here and admissions to hospital because of welfare policies making it really hard for people to live [both in and out of work].

    Sick/distressed/disabled/unemployed people don’t have a problem with proper assessment, rules and conditions, but that’s not what we have right now, it’s a mess and a mess which is costing lives.

  • There are better instructive sources of life in the UK than the Express and Daily Mail..I listened to a group of American tourists the other week speak of the Philpot case as though that was indicative of everyone in receipt of any state benefit, and psychiatry isn’t responsible for all the problems relating to welfare.
    Everyone pays into the system, so in the UK unless you are exceedingly wealthy or have a crystal ball and know you won’t ever get sick/distressed/disabled/made redundant, then fair enough to object paying in.

    “It would have been better to have society develop private charities funded by people who actually care and who believe in the task at hand so much they voluntarily donate”.

    I think you’ll find there are more people who do care and wouldn’t want to see their fellow humans have to rely on private charities.

  • Yes there is a forced redistribution of wealth from the poor to the rich, with private companies making money out of poverty and reformed welfare systems not saving money revealing it’s true motivation to be ideological not one based on economics. Thatcher’s years saw a big rise in Incapacity Benefit as people were put on Incapacity to lower the unemployment stats. Blair/Brown introduced Atos, Cameron is merely dismantling the welfare state and the NHS, the Tory dream. The Daily Heil is highly influential as are all the UK media which has been responsible for putting out skewed stats which have been shown to be deliberately skewed. Yes policy is costing everyone more – the failure to build more social housing and control private rents combined with caps on housing mean people end up being moved across the country, sometimes away from their low paid job on tax credits which subsidise corporations refusing to pay living wages. We are spending unnecessary billions to private companies doing assessments proven to be so flawed that most people win their tribunal [again costing millions], even the food banks make money for party donors. Then the ‘Work Programme’, what a joke that is, again making lots of money for private companies and shown to be no better than doing nothing, but we still shell out that money despite it’s utter failure. We pay unemployment benefits to people who are blamed for their circumstances chasing jobs with zero hours, being forced into ‘Workfare’ where the company gets paid for taking them, so the tax payer pays twice over and for what? Forced labour or lose your income of £71 a week and this isn’t slavery? There are going to [rightfully] be more cases going to the High Court, it’s a farce. Workfare is also handy to bring down the unemployment stats

  • that’s pretty revealing of anon and corporate get outs and bank bailouts and state benefits [many of which are taxed] are not the same thing. There has been outright vilification, I have witnessed it from critical thinking allies and survivors in the name of recovery. Government has led an active hate campaign which has resulted in a rise of disability hate crime, and some of this divide & rule [which is more pertinent now] is being reflected in mental health activism.
    Getting off disability benefits is indeed a good conversation to have, unfortunately – no one’s having it and policies actively conspire against facilitating it but as you say you don’t want to get into a conversation about the welfare state.

  • you raise some interesting points David and whilst reading I started to think of a friend for whom mutual friends all know that when he is in crisis that he will end up sectioned regardless of whether we get to him asap and stay with him. Some of us have walked all night with him, listened, made tea etc, but what he does appear to want is some sort of ‘holding’ even though that comes with extra medication [he chooses to take some on an ongoing basis], and can also mean a high degree of humiliation and violence by the police and seclusion in the past. Police involvement occurs because of things like directing the traffic as opposed to presenting any risk to others [he wouldn’t hurt a fly], and he himself has said afterwards that he knows the point at which if things continue that it means he will end up on a section.I’m not 100% certain that if there was a non-medical facility he could check into it when he wants to be away from home and cared for. I’d truly like to think he would because on the surface of it, wouldn’t most people prefer that, I would. Some of us have wondered whether pride is an issue for him, needing to be looked for a while but that being excruciatingly hard to state and ask for, or that anything less than forced ‘care’ would be at odds for him as an activist. There is a palpable struggle here, much is not voiced, and it’s really hard when he asks directly or indirectly for his friends to call the crisis team because his expression of distress [labelled as mania] easily gets an admission. Some people have even asked him, ok, if we can’t assist you to keep out of hospital can we help you to seek a voluntary admission instead of being sectioned, but that point at which he knows it’s the ‘point of no return’ always passes. So sometimes the only damage limitation can be if anyone around can get involved in how he is sectioned i.e. advocacy, practical stuff. It’s painful but clearly friends are not able to give him what he needs which is not to suggest that being detained does but somewhere along the line it’s become his only way of saying ‘help’.
    For myself, when I’ve been in a position of needing surgery for an injury I know when I’m forced to see a psych what to say so that I’m not seen as a suitable case for psych treatment, I’ve learnt how not to get caught. After a few times of being carted off in a state labelled as ‘catatonic’ I learnt that when differences in perception were going along a track where I might ‘freeze’ then I could not be on the streets otherwise like my friends direction of traffic it would mean ending up in hospital which is not what I want.
    You’re right to flag up the unconscious, absolute truths and subjective judgement David, our relationships with ourselves is the most fundamental we’ll ever have.

  • sorry, PD is the abbreviation here for ‘personality disorder’, and speaking of language ‘hand outs’ is a not a term I would use because it has a negative tone. Most people in receipt of housing benefit and working tax credits are are in low paid work, and are currently being subject to punitive treatment in the UK, along with unemployed people and anyone who’s sick, disabled, distressed.
    I disagree, there is increasing judgement of people who take meds/’use’ services/or receive any state support to not do so from critics of psychiatry in the name of recovery. There are clear examples of outright vilification, and survivor groups often won’t argue against diagnosis while still asserting people’s real need for help and support, and do hold it against them as personal failure. Psychiatry is a barrier I agree, but it’s not the only barrier, we live in societies which only value economic productivity so when people can’t for whatever reason live up to that they are viewed as less than human [there’s increasing evidence of that] and that also helps to deliver people to psychiatry. We have inflexible systems which don’t allow people to live in the best way for them. That’s hope destroying too.

  • Lol David, that’s one word for me, but I reckon others might find another.. but yes I am mostly consistent in that respect.
    I’m not aware of how harm reduction is used in the US, here it developed from survivors and some professionals have supported it. Bit like any approach, from recovery to CBT there are crap ways of using it and respectful empowering ways of using it. At the best, it can mean the difference between a hand or arm which works and one which doesn’t, it can mean the difference between life and death. It can enable a person to take better care, maybe delay, look at additional coping strategies, develop some ‘bottom lines’ regarding medical treatment.
    It’s a deeply humbling area.

  • Duane, some of us would say attempting to eliminate psychiatric diagnosis and forced treatment by itself without considering the wider societal context without seeing how political structures [not party politics] support psychiatric power and hand deliver patients to their doorstep is flawed. You’re less likely to hear from those who have found physical treatments, forced treatment, detainment without forced treatment helpful because they wouldn’t come here.
    What I’ve found is that even within extreme difference there can be points of contact and joint working on specific issues, and at the very least meeting people with different views helps us all in developing how we think and how we put our arguments forward, it’s never a loss. Just as sometimes the people we view as our enemies can sometimes produce a paper which works to our advantage.
    I don’t regret having contact with medically minded survivors [a Schizophrenia org] who you would find utterly alien to you [me too]. There are also groups out there who would contest everything you say and with the backing of their professional guru’s and they are really tough [the PD orgs].
    I don’t regret being effectively stalked in my youth by a relative org’s member jumping up and accusing me of telling people to come off their medication at events I spoke at, because someone else took the time to get to know me and although we had different positions the things we agreed on we worked on. Nor do I regret being publicly goaded and vilified by very medical psychiatrists, what I took from that was when I organised my first event I made darn sure everyone [survivors and professionals] got to finish their presentations, and I wouldn’t allow discussion to disintegrate into personal nastiness and sarcastic gloating, debate had to be about the content of what people said.
    I’ve learnt a lot through difference, although I remain sad at what happens with recovery, the personal denigration you can receive if you don’t say yep that’s my thing and hit the measures of it held up, it’s not as though I’m going to diss anyone’s proclamation of being recovered for themselves, and me saying nope I don’t identify with being ‘recovered’ is of no threat to recovery work.
    I appreciate you having the conversation with me Duane, I truly do.

  • I appreciate yours too David, I guess that’s what I’m putting to MiA; the challenges, contradictions, the uncomfortable, the shades of grey, the non-absolutist positions, the pragmatic, the possibility of compromises we may not like as an end point but as a stepping stone. I’m putting out views and questions and don’t feel certain of the answers.
    For me fighting for freedom will mean different things to different people and if freedom is to mean anything surely it has to include what we might not choose for ourselves?
    Imagine a world where we could each have an advance directive where our specific wishes were followed to the letter.
    I recognise UK psychiatry is easier to escape than US psychiatry, every UK mental health professional I know who’s worked in the US have stated this. Most people who end up sectioned here [excluding those on CTO’s and in medium/high secure care] can get out quickly now because of cuts to services, sometimes within days. This doesn’t make it right or better my point is for some people they have greater fears than being sectioned right now.

  • I’ve done work on harm-minimisation for self-harm, that is offering information to survivors on how to self-harm more safely to help minimise the risks of limb function damage and life threatening damage. HM isn’t solely about plain English anatomy & physiology, ‘safer’ ways of injuring, wound care, minimising infection/scarring, that’s the practical thrust of it, it’s about recognising that people can need to do something and sometimes not want to at the same time, to take some control over the process. HM is also about being prepared for surgical repair or medical treatment i.e. advocacy, prepared letter for staff from any professional supporter stating what helps/doesn’t help, specific treatment preferences [including the desire to not be psychiatrically assessed]. It can give professional supporters a more positive role and is more helpful than prohibition via “contracts”, refusal of support or forced treatment.
    This can be highly contentious with both survivors and professionals, I take the view that if it’s helpful it should be available, and if it became illegal, then I’d have to be a black market operator!

  • Yes David, some people have found those things helpful, many more people of course have not. All truths are valued differently, I see that in the UK, and I seem to remember one other poster saying somewhere how we were in danger of a 2 tier system – those who take meds and those who don’t. I’ve seen a widening gap which also includes [alongside medication], those who go to services by choice and those who don’t, those who take state support and those who don’t, those in paid employment and those in voluntary work.
    We could just accept the diversity of people’s truths and whatever they need to do in order to survive

  • I apologise my incorrect assumption – would you also be aware that members of the CPN may have also halted treatment imposed by others [meaning the person could choose to die]?
    I’m not totally against the idea of very short term and judicious use of a section with no forced treatment for people at extreme risk, it has sometimes been helpful by putting a pause into the person’s circumstances [that’s not me painting my interpretation that’s feedback from survivors]. That doesn’t mean I think it should be routinely used, nor that I think suicide should be prohibited, nor that psychiatrists should make the decision, but it is something I could agree to being explored.
    Psychiatry isn’t going to be stripped of its legal powers that easily in our “democracies”, it’s those very political systems which want them, we may have to consider a watering down of them initially which is better than nothing.

    Maybe the CPN will issue a statement, and maybe we might both be surprised by their position.

    We have to be pragmatic and work with what we’ve got, sometimes good projects have been funded with tainted money, if we only accept
    “private benefactors who believe in freedom of choice and are critical of the medical model” – how many of those are out there?

    Er advocates can help people get out of hospital, argue for what they need, help with housing, benefits, GP’s, how is that negative?

  • Yes Steve ‘recovery’ has evolved differently in the UK and I would not support much of how it’s become branded and practised within services and I’d equally be critical of NGO’s, free lance trainers and survivors who can also be prescriptive about it – and that’s without a diagnosis!
    I hope we meet one day to.

  • I know the difference between those detained under law and those seeking assistance being coerced without the full weight of legislation, but that doesn’t make the latter any less painful for people, I don’t wish to judge what is positive or negative freedom, that’s for each person to define for themselves.
    I wasn’t suggesting you police others language [some do so here] and you have every right to register your complaint at any description, but language isn’t always used to deliberately mask reality and defend coercive practise, it can simply have a practical application without full consideration of its meaning within the context of potential forced treatment. I don’t do committees personally but how many funders are going to come out with statements about what psychiatry does?
    I take your point about convincing the public of the reality of services but ‘service user’ is one of many problems on that front, and possibly not the greatest.
    I won’t cut off my nose to spite my face, I can think of a survivor-led service funded by health which operates on survivor wishes not health service wishes, it’s highly valued, how many funders out there can you go to which are fully untainted? In saying this I wouldn’t even attempt to deny that some funding comes with unacceptable conditions but it’s a judgement call for groups to decide where they draw the line. Drug company funding is pretty much universally viewed as totally unacceptable to take.
    Advocates [whoever pays their salary] on the whole do a good job of defending people’s rights and supporting their wishes. The roles which really have been thoroughly corrupted by funders are ‘recovery’ jobs, where they are expected to dance to the service tune, I wouldn’t touch those with a barge pole.
    We can agree to differ on where we draw the line, what language we use, in what context and why but we do know that anyone under section, and anyone under threat of withdrawal of all support if not compliant with nothing else to access are not willing ‘service users’, it’s for each person to decide what is and isn’t degrading language to them.

    For your information regarding CPN professionals, not all are practising psychiatrists and you’re not aware that some have used the Mental Health Act without forced treatment, I know this for a fact, and it’s possible that some might not detain at all now [we could ask them]. Fact is CPN are allies, and like us, they might not always get it right in how they express themselves but they are fighting for some of what you fight for. There are some ’recovery orientated’ psychiatrists and survivor recovery promoters I would run a mile from, they use all the right language but using the right language doesn’t automatically mean offering what you want. Equally I’ve come across professionals who speak in very medical terms but in terms of their practise have been more creative and innovative than some of their better spoken colleagues. Sometimes language clouds where people are truly at in what they do.

  • Lol, we speak English but at times a different language my friend, our use of language and cultures are quite different but not always what they might appear to be.
    One of our early activists of the 60’s [Eric Urwin, Campaign Against Psychiatric Oppression] said “People are as much consumers of psychiatry as woodlice are of Rentokill”.
    Now ‘consumer’ is a description which has been widely used in the US, Canada and Australia and you could levy the same criticism of that as ‘service user’.
    The term ‘survivor’ was introduced to the Canadian’s by the British.
    ‘Service user’ is used out of ease within research, involvement with service development/operation, and high level committees because that’s what policy makers, service commissioners and funder’s understand, but that doesn’t mean the people involved are automatically tame loonies. It can be a description on paper only.
    Survivors [and some professionals, and our allies] will often only refer to service users to get a foot in the door, get something read, listened to, but how they refer to themselves and others whilst doing whatever they’re doing is another thing entirely.
    I’ve worked with professionals on some [non-drug] research and we might refer to loonies [a word some of us reclaim] but for the paperwork the funder’s are not going to accept loony/survivor/mad person/voice hearer etc. So do we do nothing because of the term?
    If I had the chance to get money from the NHS for an advocacy service I’d happily refer to ‘service users’ as part of the funding bid as a means to an end.
    We can get hung up on language to the point where we can end up telling each other how we may and may not refer to ourselves and our experiences. I support self-definition, so I don’t care how anyone wants to define themselves when it’s of their own choosing.
    I remember in the 80’s when the survivor branch of the NSF [National Schizophrenia Fellowship] which some of us nicknamed ‘National Schizophrenia Front’ [a play on the racist/fascist BNP, NF], would refer to themselves as ‘sufferers’, many of us would cringe.
    Equally I cringe now at some of the airy fairy recovery language about being ‘beyond recovery’, means nothing to me, but I’d fight for the right for anyone to describe themselves however they so choose. I personally favour survivor, psychiatric survivor, loony, mad, but I’d use service user to get an article into a journal read by professionals promoting a survivor defined approach they wouldn’t otherwise hear about if that means they will read it.

    We have to let people use their own descriptions and allow descriptions to be used [when it isn’t their preference] if that helps them to progress some of our aims.

    Terms are also used interchangeably. If you want to question what we use then you could also question the hearing voices movement for its use of ‘psychosis’, that’s a medical model description, but sometimes that word has to be used in order to reach the people we need to reach, it doesn’t mean that using the word is promoting a medical model. Psychosis is routinely referred to by activists even in circumstances when it isn’t ‘required’. We can police language if you like, but how helpful is it.

    ‘Service user’ when it comes to actual service provision is contentious to many, because of course you’re quite right anyone sectioned, in medium/high secure ‘care’, on a CTO is hardly a willing participant. However, neither are those of voluntary status who are told attend this group or do X and if you don’t you will be discharged/all support withdrawn, it’s not only physical treatments which can be directly and indirectly forced. You might think well if the person has a voluntary status they can walk away, why does that have any hold over them – well it does when people have nothing else, as uncomfortable as that may be to many of you.
    In physical health care we are called ‘patients’, in mental health services [formerly psychiatric services] we are called ‘service users’ and nope many of us don’t like that at all, but all our healthcare systems have set descriptions for us. What are you called in the US in your psych services, ‘patients’? Do you feel like a patient?
    Our services most certainly hide behind the reality of what they do with euphemisms, they hide behind all sorts of terms, as do yours I’m sure.

    There are many differences between the UK and US, I know that your psych services are much harder to extricate yourselves from than here for example. Sometimes people really do take something useful from services from an exceptional individual, that must occasionally have happened in the US, I’m certain anyone who saw Peter Breggin as a patient would have benefited. There are of course many many more of those profoundly damaged by psychiatry both physically and emotionally, and the iatrogenic trauma for some has become enduring, but there are others who despite having found nothing useful within services and ‘treatments’ found something else in themselves, found other survivors, found a purpose, solidarity and desire to fight one of the last civil rights struggle they may not have considered otherwise and don’t always regret that fact.

    As for politics and political systems, your country is no better than ours, but let’s not get precious about who’s more radical on the language front because it’s our actions which really count.

  • There will always be a need for paid and unpaid supporters [be they professional or non professional] because even the best friends in the world have work, kids, maybe a lack of space to accommodate someone in crisis. Even when people love us dearly that doesn’t mean they can automatically relate to us on all issues. I don’t talk to my parents about my voices because that’s not something they can relate to, not because they don’t care, everyone has their strengths and limitations.
    I can think of one friend who has the space to accommodate someone for weeks, even months [and has done so] but how many of us have that as an option? Sometimes we do need to speak with someone outside our friends and family, sometimes we do need to be physically somewhere else but there’s no non-psychiatric crisis/respite facility.

  • I disagree Steve, the expectation now is take your meds, be compliant, AND recover! You are expected to recover. Government also expects you to recover i.e. out of services asap and in work.
    Drugs are not the only treatments which are forced here, people are also being forced into PD groups for up to 2-3 years or else they are discharged from the CMHT, and these can be people who were diagnosed as Schizophrenic, on depots, who accept their diagnosis/meds and you would never see them here, but services have no long term support for people anymore, so they get shoved into this.
    Equally, there are brands of recovery outside of psychiatry which are as unhelpful as what services do but in reverse i.e. you’re not allowed to experience enduring difficulties, you’re not truly recovering unless you don’t take meds/use services/are in paid employment and anything less is personal failure. Because recovery as a concept can be wrapped around literally any ideology that’s why some of us have turned away from it because we’ve not yet seen what it purports – being allowed to live as well as you can in the way you need with no prescribed descriptions of what it looks like.

  • The ‘recovery approach’ within services is a sham, it’s all wrapped around a medical model in the ‘recovery colleges’ where you learn about your illness, take the meds and/or CBT and the ‘alternatives’ are – talking to people, but not within services, and a bit of Bud-Lite mindfulness. People are pushed through a few weeks in a recovery group or college and that’s it their done. Some peer support workers have been required to do far from peer support, but what managers want, but when it’s done in a paid capacity and the rent depends on it, it’s hard to dissent.

  • There are survivors who don’t receive state support who choose to use services, take medication and are comfortable with their diagnosis. They are not brainwashed, suffering from Stockholm syndrome, and have high intelligence, it really is a choice for them, and some are activists who fight against forced treatment.
    I’ve known people who use cannabis to help with medication side effects and also to manage differences in perception and this has been after diagnosis.

  • I appreciate your words too Sean because we must have the difficult and uncomfortable conversations exploring the contradictions, respecting differences and different kinds of activism otherwise fighting for freedom becomes meaningless if it’s only the freedoms we agree with. There isn’t always a clear unambivalent line on issues. We live in a complex, contradictory, confusing world and in trying to look at those contradictions I can find myself attacked from all sides. When I raise one of the most fundamental contradictions regarding the issue of people needing to have their diagnosis used in order to live i.e. access state support [whilst simultaneously wanting to see the fall of DSM] many survivor leaders don’t want to look at it because it’s an embarrassment and doesn’t fit models of ‘recovery’, radical activism, freedom from psychiatry, but it’s a real life problem which isn’t easily resolved. In my country at the time of DSM/ICD/Care Clusters being questioned [rightfully so], the irony is that for some people the only thing standing between living and destitution because of several policies are mental health services. It’s the most horrible contradiction and the decent workers in the system understand this and are trying to help their service users as best they can, and it doesn’t help to attack those caught in this position.
    Sometimes working within the system makes the difference for some between surviving it or not, like advocacy.
    Like you I seek people’s own truths and wish to support however a person survives, even if I don’t like it. Horizontal oppression, that’s a really good term, we see that happening in the UK too, and sometimes it can reach cannibalistic proportions,and all that happens is that it divides us and creates great big gaps for our enemies to seize. I’ve seen survivors very hurt as you suggest in your words, sometimes even more than what services did to them, yes, we should know better.
    We each have to do whatever feels right and going into hospitals and battling it within doesn’t stop anyone from battling it outside in different ways, we can have a broad umbrella.

  • I have no fear in stating my position meremortal and know full well which of my views are likely to be caricatured, reviled, or dismissed – doesn’t stop me from saying it. I don’t solely define myself as ‘anti psychiatry’ because for me that word does not adequately convey my thoughts regarding psychiatry, and that has nothing to do with fearing what others think of me. I don’t identify with Szasz and Scientology, but I do think Laing had a few things to say which I’d support, but my decision on how to define myself is not predicated on what that might be associated with. If I wanted to define myself solely as anti psychiatry then I would do so.
    Every model has its flaws, not only psychiatry, difference is it’s backed by legislation and it’s all mental health services offer so it’s not a choice.

  • I like this Corinna, and Aja is great. This is a play on mad words:

    Barking….
    MAD!!

    Nut case
    Head case
    Fruit case
    Any case

    Cuckoo
    Crackers
    Crackpot
    Winolot

    Barmy
    Batty
    Bonkers
    Banana’s
    Out to lunch

    Round the bend
    Round the twist
    Doolally
    Off me trolley

    Loopy
    Loony
    La-La
    Lost me marbles

    Raving
    Wacko
    Unhinged
    In the bin

    Barking…
    MAD!!

  • I support your wishes Paris

    I am anti behavioural therapies when they are used to modify people’s behaviour through coercion, reward & punishment, implied ‘faulty’ cognitions and people are told this is the only psychological therapy available to them. I am anti psychology when it uses similar diagnostic codes and assumptions as psychiatry. I am anti therapy when it head fucks people denying experience as an intellectual exercise and refuses to accept different belief systems. I am anti psychiatry when it forces physical treatments. I am anti recovery when it prescribes what that is in no less prescriptive terms than psychiatric diagnoses. I am anti divide & rule being reflected in survivor movements. I am anti governments using psychiatry to further their social policies. I am anti capitalism which helps to deliver many people to psychiatry’s doorstep. I am anti corporations and the powerful making money out of people’s misery alongside psychiatry.
    Describing myself purely as ‘anti-psychiatry’ wouldn’t really encompass my position.

  • British protest against DSM coming up:

    http://speakoutagainstpsychiatry.org/dsm-5-protest-4th-tuesday-june-4-30pm-onwards-at-the-institute-of-psychiatry/

    I wish nurses also got more involved with these debates. You’re quite right that this issue has been presented in UK mainstream media as professional rivalry which it is not. Also, the way it is discussed in new media is not the same as here. That presentation does the people who strived so hard to get to this point a great disservice. Suggestions of CPN getting out in the mainstream is a good idea to help counter this.

    I’ll reiterate something I said on the HV thread, The fact is people increasingly need medics (as in the recent court ruling) as allies to back claims for ongoing support and assistance,so how do we square that in the here and now with politicians who happily withdraw anything if they can get away with it?
    Decent professionals are well aware that diagnosis is complete nonsense but are equally well aware that they need to use it – this has always been the case – but it’s becoming even more necessary, something which needs acknowledgement of in DSM/ICD debates. It’s an uncomfortable reality but these issues need to be faced. There’s already too much division and judgement around who takes meds/uses services/is employed/accepts a diagnosis and why, etc. Many of the people in this position will not be posting here, they’re not even going outside their front door.

  • The fact is people increasingly need medics (as in the recent court ruling) as allies to back claims for ongoing support and assistance,no matter what anyone thinks of that, judge it however you wish.
    Some people use Direct Payments to employ support workers of their choosing, to work by non-medical methods, but acquiring that income requires a medical definition, so how do we square that in the here and now with politicians who would happily withdraw anything if they could get away with it? The only reason they don’t is because they would want to retain the Mental Health Act for those who come into contact with medium/high secure services and criminal justice system. Decent professionals are well aware that diagnosis is complete nonsense but are equally well aware that they need to use it – this has always been the case – but it’s becoming even more necessary, something which needs acknowledgement of in DSM/ICD debates. I say this recognising US psychiatric system is not the same as the UK. Also the fact that not every service user would want to have alternative descriptions, we can’t ignore them just because we don’t agree [we work with psychiatrists after all!]. I’m thinking of the PD orgs, they really are the worst case of Stockholm syndrome you’ll ever encounter and they will be on the other side of this debate and you have to understand why that’s happened for them, I think I’ve grasped why this is for some of them.It’s an uncomfortable contradiction but these issues need to be faced. There’s already too much emerging division and judgement around who takes meds/uses services/is employed/accepts a diagnosis and why, etc.

  • This made me smile, especially the bit about getting a priest because I once asked that and got one! I’m not religious [at all] but at that moment I needed to talk about spirits and their souls and I knew the bloke in a dress and dog collar would listen wher the nurses wouldn’t, and he did.
    http://speakoutagainstpsychiatry.org/how-to-escape-from-a-psychiatric-hospital/

    My tip for escaping: when you’ve got leave ‘with a friend’ do it once or twice going for a walk with someone known to staff, then get someone in who isn’t known with someone else waiting outside in a car then drive off somewhere to stay. This means known friend maintains credibility [if needed]and unknown friend can’t be traced.

  • ps your comment about ‘Pandora’s Box’ struck a cord with me as I remember many years ago a psychiatrist telling me that he didn’t like to discuss issues of childhood abuse because he didn’t want to open ‘Pandora’s Box’, and I said to him if you don’t open those boxes you are doing your patients a grave injustice, you are colluding with their abusers by maintaining the silence. Although I’m guessing people like him also didn’t possess the skills to have those conversations, psychiatric training isn’t good on those issues

  • The only point I’d take issue with you on Jacqui is “I “must accept my diagnosis and take medication” and then they would give me welfare benefits and a free bus pass”, that’s often something people do not easily acquire and not a helpful statement in the current UK climate given what a judge recently said: http://www.guardian.co.uk/society/2013/may/22/fitness-work-tests-mental-health-unfair
    what research is revealing:
    http://www.guardian.co.uk/commentisfree/2013/may/11/benefits-claimants-other-research
    and how in addition housing issues are directly impacting on victims of abuse:
    http://www.guardian.co.uk/society/2013/may/23/benefits-cap-catastrophic-effect-families
    A number of judicial reviews have been heard and are being sought including demands for the minster to answer for his persistent lies on statistics, so I would ask that you consider very carefully what you say on those issues given these issues are pressing very hard on some people and few survivor groups are speaking out about it, it’s the physical disability groups who have been most active. Bus passes are being taken away on grounds of “mental illness”, and welfare assessments have been shown to be prejudiced against people defined as “mentally ill”, and the ‘Work Programme’ offers no specialist support to people who have survived psychiatry

  • Nice piece Sean which I appreciated as a British loony because our movement has been one of bridge building and it’s hard work beating that path for the first time in a hostile environment. I remember starting a Patients Council in a hospital where a nurse aggressively shouted at the inpatients “you don’t want these people here do you?”, and attending some of the first service planning meetings where the suggestion of drug information leaflets were viewed as ‘subversive’, likewise speaking at conferences being effectively ‘stalked’ for the day by a psychiatrist telling me I was far too stupid to be able to read a research paper, interrupting every single sentence in a workshop. It was really hard keeping my cool, not taking the bait [they wanted us to lose it]. I refused to give them what they wanted, and cried over tea with a friend afterwards waiting for me at the station. Treading this ground within the system takes courage, and sometimes it hurts those of us who did this who can be viewed as irrelevant by others when they didn’t have to walk such a tough path because we helped lay some of the foundations for our peers after us.
    Earning respect the hard way is not for anyone to diss as survivor movements require people to do all kinds of actions – working from within the system, putting a foot in the door as an advocate which isn’t about persuading professionals to look at distress in other ways and offering a hand & hope to our peers, collaboration where that’s viable, separatist work, developing alternatives to psychiatry, survivor defined approaches, and not leaving behind anyone who doesn’t cut it as “recovered”.
    It’s not a case of only doing A or B, there’s room for everything to be done with people doing what suits them best.
    The reality is political systems will not allow psychiatry to just die overnight, and not all survivors will even handle not having a label, or need one for social supports, so those of us who can work with this will need to, can’t just ignore it, just as psychiatry doesn’t operate within a vacuum, it’s pointless addressing psychiatry without addressing many of the social and environmental problems which lead many people to psychiatry in the first place.
    Yes we do have to alter how we speak to professionals [rational, not visibly too emotional], because that can be very effective. I used to speak to medical students after they’d just had their psych placements, engage them in a shared humorous cultural topic and then sock it to them with my own deeply painful experiences speaking in a lowered calm steady voice looking right at them. It DOES have impact, when we convey what it’s like to be tortured, what those experiences meant to, the consequences of it followed by how simple it would be for them to respond differently to be helpful.
    Equally, we need to address how we can diss each other with notions of ‘recovery’ with its sticking points around who uses meds/services/takes welfare on a diagnosis/is employed.
    My early experiences taught me valuable lessons, so when I organised my first conference I did not allow participants to just attack someone because of what they believed them to represent because I knew how that felt, so everyone got to finish what they came to say, and then delegates could question and argue, on the basis of the content of what they said. I remember when two of us resigned from a high level committee because it was impossible on that occasion [sometimes we have to recognise when we are bashing our heads against a brick wall] but in resigning in the way we did we achieved much more than if we had remained.
    I agree with Sera about caricatures because a couple of people I mentored are professionals I’m proud to know, I was pushing on an open door anyhow, but their work makes life more bearable for anyone whose paths cross with them – and they pay a price for it. They’re not equal to survivors no, but equally not all survivors would automatically represent my position on a few topics neither. Hearing about ‘recovery’ did nothing for me, seeing others who had endured but survived for many years was a more helpful reflection for me as someone who cannot identify with ‘recovery/being in-recovery’. We should be concerned about the way ‘recovery’ has been utterly bastardised by psychiatry with their ‘recovery colleges’ and ‘champions’ and this is where survivors really are duped into taking paid roles which are like tinsel on the Christmas tree, now this is where I wish survivors would say ‘no thanks’, I understand why those jobs look better than shelf stacking, but they are being used to further the aims of service managers.

  • For something lighter Jan do check out my Fergeson’s Safety smock piece on ‘Difference..’ I didn’t like to post it here because I didn’t want to be disrespectful to the subject, but it’s a humorous piece ridiculing psychiatry’s utterly prosperous responses to people in suicidal distress

  • Yes Jen you have a point, language can get in the way, and perhaps the useful aspects of CBT are better when sought for oneself without a therapist in the equation!
    I accept how you used it, no problem with that, but I’m thinking of people who really have lost everything, or people whose circumstance and distress were far lesser than yours, we all vary in how we cope and in our resilience.

    You’re a gentle soul Jen, and I like that Buddhist quote but as Richard has ably just spoken of in the CBT blog we can’t ignore the material world and need to be biological psychiatry’s worst nightmare within it, because much of people’s distress, including distress which proves fatal is also rooted within the inherent damage all our political systems [not parties] do. That doesn’t remove all trauma but it changes a lot

  • A fellow UK survivors observation;

    “I think that survivor support (survivor solidarity) is something we work with on a small scale rather than something the whole “movement” is going to adopt. Szasz’s type freedom crusade grew out of a different soil than the solidarity of people who have suffered and seek to understand one another. But for some survivors, Szasz’s perspective gives an orientation and meaning to their activities together – that is, they use it to support a solidarity i.e. “This is what we are about”. I think it gives some people a belief in autonomy and mutual respect for others (which is good) – but it then gets caught on the problems of real life and real distress where those who do not fit the model become those outside the fence”.

    Life is complex and messy and I try to find humanity and maintain humanity in amongst the painful mess.
    I can feel outside the fence when I see the line of sink or swim, how stupid is anyone to choose to take drugs [that’s sometimes a choice no matter how much we might not like it],use services, be in receipt of any welfare support which means using the given diagnosis [iatrogenic damage suddenly loses its validity], too linear.

    I can’t take a people die so tough shit line. I’m enraged by clearly preventable suicides where choice is not truly a choice, such as punitive welfare sanctions [for those in and out of work].
    Otherwise I respect anyone’s right to die but would obviously want to see society and anyone paid to support react quite differently to anyone suicidal coming to their attention i.e. no forced drugged incarceration, and access to non-medical sanctuary.

    In saying this, if a friend wanted to be hospitalised I’m going to help them [it does happen], just as if they wanted to escape I’d help them [I’d be happy to break any law].

    I’m not against suicide per se, I support assisted suicide [Dignitas] and feel they should see people for psychic/mental pain as well as physical [they currently don’t, few people would support me on this], because I’ve seen how grim failed suicide can be when it means living and body altering disabilities. If someone really needs to do it, then I don’t want them to suffer.

    I don’t want to see anyone degraded and imprisoned for being suicidal but I have seen a couple of people detained without any treatment forced to put a ‘pause’ into what was happening for them. I know this is rare, I’m just reporting it, to throw an idea for consideration, maybe as a stepping stone to forced treatment/sectioning/commitment laws being dropped.
    You may have to consider the shade of grey because the world may not shift to a Szazsian dream just like that.
    If you had the chance to secure something nearer to where you want to be rather than nothing would you take it? I would.

  • “I also want to acknowledge the inherent challenges in knowing when choice is truly choice”.

    Thank you, that’s all at the heart of it I was arguing for, regarding the preventable deaths, where people’s circumstances have been toppled by systems and policies leaving them in unnecessary dire positions. The plight of low paid part-time workers reliant on tax credits which are now threatened is an example of where choice is limited – unable to secure or do more work but being sanctioned regardless. It’s not ‘catastrophising’, the choices really have been curtailed for them.
    ssenrch on the CBT blog writes really well on the issue of catastrophising, I’d recommend taking a look.

  • “…it is very possible to be “traumatized” but in a more global way by our sick culture(s). And that needs to be recognized more.”

    “I don’t really like to think that the core of my identity rests in my relationship to psychiatry”.

    Yes and yes.

    I remember many years ago two of us going into a workshop with all our labels/descriptions written on card hanging around our necks and we went around the room with a box filled with sticky labels with psych diagnoses on them which they had to slap on each other and then describe without saying what it was and guess each others label. We also put in a few other words such as ‘football supporter’, ‘politician’, etc just to muddy the waters.
    Then we offered our alternative descriptions of ourselves, so alongside voice hearer, I also had star trek geek prone to stropping around as a Borg, highly competent barker [I have a very realistic dog bark], etc you get the picture. It was a nice contrast to ‘incurable’ [I was once called that, is anyone else a member of the incurable club?!].

  • “It is awesome that MIA exists and it definitely counts as one of the most fascinating and intriguing communities I have ever encountered on the internet”.

    agreed!

    Faith, it is sometimes hard for some things to ‘translate’ on the net, in terms of communication, we can’t see each others faces, hear tone of voice, communication isn’t only about the content of what we say. The net is a wonderful thing but it also has it’s limitations [like anything] because it can get very heated in a way it might be different face to face.

  • I’d like to quote a dear friend,a survivor who trained in psychology who read this blog;

    “I really enjoyed reading the debate about CBT, it made me think a lot about positioning theory and why people get stuck in absolute positions which prevent acknowledgement of difference. I like your point about cognitivism privileging thinking over the meaning of emotions. Academia and therapies justifying themselves within scientific discourses has meant a complete blindness to the art and power of humanity. The philosophy of therapy is often not attended to, nor it’s political origins. CBT still depends on the ideas of Descartes even though the traditional sciences having moved away from this decades ago! I think all therapists should not be allowed to train without understanding the tenets of their practice and the philosophy of ethics”

  • “I still feel you are over the line in terms of determining for someone else which sadness is “realistic” or acceptable in your view and which or how much is unnecessary, “irrational,” excessive, “distorted,” in your opinion. Life conditions vary so broadly..”

    A great piece of writing and one which I’ll reference, ssenrch please writing for publication

  • Note – Google “contradiction” A person, thing, or situation in which inconsistent elements are present.

    Life and actions can be a contradiction, can’t you grasp that?
    People can self-harm without suicidal intent whilst at exactly the same time not wanting to.

  • “Catastrophizing” in CBT terminology means magnifying commonplace disappointments into catastrophes.

    er I think when people are experiencing things like loss of income, home, rape,etc they’re not exactly everyday little disappointments. I’ve never condemned anyone for wanting to kill themselves. No saying that preventable social events leading to someone’s suicide can be a most unwilling suicide is not saying please hand over to psychiatrists for some drugging. When someone feels they have no option and don’t want to do it for want of a welfare payment it’s a preventable tragedy.

  • Well Ross, for people who are ‘in the closet’ about being a trekkie I help them to ‘come out’ and be proud as many Brits can be embarrassed about such things. Otherwise Trek therapy for non-trekkers involves a bit of Klingon, Borg-stropping, Romulan Ale, being checked out with a tricorder with flashing lights and sounds effects [appreciate that’s hard to do online]

  • irenecardenas – when I’ve watched programme’s about tribes in the Amazon and elsewhere it’s very humbling. They build their homes from the materials around them, have to hunt and chop down their food. They live such a natural and better life in so many ways.

  • I have indeed stated they felt they had no other option, and that I can appreciate feeling that.
    I don’t use the language of CBT such as ‘catastrophising’ [just as we don’t use DSM diagnoses], so to me that is pathologising, whether you apply that to me or others.
    Yes I view their circumstances as having been catastrophic for them and a tragic loss – we all ‘paint’ our thoughts about others situations.

    “In my view, it’s reasonable to say that, in some (rare) instances, some people are faced with choice-less situations”

    Thank you, I think that’s all I needed acknowledged.

    “Unless or until you can concede that point (i.e., that the suicides of people facing homelessness are their choice), I am done with this conversation”

    It’s a “choice” but people can feel they have no other option, and not really want to do what they’re doing, but can’t face or do the remaining options.
    I’m saying it’s a choice that people can go into unwillingly

  • Sure, only in the US they are more under check. We have the legal protections against detention that I spelled out earlier plus a great system of medical malpractice -which can literally bankrupt them- that combined have them under control, much more under control than in Europe. Morally speaking though, I agree they are not better.

    that’s a fair point I accept that

  • 2- The whole thing is fun in the sense that I know I could not have this dialogue with a shrink in the UK, or anywhere else in Western Europe for that matter.

    I can think of critical thinking UK shrinks and ex shrinks who would happily debate with you, some of them have blogged here.
    For the hard line medical model types, if you were at an event they would shut off from you relentlessly telling them they want everyone drugged and incarcerated – that’s not the best tactical strategy for gaining allies. There’s only a point to keep hammering it home if the other person is denying that reality

  • Jonah – I’m saying I understand why they feel they have little choice – compassion – I’ve never advocated a prohibition on suicide and yes they are unnecessary tragedies because if policies were not so punitive people wouldn’t be placed in the position of considering that. It’s not my catastrophy, it was theirs, you can pathologise my feelings if you choose that doesn’t bother me

  • I wasn’t aware people needed to be ‘excused’ for killing themselves.
    Some physically sick/disabled/mentally distress/unemployed people ARE being thrown out of their homes because of welfare/housing policies and don’t have the choice, ‘epidemic’ no, but one entirely preventable death is too much for me.
    ‘Catastrophising’? It IS a catastrophy if you’re unemployed or cannot work but policies and impossible faceless systems have conspired to take away the practical ability to live. In those circumstances people don’t need CBT, they need food and a roof. The ‘safety net’ isn’t always there because various rules and conditions can mean months of no payment.

    I know you can technically argue any act is a choice, but it isn’t an academic exercise when it comes to real life.

  • Scott thanks for confirming who you are, I wasn’t certain and that’s why it’s always worth asking who a person is, I hope you didn’t actually place that bet cannotsay.

    Sometimes I don’t feel comfortable here either because; I don’t worship Szasz, do see Capitalism as contributing to mental distress, that it’s assumed I’m hating anyone who votes Conservative/Republican [which I don’t], that I’m telling lies about how government policies in the UK are impacting on people in my country purely to discredit a conservative government [which I’m not], that being ‘left’ leaning automatically means I want massive state intrusion in private life and no freedom [I don't], that unless I sign up to all suicide/murder is fine in the name of freedom then I must be supporting lifelong drugging and detainment by psychiatrists in hospitals [which I don’t].

    I accept that US psychiatry services are not the same as the UK, they are harder to get out of.

    Equally,[and much more importantly] I’ve found many people here offering; enlightenment, willingness to engage and debate even when it’s painful and from very different positions,willingness to listen, great breadth of knowledge and experience which I’m learning from,willingness to consider my experiences and views, some shared thinking, humour, warmth, genuine curiosity [of the best kind],and inspiration.

    It’s more than psychiatry which needs to change, it’s all our systems and structures, the social fabric of our societies, otherwise how will we get people on board who have never experienced psychiatry if we’re not willing to debate the difficult questions other than in a linear fashion.
    Man on the street isn’t going to grasp any suicide tough shit, any crime go to jail, and I could bet £100 on that

  • I haven’t stated there is an ‘epidemic’ caused by big banks, the situation in the UK is more complex than you have knowledge of. It’s easy to say oh well be homeless or there’s a safety net, it’s not as simple as that, these things are not black & white.
    There is distress and suicide which is preventable, I can’t be that cold, and some of these issues are not directly attributable to psychiatry – it doesn’t exist in a vacuum

  • sometimes it isn’t a choice that people truly desire, but a lack of options to continue living.
    Those who have killed themselves because of losing their homes/incomes wanted to live.

  • Vanessa I appreciate you speaking of your friend diagnosed as autistic, my relative is very verbal but struggles with the nuances of social interaction, i.e. give and take, takes things literally, and can have very explosive rages. I know she would not consider herself diseased or sick [neither do I], I do however worry greatly about what will happen to her when her parents are no longer here as she doesn’t have independent living skills and would need social security support and possibly a support worker of her choosing to assist her with cooking a meal etc, and our current welfare system is vicious and punishing.
    Your friend is right about the rest of us taking ourselves too seriously so may I for one moment offer some light tongue-in-cheek humour ridiculing psychiatry’s approach to suicidal feelings.

    The Ferguson Safety Smock for suicidal inmates and patients

    Feast your eyes on this product:

    http://www.preventsuicide.com/index.htm

    That’s me on the right, first thing in the morning before a hairbrush, I’ve no idea who the hairy geezer beside me is [actually I’m told he’s the CEO of the company].

    http://www.preventsuicide.com/faq.htm

    Now I can’t take this smock off when wearing it [looks very fetching] because it’s made from incredibly strong fabric and apparently it’s “not designed to prevent exhibitionism. It’s for people who wish to be clothed, which is the majority of suicidal inmates”.

    Nah not me, personally I prefer to be naked when I’m suicidal.

    Now please look at this additional product – the sani-belt for suicidal and self-destructive females:

    http://www.preventsuicide.com/products.htm

    This does suggest that there are an extraordinary number of suicides as a result of using sanitary products as the method. I want to reassure readers that I have put this to the test under scientific conditions [I wore a white coat].
    I placed two tampons up each nostril, and smothered my mouth with an Always Ultra [with wings]. I even had a medic on standby just in case of respiratory failure. The results of my scientific experiments were that suffocation by sanitary products is quite difficult achieve.

    “The use of Ferguson products has enhanced our safety standards. It has reduced malingering by 100%.”
    – Russ Ford,Senior Nursing Officer, Bermuda Dept. of Corrections

    Ah yes he’s absolutely right of course wearing these smocks ensures there’s no ‘dramatic’ self-harm, no fake suicidal behaviour. These products really do make the jobs of Samaritan’s and psych services that much easier.

    I am available for smock modelling please contact my agent for details of my fees.

  • I would never get anyone hospitalised unless they asked me to, I personally cannot act against a person’s wishes and wouldn’t want to be in a position where I was expected to.
    I’ve written about this elsewhere,for me being pro-choice in my life means doing what a person wants irrespective of whether I agree or would want it for myself, that is the essence of advocacy.
    I wasn’t sure if Scott was a psychologist or psychiatrist [sometimes it can be hard to tell in the UK I wanted to check] and there are many many people who can sell themselves as good, and that’s not the exclusive preserve of psychiatrists. Szasz is your guru not mine, we have some ‘good’ psychiatrists too, some of them have written here.
    I enquired about the shades of grey not suggesting we leave unlimited powers to psychiatrists forevermore, I stressed this repeatedly so stop misrepresenting me, you devalue your own arguments by insisting I am saying something I’m not.

    You’re wrong about advance directives, they are not always followed in general medicine just as they are not always disrespected in psychiatry, agreed it’s a much tougher battle with less success but some people’s directives on their choices within services are followed. Where we would agree is that directives on no admission/no treatment are not followed and are overridden, but overrall you make everything very black & white.

  • When I’m on a train or tube and there’s a ‘fatality on the line’ and we all know what it means it feels like glass in my eyes when I listen to people around me tutting because they will be late, and how “selfish” is this person.
    I want to scream out SOMEONE HAS LOST THEIR LIFE, this person was someone’s mum, dad, brother, sister, grandmother, grandfather, partner, husband, wife. We’ve had newspaper articles berating people who die by suicide on a train line.

  • “..This hypothesis shifts the responsibility from the ‘schizophrenic’ to the surrounding group, and of course the group does not particularly like that”

    Agree Morias, that’s one reason why Laing was so despised by family organisations wedded to the medical model.

    “A very different story from ‘disorders’ such a schizophrenia where the genes have not been found and the only evidence that there is a genetic component comes from those ridiculously limited and flawed twin and adoption studies”

    Absolutely agreed.

    The debate here regarding autism seems to be around whether it’s a “brain processing” issue or “developmental”, I’m not finding either useful..

  • “If that 19 year old girl wants to end her life too bad for her and her family/friends”.

    cannotsay, I can respectfully agree to differ but that’s quite a brittle statement, have you ever lost anyone close to you by suicide? [and I will stress again that I make no calls for forced detainment with forced drugging forevermore]. Would you take same view of the 15 yr old dying of starvation through eating distress?

    “I have nothing but contempt for people like you who bring these false analogies and false choices to justify your ever increasing demands for totalitarian social control powers”.

    I don’t know Scott, I’ve only just ‘met’ him/her these last few days [are you a psychiatrist Scott?]but whether you like or loathe Scott, views are being expressed which you would have to engage with if this were an open global debate with all our governments asking ok what shall we do? Let’s have the entire electorate decide. You would have to engage with these questions.

    So Scott can I ask you, what do you think of the idea of people being detained for short periods for only a limited range of reasons with NO forced treatment?
    And how about if psychiatrists didn’t make those decisions?

    cannotsay – I would also point out that some people have advance directives which state what they do and don’t want in a crisis, so if some people did want things you wouldn’t want for yourself are we going to respect them or only respect what we approve of?

  • Sigh Jen, not a straight forward answer..there are self-harm survivor-led groups but they are less politicised than they used to be. There is one especially good service despite cuts to funding, they offer one of the very few non-medical [non-residential] sanctuary;
    http://www.lslcs.org.uk/how-can-we-help/dial-house
    In terms of advocacy, our advocacy services have been decimated for a number of reasons, I’ve always carried the fantasy of an advocacy service specific to A&E [ER], there was even professional support for this, but funders are fixated on cessation as an outcome measure, not helping people to seek emergency medical treatment without all the associated humiliation and crap.
    As for suicide being caused by current government policies, I’m ashamed to say that British psych survivor groups [including HV] are not really addressing this, it’s physical disability activists who are way ahead of us in this respect.

  • Ross it’s a choice to read and respond, no one’s suggesting you have to be the official or sole defender of CBT for the entire profession, and no blogger/poster is required to respond any more than they want to. I won’t be around for a while in a day or so, so I won’t be writing on MiA during that time, I won’t feel compelled to reach a computer to defend anything even though I could if I really wanted to. If it’s not helpful to you, then give yourself a break.

  • RVAT…I have another therapy ssnerch…making up different explanations for existing acronyms;

    Cognitive Response Action Plan [CRAP]

    Wellness Affective Neuro Knowledge [WANK]

    Transient Intermittent Therapy [TiT]

    Behavioural Appropriate Limited Liaison Sessions [BALLS]

    Doing Bollocks Therapy and Diabolical Behaviour Therapy [DBT]

    2 friends came up with;

    Dialectical Insight with Cognitive Kneecapping [DICK]

    Professionals Really Into Cognitive Kneecapping [PRICK]

    And of course Can’t be Tossed and Can’t Believe Therapist [CBT].

    *Humour Alert*
    I’m sorry if this offends anyone doing therapy either as a service user or as a therapist, but we do need to have some humour about the issues sometimes to lighten the load. Survivors can have very dark humour here, I’ll tell you more about that sometime, it helps us to survive, just as medics have renowned dark humour to help them get through stressful work.

  • ssenerch – you’d find people who work with rape and domestic violence victims have little truck with CBT.
    People who have been medically tortured – sutured and stapled with no local anaesthetic, have these experiences ‘reframed’ for them, or silenced with ‘that was then this is now’ as though being deliberately put in pain is something people can just brush under the carpet.

  • ssenrch – You remind me that often survivors will say that the best conversations they have are with domestic staff.
    I sometimes feel that the more ‘qualified’ people become the greater the disconnect, unless they are able to transcend some of that training. I think of a friend who trained as a psychologist who readily admits to junking most of her training in her head. Nurses and psychologists are required to do CBT now, need those qualifications to progress in clinical practise, but wouldn’t it great if they could choose not to, or get ‘qualified’ in survivor defined approaches

  • I question therapy tenets ssenrch but there are decent mental health workers out there from all disciplines, and it can be useful to speak with someone who isn’t close to your life. Maybe the most helpful approach people with less ‘intervention’?
    If I were given a of sum of money to set up a non-medical community resource for people in distress, both residential and drop-in I’d not exclude any therapist/psychiatrist/nurse/social worker/psychologist from applying just as not everyone who has been through the system is automatically someone I’d want supporting me in distress. It comes down to human qualities, attitude, and ability to work with someone within their beliefs.
    I take your point about therapy-life context disconnect, that’s often the case, just as it is with psychiatrists.

  • ssenrch – stigmatizing behavioral therapy language, peer pressure/shaming (if you feel bad it means you’re not working hard enough at correcting your bad, faulty thoughts), lazy cop-out approach to social control, and people fawning over it

    This is what I struggle with, when CBT and other BT’s don’t produce the desired results it’s because you’re not trying hard enough rather than it simply not being suitable.How is this different to taking meds, this not producing the desired results and it meaning you’re ‘treatment resistant’?

  • yes ssenrch and this becomes ever more pertinent when people carry out the one action which psychiatry AND therapists struggle with the most – self-harm [the type without suicidal intent]. Many struggle when that can be a life saving act for some people and can miss the context in which it occurs. Put an animal in a cage and if biting the fingers put through the bars doesn’t achieve anything other than a slap then ultimately the animal will chew it’s own tail. Vivisection animals in cages, people in cages [hospitals, or virtual in the community or by environment/circumstances]. they look the same.
    This is why people with any history of self-harm [past or present] can be refused CBT

  • My depressed states have been no more “distorted” or “irrational” than my happy states have been. This is one of the big lies of our culture, I think – that happiness is the only really rational response to life, and to be unhappy means that you personally are doing something wrong – and it certainly seems that this is what CBT in part implies.

    oh god yes ssenerch, Barbara Ehrenreich smile or die:
    http://www.youtube.com/watch?v=u5um8QWWRvo

    This is the problem with CBT, it’s your fault, everything to do with how you react and behave, nothing to do with political systems, nothing to do with oppression. Taken to it’s political extreme the poor are blamed for being poor and the mad for their madness. Within the psych system, the people who suffer the most with this thinking are those labelled as PD, which is why I feel passionate about that area despite not having that diagnosis. I’ve seen women labelled as BPD effectively blamed for failing to cope with appalling life experiences. Those experiences are not the problem, their inability to cope with them is viewed as the problem as though the [verbal/physical/sexual/neglectful] abuse they’ve experienced is almost inconsequential – they need to get on with coping with it and stop being so ‘maladaptive’. The responses to those women are shocking and the most shocking are from therapists. Ruta Mazelis excellent publication ‘The Cutting Edge’which has been going for many years contains excellent survivors accounts, and Ruta’s work is very considered, worth checking out.

  • I demonstrated clearly enough that I understand the premise of CBT and other behavioural approaches,I referred to more than the material-mechanical, little of which you commented upon. As for simple-minded views wasting your time, I accept your apology for your poor communication. I don’t take it personally I’m a psych survivor, I’ve listened to far worse. In my experience at events medical model psychiatrists are more direct when they patronise and therapists more insidious [generalisation not characterisation]. Former hostage Brian Keenan once described leaving a therapists conference he once attended because he couldn’t understand what the hell they were talking about. At least with biopsychiatrists it’s a more direct argument.
    Therapists often don’t wish to explore power because compared to psychiatric power it seems so benign but it isn’t. Being head fucked isn’t much better than being body fucked. “Therapeutic communities” are an example of this, as are behaviour modification regimes using peer pressure [EDU’s]. Now you can say that’s not CBT but the roots of BT’s are in conditioning, and rarely are there opportunities to further discuss therapeutic power.TC’s like CBT and other types of BT are supposed to be some of the nice alternatives to biopsychiatry and whilst I’d defend any survivor’s right to access them, [everything does have a place] it’s remains reasonable to question the profession and it’s practises. TC’s use peer pressure to cajol people into behaving differently, I’d describe some of their work as little more than organised dog fighting.

  • A lot of people with “so called mental illnesses” already end up in prison. If there isn’t an alternative, then how is that any different than criminalizing “mental illness”?

    I have to agree with that Scott, and I also agree that these questions are not remotely easy, they are challenging and so they should be. At this moment in time I’d like to see some alternative framework which doesn’t involve long term drugging/forced treatment of any kind but makes some provision for limited short term holding for specific circumstances such as the starving young or suicidal, and special pleading for those who have committed non-violent offences who were clearly distressed at the time, and alternative provision for them to go for a while to look at what’s happening [without forced drugging].

    We’ll have to agree to differ cannotsay, I can respect that.

  • I was referring to the question of limited short term holding without forced drugging, I have repeated that several times to make it clear, so I cannot be clearer. Having attempted to die and lost several friends by suicide it’s very personal to me too. With my friends I’d say that for two of them it was the right decision for them, but the other three it’s not clear cut.
    I’ve made it clear I respect people’s right to choose and support physician assisted dying, and I’d go even further and say that Dignitas should consider requests for unbearable long term mental distress as well terminal physical conditions because overdosing every week for months until all your organs pack it is a really shitty way to die, and one of my friends for whom is was the right decision for her should have had an easier way out than the hell she went through. On the other hand I first attempted when I was a teenager I don’t think I was in a position then by virtue of my age to see everything clearly – and yes the admission didn’t help me, although ironically sometimes you start fighting to live just to escape them! Suicide and people committing crimes whilst very distressed are not black and white, if I had torched the pet shop because of the reptiles within them which my voices told me were going to attack me, I would have gone to prison for a long time.
    I think there would need to be lawyers who did plead for mental distress and somewhere to go, not hospital, not prison, not drugging where there was help to make sense of things.

  • I can count on one hand how many politicians support survivors wishes, and I doubt many of them [both sides] have even considered Pharma, but both sides support corporate everything else, to all our detriment. Mental health legislation is not the sole issue which hurts survivors, it doesn’t exist in a vacuum and that’s not false or right or left.

  • I wouldn’t want to see anyone indefinitely locked up and drugged, but the memory of those women simply doesn’t fit the committed a crime or not scenario.
    Yes technically they have committed a crime, but it’s almost like the difference between premeditated murder and self-defence.
    For them starting a fire in a building where no one was inside was their ‘self-defence’ against a world where sometimes many people had committed violent crimes against them. Crimes such as arson can carry heavy sentences and distressed people don’t have a good time in jail.
    They do need help, not psychiatric, and not in the name of a DSM diagnosis but as hurt traumatised people. I don’t have the answers but it’s one of many questions which don’t easily fit into a post psychiatric world where everyone is totally ‘responsible’ all of the time. Our prisons are filled with people who shouldn’t be there because they are distressed and our high secure hospitals have contained some women who have never committed any offence [they are supposed to be for people who represent a serious risk to others]. I don’t even think they should be in a high secure hospital, prison yes. What shocked me more than anything, seeing a few women in high secure hospitals for no other reason than local services couldn’t cope with their self-harm. Forensic psych services and prisons are a shade of grey when it comes to those who have committed crimes but are clearly very distressed. Do they need special pleading – yes. Do you need some help – yes. So what help do we offer which is isn’t being drugged up in hospital or drugged up in prison?
    A post psychiatric world would have to consider these issues.
    None of us know with certainty if we *might* be in a position of being distressed and end up committing a crime – I remember my voices telling me certain things about the pet shop [containing animals which distress me], that they were going to escape and hurt me, I was close to going into that shop with petrol and a match, if I had I wouldn’t be here now. I had friends to talk to who helped stop me, but what if I hadn’t? Would you want to see me in prison anymore than drugged up in hospital?

    Young people with ‘anorexia’ is another tricky area. Imagine you’ve got a 4 stone 15 yr old daughter who is at deaths door, do you let her die or if there’s no amount of persuading, do you allow an IV or NG to be put in against her wishes for the shortest possible time?
    Now I detest the EDU regimes with a vengeance, I’ve seen what long term iatrogenic damage they do, there is no justification for years of relentless forced feeding using behavioural techniques [reward & punishment], I’ve seen some young women self-harm in response to that because when in an environment where you cannot express dissent it can sometimes be the sanest act. But could I watch a young person die in the name of their personal freedom, no I couldn’t, but I wouldn’t go beyond literally saving life and wouldn’t push anyone through those refeeding regimes over and over again.
    We’ve had a couple of high profile cases of older women taking their cases to the high court to stop forced feeding because they’ve had enough of ‘re-feeding’ and enough of their eating distress and want palliative care – I support them in doing so, as I support assisted dying for those who are terminally ill or suffering from a degenerative condition, I believe in the work of Dignitas – but they won’t see anyone on ‘psychiatric’ grounds.

    As for Scotts example, I’d offer some time to get physically well and have some support – non-medical sanctuary [like Soteria] but if he wanted to leave still experiencing differences in perception I wouldn’t stop him.

    Self-harm and suicide, really muddies the waters because if you’re admitted to Emergency after an OD you will be treated whether you want it or not but this isn’t fixed. There was case here of a women who drank antifreeze and went to hospital with an advance directive and her wishes were respected and she died.
    Why didn’t they forcibly treat her is a question many asked – others argued because of her diagnosis – ‘PD’. There are indications that people assigned that diagnosis are less likely to be saved than someone with a diagnosis of ‘psychosis’, because of their difference in perceived value.
    Self-harm without stated suicidal intent no matter how serious is readily ignored here, you can attend hospital repeatedly and go through a cursory psych assessment [5-10 mins] and that’s it you can go. A friend self-harmed over many months each week until she died, staff have given up on her.

    Taking away legislation to detain people and forcibly treat them doesn’t remove all the uncomfortable questions, they would still be there.
    We could take the position that anyone is free to kill themselves or others and take the consequences of that, but what if any were preventable with some assistance?
    I’ve known someone who was sectioned [committed] for a short period by a rare and deeply committed psychiatrist with no forced treatment. He did that to put a ‘pause’ into what was happening for her. I know he’s not common, but if he hadn’t done that I doubt she’d be here, I feel certain she would have died by suicide. He forced no treatment but she was away from her home for a short period where accessibility would have been easier.

    Now the another side of this is when enlightened practitioners have worked with people self-harming [without suicidal intent] as voluntary patients or in their homes where self-harm hasn’t been prevented but harm-minimisation approaches have been used [even with dangerous methods]. A psychologist had to teach support workers how to cut down a young woman’s ligatures and persuaded her to use a less dangerous ligature [stretchy socks]. Harm-minimisations has even been used with children as young as 8. HM is highly controversial for some survivors and staff alike but it is something I support and have taught to peers and health workers.

    I don’t have the answers, but I don’t believe in forced treatment other than in very time limited specific scenarios like a young person dying of starvation, but I think there may be a case for time limited containment without forced treatment to prevent serious risk [death]. My views may be contradictory and may not make sense, but they’re not fixed, I’m open to anything..I’m open to evolving and changing.

  • The Japanese renamed it:
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1472254/
    You’re right in your observation of the British alternative of ‘psychosis’, this is in common usage not only within psychiatry but also outside of it, and within HV activism, this is why descriptive plain English words work better like ‘voice hearer’.
    The DX summit is really interesting, I’ll be keen to learn what descriptions people want to use

  • Low self-esteem does not begin internally. It is also a product of our interactions with the external world.

    Yes ssenerch I’d agree with that.

    Many years ago Jeffrey Masson author of ‘Against Therapy’ visited the UK and I’ll never forget hearing him speak because the reaction to him from therapists was more angry and explosive than anything I’d ever seen before [even with staunchly medical model psychiatrists].
    At one of our ‘premier’ therapy institutes I’ve seen conference/training fliers with truly unpleasant titles to describe diagnostic groups which are as bad as any psychiatric descriptions, and on asking known ‘critical thinking’ therapists at events as to whether they would be prepared to work within their clients belief systems the answer was often NO.
    I’m not against the use of therapy or CBT, nor of anyone seeking it, everything has a place, but I do think the professions need to reflect alongside psychiatry, it all too often falls into psychiatry – bad, therapy – good, and it’s only not good if it’s poor practitioner competence. I don’t think debate should ever be shut down, even if we think we already know the conclusions for ourselves

  • ssenerch, I must empathise with your feelings about it having potential to be arrogant given I’ve been referred to as uneducated, simple-minded and time wasting without consideration of; stigmatising behavioural therapy language [maladaptive], violent group control through peer pressure behavioural regimes [eating disorder units], the social control use of it by governments [as a cheap alternative to real help with employment and with claims of “cure” for ‘mental illness’] and its dominance and limitations as a psychological intervention which is promoted, researched and funded to the exclusion of most other psychological and survivor defined approaches within mental health services.

  • Some people see themselves as broken because of what psychiatry has done to them, and some people do see the social, environmental and trauma, but still locate the problem or the fall out as residing within them. This is one of challenges, to engage people with very different outlooks and accept they may not always move to being unmedicated and/or not using services.

  • Scot, I posed the question about the validity of short term containment without forced treatment as I have known a couple of psychiatrists who have done that with people at grave risk to put a ‘pause’ into what’s happening for them.
    This is incredibly rare because 99.9% of psychiatrists would compel physical treatments. I would like to know what people think about this.
    The example you offer – I remember going to a friends house after being alarmed by his answerphone message which clearly indicated him to be at risk, so I raced around and found him in a completely disheveled incoherent state. I put water to his lips and progressed to feeding him. He went from being unable to speak a sentence to conversing with me no problem. This was a man who had been dosed up at maximum “therapeutic dosages” of a depot injection AND oral ‘antipsychotics’ for 12 years who went cold turkey and got off the lot which was hellishly difficult but he did it and never looked back.
    He told me that he realised that most of the times he had been sectioned [committed] he had been in that state. So he been subjected to all of that for want of food and drink. I could see how he would have appeared “sectionable” to others.
    Now in terms of ‘getting better’ beyond hydration/nutrition he would in no way fit any psychiatric definition of ‘better’. He lives with enduring difficulties, he isn’t ‘recovered’, he wouldn’t view things in terms of ‘recovery’ anyhow, but he chooses to live with his differences unmedicated and I fully support that.

  • Donna I like referring to PTS and leave off the ‘D’ bit, I also refer to ITS [Iatrogenic Traumatic Stress] because I can’t abide professionals denial that health services can induce their own trauma which can become as or more painful than what took us to services in the first place.
    What saddens me about some psychological interventions is that they can seek to help people ‘cope better’ with their crap circumstances. If someone is being bullied, they need the bullying to stop, not to cope better with being bullied!
    What distresses me for those deemed to be BPD is that if they have experienced appalling lives [which they commonly have], that the diagnosis frames the person as having failed to cope with their trauma, AND it’s their fault, and their expressions of distress are ‘maladaptive’. It’s total invalidation.

  • cannotsay2013,

    You’ll have to forgive my lack of knowledge about your criminal justice system, I am keen to learn.

    So is it the case in the US that a person deemed to be mentally ill can be locked up in prison as opposed to a psych hospital without having been convicted of a crime ‘in case’ they do?

    What I worry about are distressed people who have committed a crime being imprisoned when that would be the worst place for them like the women in our high secure psych services I referred to. Hospital isn’t right but neither is prison.
    Like you, I don’t want people locked up [anywhere] on the say so of a DSM diagnosis..I don’t have the answers, but there is some psych/criminal justice overlap which isn’t clear cut.

  • I know you weren’t Donna – I have seen it in others outside of here – but I do know you were not suggesting that.
    You’re quite correct in what you say about cigarettes as compared to other street drugs and food and how companies deliberately chemically addict us for their profits.
    The weaning off psych drugs is so variable and individual, I know someone who was on depot injections and oral ‘antipsychotics’ all at maximum ‘therapeutic’ [what a shitty term!] dosage for 12 years and he went completely cold turkey after escaping a section and it was hard, he was initially incontinent and it took months of terrible withdrawal effects but he came through it and never looked back. Whereas others come off it relatively easily, or as you say wean themselves off it gradually. Coming off gradually does seem to work best for most people who do so.
    Some have the health effects, one is now coming off lithium because of her kidneys but my friend on Clozapine has actually lost a friend through this very drug [agranulocytosis] so I think if that doesn’t do it for her nothing will, but they wouldn’t view their lives as being one of self-destruction and they’re not even brainwashed by psychiatry neither. I know this is very hard to grasp, it was for me, that sometimes people can have all the info, not be under duress, not be wedded to the medical model, but still take it. It never stops hurting..but then it should hurt, it’s testimony to the long term damage psychiatry inflicts. It’s like a nuclear weapon, even after the initial blast killing millions there are just as many millions suffering from radiation sickness and further out from the blast zone those affected long term with cancers. It takes many generations to recover. Even if we got rid of psychiatry tomorrow we would still have loved ones and peers remaining on drugs for the remainder of their lives, but I hold the hope of a generation never offered, never forced, and never using psych drugs. I won’t see that in my lifetime but I carry that beautiful dream – it will happen.
    My fear for now is, generally speaking, [this isn’t levied at you], my fear is that for whatever reasons people start or continue taking medication that I’ve seen a widening divide in our movements between those who take meds and those who don’t, and I really worry some of our peers will be left behind because I’ve seen people be rubbished for their choices and that doesn’t support anyone’s self-esteem. We must not allow a 2 tier system to develop. I’ve also witnessed this divide in other areas i.e. those who are employed, and those who are not or doing voluntary work, those who define themselves as being or in recovery and those who do not.
    These are the issues which have the potential to divide us more than anything and sometimes it even pits people against each other. Psychiatry and the political system that operates within is where it’s at. For friends and peers, I hold the hope, and try to find the common ground.

    Your kind, warm and generous words touch me, and especially at a time when I am not feeling good about myself and living, so I thank you.
    You have impressed me with your intellect and analysis, and I really like your relentlessness, I’d love to see you in action at an event!
    The sisterhood is blessed to have you.

  • I already knew that there are CBT practitioners such as British psychologist Richard Bentall who are opposed to biopsychiatry – it was you who said that you’d ‘never met a CBT practitioner who is opposed’.
    I had not distilled it solely to ‘idealist’ and ‘materialist’ perspectives, we can define anyone’s ideas we dislike as ‘dogmatic’.
    As for ‘wasting your time’, you don’t have to read what I say or talk to me, it’s your choice.

  • I feel a tad uneasy about the term neurodiversity, whilst respecting anyone’s right to choose that description for themselves it’s not one I would use for myself as it sounds too biological. I would feel I’d need a brain scan with rainbow colours or something like that to demonstrably show my difference was neuro. Within the HV movement voice hearing has been referred to as a difference, like being left handed, I accept that description although for myself it doesn’t quite sit right because at times my voices feel quite removed from being left handed and more like no hands or hundreds of hands.

  • Likewise Donna,
    Except the withdrawal from psych drugs is not like cutting on hamburgers or quitting cigarettes physiologically or emotionally.
    There street drug addicts who have also survived psychiatry would tell you that heroin withdrawal is a walk in the park compared to psych meds where for some people it’s taken years to get off them. I don’t think that ‘antipsychotics’ compare to cigarettes.
    Being a good friend or supportive peer doesn’t mean condoning, but we do have to accept that for some people no amount of gentle persuasion is going to cut it, I have friends who have taken medication for 40 years and that isn’t going to change. If kept on and on at them, no matter how creatively and nicely they would end up feeling hounded, how many years do you keep on at a person? It goes without saying that if I see any new evidence I offer it, I still take any opportunity to reach out to them, but I cannot chastise or disown them as I have seen others do. If I did that I would lose my humanity. I can love the person but not like everything they do.
    I know what you mean about choice, how far is it truly a choice but I can think of a couple of people for whom I can hand on heart say that for them I know it is their genuine choice. They are not under pressure or threat, they are not taking it in order to secure service or welfare support, and they have no angst about their decision and live decent lives.
    My personal philosophy in life is this – I cannot act against a person’s wishes ultimately [rightly or wrongly], that’s who I am. So if someone says to me ‘I’ve escaped from hospital the police are looking for me please will you hide me and say you haven’t seen me?’ – the answer is YES I will.
    Equally I’ve helped others secure detainment or medication because that’s their choice too.
    Szasz is very important to the American survivors movement and he stood for freedom of choice so that has to include choices we might never choose for ourselves.
    I think of one dear friend on Clozapine who goes to bed every night with a towel under her face because she has excess saliva and it hurts me to the core of my being, but in over 20 years I haven’t been able to persuade her to come off, but I do sometimes succeed in encouraging her to reduce the dose to a level more comfortable for her, and I have to take those small victories.
    I remember in my youth being an event I was very strident and out there and questioned why another young woman was poisoning herself etc, with age I’ve realised that even with the best will in the world not everyone is willing or able to take that step and if they can bear to endure it then I have to bear the pain of seeing it.

  • You mention anorexia – the most oppressive and humiliating individual and peer pressure behavioural regimes happen in EDU’s
    I guess the question is how structured and goal orientated do we need to be in how we help, when being there is not enough?
    Can we please expand the range of non-physical approaches beyond thought restructuring and behavioural based ones.
    Can we stop using such stigmatising and judgemental language within the CBT/DBT therapies [maladaptive]
    Can we stop using CBT and psychology training techniques to aid oppressive state practises.

  • I worry about all misbehaviour being dealt with by the criminal justice system, I’m thinking of women I’ve met in High Secure psych services convicted of crimes where no one was hurt but property was damaged i.e. arson. Psych forensic services are vile, really bad, really scary terrible places, but equally prison wouldn’t be appropriate neither. What I learnt from listening to those women was that there was typically never any intention to hurt anyone, but it was sadly the only way they could ask for help, and they’d had the most awful lives, filled with abuse, trauma and neglect. I know it’s an offense to start a fire but I just wouldn’t want to see those women in prison for years as much as I would not want to see them in high secure psychiatric forensic services.

  • The clinical description:

    Catatonia F20.2 ICD-10

    Catatonic Schizophrenia is dominated by extreme loss of movement of the body parts.
    The Catatonic Stupor is a motionless apathetic state in which the patient does not react to external stimuli.
    Individuals may be mute, rigid, show “waxy flexibility” in which they maintain positions after being placed in them by someone else for hours. Or, they resist movement in proportion to the force applied by the examiner.The catatonic phenomena may be combined with a dream-like state with vivid hallucinations.

    When I was diagnosed as having Schizophrenia in my youth I also had the diagnosis at one point of Catatonia. This is my description from my experience:

    Imagine fear and distress so great that your mind and body completely shut down. This is where I went when my voices attacked me.

    Imagine a retreat to the core of yourself where you are untouchable. Where you remain till it feels safer to be in the world.

    Look at how gracefully a bird glides across a lake, it’s head and upper body almost motionless, yet underneath the stillness, it’s feet vigorously paddle, unseen.

    This is Catatonia from the inside. You can see and hear but you can’t cry out or break free. You are encased in an extreme concentration of fear.

    I don’t view that experience as illness, I just wanted to share my personal description to contrast the clinical

  • Excerpts from ‘Learn to listen’

    Theo Stickley is a lecturer in mental health at the University of Nottingham
    24 February 2005 mentalhealth today

    “…Although presented as a psychological therapy, CBT is firmly wedded to the medical model. The analogy of the brain as hardware and thoughts as software is well established in the modern psyche. This way of thinking is present in the therapy world, as it is elsewhere…”

    “..CBT locates the client’s problems in their belief systems.Their beliefs about themselves and about the world are in some way wrong, inadequate,mal-adjusted. But while the focus is on a person’s ‘illness’, or ‘dysfunction’, the real problems that
    people with mental health problems (housing, poverty, social isolation, stigma, discrimination) are ignored. As Moloney and Kelly argue:4 ‘The overall outcome of CBT may be to contribute
    to the protection of those in positions of power in society by deflecting criticism from … social inequalities … and the abuse of power..”

    “..What about the enormous cultural differences often found between professionals and clients? If a therapist challenges different beliefs because of class, culture or religious differences, this is
    coercive practice. Besides which, while the therapist focuses on irrational beliefs they are completely missing the meaning that the person ascribes to these beliefs. CBT can be easily used to
    manipulate the client into social conformity and compliance to service driven regimes. Its principles are tried and tested, with positive results, among those who misbehave..”

    “Another component of CBT is psycho-education, based on a medical conception of distress. The therapist ‘educates’ the client about their illness”

    “CBT therapists may claim ‘scientific objectivity’. Foucault,however, would quickly observe that objectivity is meaningless when the therapist is in such a powerful position. Also, when in academic circles it has long been accepted that objective truth does not exist,how come CBT therapists act as if it does?”

    “…CBT has as much, if not more, to do with the personal relationship between the therapist and the client..”

  • I agree Donna never any point in doing that.

    The weight and insurance issue is worrying, here we’ve had payment offered to people to lose weight, but this isn’t offered to people with anorexia to gain weight!
    We’ve also had studies paying people to take medication…deep sigh..

  • Hi Richard, many thanks. I share your bug bear, that CBT can be viewed as the antidote to biological psychiatry because there is no single antidote but that’s what’s promoted/funded within services.

    Ross, I do grasp the basic premise of CBT to address vicious cycles in a person’s life by looking at their thoughts and what feelings and bodily sensations these trigger and resulting behaviour, I’ve critiqued problem solving therapy for a study and instigated amendments. Nurses/psychologists get sick of being expected to offer CBT irrespective of whether that’s what a person wants to the exclusion of anything else – they say so.
    If it doesn’t ‘work’ then you can just as easily be viewed as ‘treatment resistant’ as with any physical intervention, rather than it simply didn’t suit you.
    Most things have a place, and CBT does yes, but I resent it’s elevation to the exclusion of little else in terms of psychological interventions in my country, and I resent any intervention being used for the purposes of social arm wrestling [IATP] and that’s a critical difference with other sorts of psychological interventions, they are not being used for those purposes by the state.
    You said on Colonization or Postpsychiatry about changing the relationship with voices and relating to them to in the right way, my concern is if there are attempts to replace beliefs about them which are not of the voice hearer’s choosing, I know you would say that’s down to poor competence, nevertheless…

    Regarding DBT- it’s promoted as a “treatment of choice” in the UK for people who self-harm, but how is it a choice if that’s all the person is offered? DBT frames a person’s difficulties as “dysregulation” and the [often denied] goal of the intervention is cessation of self-harm. You might think that cessation is of course the best aim but not if your self-harm represents a life saving action and for some people it can be just that, therefore if it’s prised away by force it can up the risks not lessen them. You might think DBT can’t be forced but if a person is faced with the take this or sod off line is not what I’d define as ‘choice’.
    So the self-harm is framed as ‘maladaptive’ with abstinence as the goal but self-harm is not an ‘addiction’ to everyone. There is the “24 hour rule” where if the person self-harms they are not allowed to contact their therapist for said time, that could be construed as punitive, and imagine if A&E took that line – which they can’t both medically and psychiatrically, most service users are forced to undergo psychosocial “assessment” in A&E as a condition of receiving surgical repair and even physically restrained from leaving the department before this happens [assessment typically consists of 3-4 questions over 5-10 mins].
    I have seen survivors on the surface of it present an amended self to their therapist in order to keep their support but how they feel hasn’t changed one iota, or even worse they can show their unharmed arms but the therapist doesn’t realise the legs are bandaged instead.
    Attempting harm-minimisation of the self-harm [I can expand on that further if anyone would like me to], taking better care of oneself, or feeling a bit better in oneself is not good enough for some therapists when cessation is their goal. I know you could say that’s bad DBT, and as with CBT it comes down to a competent practitioner and of course I accept that any intervention can be badly applied, nevertheless..

    Ultimately, I’m of the view that human relationships trump any physical or psychological intervention. When most people refer to a ‘good’ therapist/health or social care professional, they’re not typically referring to an intervention but to the human qualities and attitude of that person, and connection with that person.

    On a lighter note – I’ve developed Rabid Verbal Abuse Therapy [RVAT], I use this with my medical contact lens and computer when it breaks. So here’s how it works;
    Blue screen – scream – tell computer it’s doing this to me quite deliberately and has it in for me – get hammer – threaten it with hammer – walk away – call friend who lets me know when it’s time to panic.
    Medical lens hurts/eye streaming – hurl rabid verbal abuse too obscene to write here – run to disabled toilet [more space for bottles/towel] – take lens out – tell lens it’s doing this to me quite deliberately and has it in for me – emerge from toilet appearing sane and reasonable [even though people have walked past it hearing me shout ‘Get in you bastard’].
    There is also a ‘by proxy’ version of this – computer

  • speaking of skin – self-injury scars – I like to promote the right to wear our skin whatever it looks like i.e. we are not obliged to cover up our scars when it’s a hot day

  • Speed, E. and Taggart, D. (2012) It’s your problem but you need us to help you fix it: the paradox at the heart of the IAPT agenda, Asylum Magazine for Democratic Psychiatry

    This is a really good article looking at the political use of CBT cloaking social issues, I can’t locate an electronic version and it’s too much to type from my paper copy, I don’t know whether Asylum or the authors could offer a copy, but it’s well worth reading because they explain it better than what I can.

    Also Theodore Stickely [Nottinham Uni] wrote a great paper critiquing CBT and likening it to Daleks [you have to watch Dr Who to know what that means], again, I don’t have an electronic copy but I’m sure if contacted he would offer an electronic copy

  • certainly is Sera! I take your point but it *can* be useful to speak with a trusted friend about everything you hate about your body and then to challenge each other about it [it can be humorous!]

  • Class consciousness is in poor taste and should be mocked; it is ludicrous that Republicans successfully argue that rich people should pay a lower tax rate.

    That’s happening here too, and its been suggested disabled people should consider working for less than the minimum wage [because of being lesser value].

  • “CBT therapists are so stupid they would try to make George W. Bush feel better by thinking positive thoughts, instead of holding him accountable for his crimes!”

    Maybe not so ignorant I can offer a more ordinary example regarding Exposure and response prevention which is offered by CBT therapists.
    My friend who is defined as having OCD was told she would get ERP and she said great what do I when can we start. The therapist said to her right now. The she told my friend ‘next time you feel compelled to clean – don’t’. That was it, that was the sum total of her therapy.
    It doesn’t inspire much faith,

  • Me too Ross, thanks for going there!

    Of course there are instances (many instances, I would think) in which purveyors of CBT ignore certain realities. But, as I mentioned earlier, that is not a problem limited to CBT practitioners. It pervades psychotherapy and our society generally.

    Then we’re firmly agreed on two counts Ross!

    I also don’t write it off, I think it can be useful for less life limiting difficulties, but I don’t think it scratches the surface of some difficulties because it doesn’t view them enough within the context of the persons whole life.

    DBT is the other popular psychological intervention here, and I’d levy much greater criticism of that because it purports to be one thing whilst being another..

  • try being at an event where psychiatrists insist that the CBT they will be offering to people as per IAPT’s main aim and the fact that people are not able or facilitated practically to meet the aim has NOTHING to do with them. That IS ignoring reality. Just like Jobcentres attempting ‘psychometric testing’ when they know it doesn’t matter how many tests they do to locate a persons “strengths” when they have no jobs to offer that person.

  • I feel it does ignore the material because it disregards the social and political reality of people’s lives by decontextualising and focusing on the individual.
    Your feelings and thinking are not ‘right’ and if you just ignore your feelings and think about things in the ‘rational’ way then you will realise that you don’t really have problems, you are the problem.
    To me giving that ethos to people that there is something ‘wrong’ with them and the way they deal with things, and that the person is so obviously wrong but it can be changed in a few sessions. I dislike brief therapies for that reason, because it invalidates the depth of people’s experiences and treats them as faulty automatons.
    Problems are real and people’s emotional responses to them are not just valid but also natural human responses to wounding experiences. I think that paying attention to feelings, listening to the messages in them and developing intuition and a deep emotional relationship with ourselves are more constructive and empowering tools than simply being told how to retrain our thinking about things.
    It’s not a mere ‘emotional response’ to feel bad and negative and for that to have an ongoing ‘ripple out’ effect, it’s justifiable traumatic distress

  • THANKYOU – for raising the socio-economic-political lack of attention within most CBT, it’s bloody killing us here, and I too don’t want CBT to adjust my response to the material world.

    Here you would think that CBT had the power to make the flowers bloom in spring and bring about peace in the middle east, it’s hailed as a panacea for ANYTHING, and promoted to death. We even have a whole service set up here whose main goal is to get people back into work as though CBT can create jobs which are not available, change employers attitudes towards people with a label, or fix the fact that some people can’t do it as required but are not allowed the slightest flexibility to be enabled to do it their way.
    In reality, it’s time limited often just 6 sessions as a quick fix, with many excluded from even accessing it [diagnosis of psychosis or history of self-harm].
    Most things have a place and so does CBT, but I reckon it’s use has been seriously over estimated, but here it’s the main ‘psychological treatment’.

    CBT – Can’t Believe Therapist..

  • Donna, yes it’s a great piece isn’t it.
    Psychiatry is up there at the top of the list but it doesn’t exist in a vacuum it’s readily facilitated by Capitalism.
    It’s a dog eat dog system which hurts the vulnerable, and inequality causes and maintains mental distress. Wealth creation doesn’t cascade down, the very rich and powerful happily feed off and even make money out of those very inequalities which can drive us mad.

  • • My husband who let me rest. While it didn’t feel good or healthy at the time, and worried many, perhaps, in the end, all that sleep wasn’t all bad either.

    I have a name for that – duvet surfing!
    Yes it’s something professionals and friends can get most worried about but sometimes it’s really neccessary. I always remember something Pat Deegan wrote about staring at the walls for long periods of time [months/years] and how that WAS doing something

  • nutrition really matters, we have food banks here with tinned food only, nothing fresh, and ‘breakfast clubs’ for children of parents who cannot afford to feed them. I watched a programme about poor US kids [can’t remember the state] and the kids spoke of being hungry, missing meals, using sachets of tomato ketchup with hot water to make “soup” and of their parents going without meals for them.

  • Our suicide rates are down for inpatients and up for community patients, this is because admissions are now pretty short and there is so little support available in the community. Right now because of housing/welfare/service cuts with a negative media actively demonising all sick and disabled people [which includes people defined as mentally ill], alongside unemployed and welfare recipients I’m seeing something very worrying. I’ve never listened to as many survivors with active plans for their deaths at the point of where they could lose their welfare and homes in addition to their support as I am right now. For them it wouldn’t be a choice.
    In terms of when do services decide to intervene, it’s quite arbitrary here, we’ve had high profile cases where one woman’s advance directive was respected after she drank antifreeze, whereas another went to the high court and was denied her desire to cease endless refeeding.
    It’s ironic that those who want to live feel they are might reach a position where they can’t and others don’t want them to because they’re not economically productive enough. Then those who truly do want out are allowed or denied their wishes according to – luck.
    I believe in physician assisted death for people whose conditions are terminal, degenerative, and intolerable to them. It’s just terrible to see quadriplegic people denied the right to end their own lives. Some people can afford to go to Dignitas [it takes about £10,000 because your body has to be flown back]but they won’t consider mental distress as a just cause for ending life – actually I think they should.
    Equally, there are times when being detained has saved lives and people have been grateful for that afterwards. I’m not adverse to a short period of detainment being used sometimes to put a ‘pause’ into what’s happening for a person, what I am opposed to would be any forced treatment within that

  • Jen I think there is a distinct difference for sure, and absolutely if you know that’s on the menu of course you won’t disclose it.

    How is it for self-harm without clear or expressed suicidal intent?
    Here it’s very easy to fall through the psych net even if attending A&E regularly with injuries which require surgical repair. The only difference now is we’re forced to undergo an “assessment”. I use that word loosely because it invariably means a 3 question 5 min interview which is purely backside covering. This is forced as in you cannot access medical treatment until you do this, or hospital security can restrain you until they arrive and before you leave. It’s known to be meaningless, an assessment which is a means to no end. People admitted for an OD are treated differently they are medically assessed and treated before this takes place.

  • if it wasn’t real life it would laughable wouldn’t it Stephen.
    I know women who carefully consider now whether they look “normal” enough before going to hospital. Bright colours can be interpreted as ‘manic’ and black is depressed.
    How do you reckon they’d classify my star trek costume?!

  • I say socio-political and not socio-economic because where our housing is concerned it’s ideology not economics. We have a form of ethnic cleansing happening here.

    Non-medical residential and non-residential sanctuaries [and helplines] are something survivor groups have been pushing for decades but we haven’t made much headway, we have very little. Even with what we do have, it’s doesn’t matter how much evidence there is that it helps and is what people want, they have to peddle twice as hard as statutory services to hold onto any funding.

    I get the impression that any expression of suicidal feelings gets hospitalised relatively easily in the US?
    Here’s it’s the opposite, you’re more likely to end up with no support, more so those with certain diagnoses.

  • simply put – here illness means out of some of your control [biological component] and disorder means within your control or failure to cope with trauma. The former is taken more ‘seriously’ than the latter and PD is viewed as hopeless and often ‘untreatable’ despite service rhetoric. It is the diagnosis psychiatrists themselves fear the most

  • True Stephen but more women actually die as a result of it through eating distress and psychiatrically our appearance has a greater bearing on diagnosis and notions of looking ‘better’ than for men. Care with appearance is more commented upon, women have found that if they put on a skirt and a bit of lipstick for ward round they are more likely to get leave/discharge [I reckon this should researched]. Women are more likely to be diagnosed purely on grounds of their appearance – a medical student told me of her psych placement where this psychiatrist who couldn’t even quote the diagnostic criteria for BPD told her that he could tell ‘just by looking at women’, as ‘they tended to wear too much eye pencil’. This prompted some of us to draw up spoof clothing and makeup mental state examination guides!

  • I look to the UK as an example of this, with all the news coming out about the demand for the de-medicalization of so-called “mental illness.” If people in “provider” roles here in the US got together, I believe they could make significant strides, although of course we are more medicalized and pharmaceuticalized, I think, than the UK (maybe I’m wrong in thinking that, though?)

    Laura, we have a tradition of collaborative working and ‘user involvement’ although I’d question how meaningful some of the latter is now. In research funders outcome measures broadly remain the same – treatment adherence and symptom reduction. As for service providers seriously standing together to demand change I wouldn’t be cracking open the champagne yet. There are many issues and negative developments they have failed to stand up and speak out against publicly both for and with us. There wasn’t public outcry over the introduction of ‘Care Clusters’ [I’ve posted that elsewhere] and ‘Payment by results’ [meaning payment for putting people through “evidence based” treatments]. Many nurses and social workers feel quite down trodden with little power, and psychology, psychiatry and survivor groups can also be in their own corners. We have some truly inspiring critical thinkers like Lucy Johnstone and Phil Thomas, and a sizable and growing group of professionals, but that’s some way from dismantling and replacing existing service provision. I doubt British service users are envisaging psychiatry’s replacement just yet and we don’t have as many developed survivor-led services as I suspect you may have.
    A nurse friend who works in New York tells me that housing is taken more seriously by your services but it is much much harder to get out of US services than it is British services. I think your services are more pharmaceuticalized, we have a big CBT drive here.

  • In considering alternatives to DSM such as Formulation we might also want to consider and share our own rich and varied terms to describe our experiences.

    Perhaps there could be a blog on this editors?

    Voice hearer is such a fine example because it doesn’t denote any specific model, you have to ask the person what their voices mean to them,i.e. where are they from/what are they etc.
    I also for example refer to ‘differences in perception’, and ‘iatrogenic trauma’. I never use the word ‘disorder’ so would refer to ‘eating distress’ for example.
    The two medical words I haven’t yet found alternatives for are depression and paranoia.
    I have a friend who names her diagnosed OCD as ‘Marigold’ [after the brand of Marigold kitchen gloves]

  • I remember a psychiatrist saying to me, ‘you dislike authority’ and I thought to myself er no you’re not an ‘authority’ to me. He was saying that because I didn’t agree with him. I have my own descriptions such as perceptual differences, voice hearer etc.
    So I rebelled against their delusion of ‘authority’, but I do worry about those who really do chose to take meds being chastised by those who don’t. We have to hold onto our humanity for all irrespective of whether we agree with their choices.
    I still maintain that those who get saddled with the PD tag are in an even worse position with the worst of all worlds, medication, long term psychological bullying, at greater risk of high secure services and hated, despised and feared. Even psychiatrists fear that diagnosis for themselves more than Schizophrenia because at least with that it’s viewed as separate from the person, a biological affliction [not that I support that]. Whereas for those deemed to be PD it’s viewed as integral and immovable, hopeless. I remember a forensic psychiatrist describing Schizophrenia and PD like this – a raspberry ripple ice cream with a cherry on the top. He viewed Schizophrenia as the cherry on the top which can be removed, and PD as the raspberry ripple sauce which cannot. My observation of survivors labelled as PD is that it has annihilated their sense of self to a greater degree than Schizophrenia which is far easier to disprove because there is no evidence of it being a biochemical imbalance or faulty gene. It’s much harder to disprove a ‘faulty’ personality. People defined as having psychosis who fail to recover are now being redefined as PD, this is quite a ploy by psychiatry at least here in the UK. I don’t feel our movements are addressing this at all, because Schizophrenia is the biological backbone of psychiatry but PD is the psychological backbone with powerful support from governments and the criminal justice system. We ignore this at our peril. The patient groups are probably worst case of Stockholm syndrome you will ever see, and some have clung to their diagnosis because they couldn’t get any other support in other services.
    For myself as someone who was diagnosed as Schizophrenic and pronounced at one point as incurable although I’ve made sense of much of my life I don’t have a recovery narrative. I can’t offer a recovery story, I experience enduring difficulties and don’t fit many descriptions [whether that’s directly stated or implied] of recovery which leaves me very isolated. I don’t fit in anywhere.

  • There is also a real need for non-medical asylum [with a residential option] at these times, somewhere to go with gentle support but there is so very little available, it’s a spit in the ocean

  • In the UK ‘suicide prevention strategies’ fail to address many of the socio-political factors which lead to suicide, as well as the obvious lack of availability of meaningful and chosen support, and how health services can directly and indirectly lead to suicide.
    This week a woman died by suicide because of being unable to pay her rent, this is because we have a national shortage of social housing and our governments answer to that is to reduce the housing benefit assistance people receive. This is available to people both in work and out of work, with the majority being in [poorly paid] work. There have also been suggestions from politicians that disabled people [sorry if the word disabed offends anyone] including psychiatric survivors should accept less than the minimum wage [being of lesser value]. This woman made it clear in her letter that her death was as a direct result of housing policy but politicians refused to admit this and explained away her death as being nothing to do with their policies, and insisted she must have had mental health problems. There is also official denial of other welfare suicides [by people who DO have recorded histories of mental distress] even though the documentation they left clearly stated that as the prime reason for their suicide. The desperation our mental health service users feel can denied in the press, people can be told they are not allowed to speak of it when it directly relates to government policy, i.e. cuts to services, benefits, housing, employment support. Or else they told they are selfish or lazy.
    Research now shows that claimants are now regarded as a separate ‘out group’, a distinct social group different to others, not properly human, not even possessing the same emotional range as others.
    Suicide as a direct result of health services action or inaction is also neatly covered up. I helped supervise some research which yielded shocking results, where psych services who specifically work in physical health services [called ‘liaison psychiatry] told A&E [Emergency Room] staff ‘yeah we know her she’ll probably kill herself but don’t worry you’ve got all your notes in order’.
    When psych services decide a person is ‘terminal’ there is no ‘palliative care’ and some are even told of the expectation of their death – which comes with no support.

  • we hate the Care Clusters here because it it’s not really an alternative it’s still diagnosis by numbers, you can easily see which diagnoses go into each cluster. Then each cluster has it’s “evidenced based” treatment i.e. drugs and/or CBT. I also dislike the fixation on ‘severity’ we have here. This means that people cannot access support unless they are face down on the floor in a really bad way so referrals are denied. Put aside how bad services are for one moment because we don’t a have fully functioning complete alternative set of services to go to instead. Due to severe cuts to our mental health budget people are being turned away and some of the NGO’s and survivor-led groups have also suffered many cuts to their funding.
    Yeah I’m thinking of saying if anyone asks me what my cluster is to reply Kellogs Crunchy Nut

  • I’m a voice hearer and I self-harm and understanding, making sense of your life trauma’s doesn’t in itself always heal everything. I thought it was the holy grail but it isn’t for everyone, and people like me have little place within the HV movement because we don’t have a recovery narrative. I almost feel like starting a group up for the unrecovered so we have somewhere to go.

  • Donna,
    I learnt about the toxic effects of physical treatments 30 years ago and I’m against forced treatment, that’s long done & dusted for me, ok.
    There are some people who choose [whether we like it not] to use “antipsychotics”, ‘mood stabilisers’, sedatives, etc on an ongoing basis, i.e. every day, for many years/decades.
    I know exactly what you mean about the nature of ‘choice’ because often survivors are not given the level of information you and I are knowledgeable of, and that’s one of the roles of informed survivors, to put out that information which I do and I can see you do.

    However, you have to face the fact there are survivors who are fully informed of the hazards or shelve those facts in their heads and they take them for a variety of reasons. Some have been on some sort of medication for so long they do not feel able to be completely without anything, and others fear they will lose any support they have, then others are not able to withstand either the physical effects of withdrawal or facing the reality of their unmedicated thoughts and feelings.
    I have good friends in this position and don’t you think I’ve talked extensively with them about this?

    Then there are those who use meds on a very different basis such as I described, ad hoc, short periods of time, like days to a month either with the heavy stuff or benzo’s/sleepers. For them using it very judiciously and as infrequently as possible can enable them to sleep, avoid coming to the attention of services, or keep their jobs and children.

    Now in an ideal world we can wish for them not to do so, but we do have to face the fact that whether we like or not some people will. So we have a choice to either chastise them, endlessly go on at them about how they are poisoning themselves, or, if it’s fairly clear that even with the best support in the world they are still going to use it, then accept however grudgingly that is ultimately their choice. I am not going to walk away from my friends and fellow survivors who take medication.

    Yes I find it hard to imagine consenting to ECT, [and not at all for psychosurgery] for myself, I cannot ever picture that, I think I’d rather die first, but I do grasp the hellish reality of hopelessness and despair that they subject themselves to these treatments. I see a parallel with self-harm here, ideally we don’t want to see anyone ending up needing surgical or medical repair for their self-harm but telling people to not self-harm won’t stop it from happening. So we offer harm-minimisation approaches for example to lessen the damage of self-harm and hold out a hand in the hope that alternatives can be located, so that self-harm becomes not the sole option.

  • Your words are highly pertinent Sera, I’ve seen body hatred destroy lives physically and spiritually and eating distress [my personal term] carries the highest mortality rate.
    It’s also an area where they has been so little activism from psychiatric EDU survivors, maybe because we live in such vicious body hating cultures that until there’s some societal shift it isn’t that easy to speak from the conference platform about it because the first thing people will be sizing up is the speaker’s body! EDU’s massively damage people, and some don’t survive them. Others end up being spat out after many years and declare them hopeless, at this point the BPD industry steps in. It’s psychological death..
    Before I was diagnosed as Schizophrenic I was in an EDU, just one admission but they did a lot of damage so that I couldn’t speak of it for a very long time. I witnessed things that to this day I will never come to terms with.
    For myself I came to the decision to accept my disgusting/gross/add a a whole ream of words..body. I thought to myself, well I’m never going to be XYZ, never going to feel ABC so I’ll accept feeling &%^****$!&^!. As I did that, I stopped fighting myself so much.
    In saying this I knew I couldn’t trust my own eyes so the use of scales I managed to turn around. With services they are a tyranny, but I turned them into a reassurance to myself that I hadn’t changed dress size overnight, but crucially changes did not dictate my existence.
    The hardest practical shift can be in taking the risk of one good meal a day, then two. I have suffered long term physical consequences and that saddens me but some of friends didn’t survive at all.
    I just wish the sisterhood would also be more supportive because women can sometimes be the hardest judges of other women and we shouldn’t!!!!
    Lol I like your humour, I can’t stand anyone commenting on “looking well” because what does it mean? A friend looked great the day before she was diagnosed with terminal cancer, and women are especially good at putting on a good face [and dress] because we know that care with appearance is viewed as indicator of our mental health – that subject is an essay..

  • I used to work with older people with dementia, Parkinson’s and Alzheimer’s Disease. I saw a woman transferred to the older psych services where she was given ECT and I was powerless to stop it. I couldn’t believe that this was happening because it’s adding brain injury to brain injury.
    I am against the use of ECT and psychosurgery – we still have a centre in the UK which does surgery on voluntary patients who request it typically as a ‘last resort’ treatment – no one should be lobotomized.
    I find your statement bizarre Bruce, if you had Parkinson’s why on earth would you want ECT especially given there are proper neurosurgical procedures for people with Parkinson’s to specifically target an area in the brain [hence being awake during surgery to speak/respond] which can reduce the dreadful tremors.
    No, I cannot accept your line of argument regarding ECT as a rapid treatment in psychosis, if you mean in the case of ‘catatonia’ [which I’ve experienced], no this is not necessary – people come out of that state with time, kindness, reassurance, regular communication making it clear there are no demands for a response, and basic physical care to ensure hydration etc. Using ECT is like using a sledgehammer. John Breeding has a video on ‘catatonia’.
    There’s plenty of clear evidence from survivors of lasting damage from ECT – loss of specific skills and large chunks of memory.

    Donna – Dr. Breggin states that if one wants to be a part of the reform movement of psychiatry, a basic rule should apply: No lobotomy whether it is electrical, chemical or surgical!!

    Yes – so long as we don’t ostracise those survivors who choose it. Most don’t choose ECT/psychosurgery so I’m referring to drugs, also not all drugs are horrific, I’m thinking of ad hoc judicious use of sleepers/benzo’s, in small amounts for limited periods of time it can help some people manage a crisis/get some sleep. Likewise there are others who find cannabis helpful in managing differences in perception. That’s a real no-no in the UK as British psychiatry is hell bent on cannabis being a cause of psychosis which I don’t buy, not when people have used after diagnosis! Also, if this were the case half or people under 25 would be hospitalised.

  • I always knew psychiatry was fundamentally wrong from my first admission, I just didn’t know why, how to articulate it, and how to survive as soon as I walked away. I sent a ‘Do you think you’re God?’ kind of letter at 18 yrs old to my psychiatrist who wanted me on depot injections for life, and I looked at others hollowed out by it and thought there has to be more to living than this.
    Surviving psychiatry wasn’t in itself the end point for me,despite a strong sense of self [I used to be an activist] as there are very few places I fit into now as I failed to ‘recover’ by most definitions. I experience enduring difficulties but we rarely see such accounts other than ‘before’ and ‘after’. Many of my dreams for change in my country haven’t been realised but I hold the hope that others will achieve them.

  • In the UK we now have ‘Care Clusters’, here it is:

    The Mental Health Care Clusters into which the presenting needs of the PATIENT may fall are:
    Care Cluster 0: Variance – Despite careful consideration of all the other Mental Health Care Clusters, this group of PATIENTS are not adequately described by any of their descriptions. PATIENTS who cannot be initially assigned to a Mental Health Care Cluster Super Class during the clustering process will be automatically assigned to this Mental Health Care Cluster.
    Care Cluster 1: Common Mental Health Problems (Low Severity) – This group of PATIENTS has definite but minor problems of depressed mood, anxiety or other disorder, but they do not present with any psychotic symptoms
    Care Cluster 2: Common Mental Health Problems (Low Severity with Greater Need) – This group of PATIENTS has definite but minor problems of depressed mood, anxiety or other disorder, but not with any psychotic symptoms. They may have already received care associated with Care Cluster 1 and require more specific intervention, or previously been successfully treated at a higher level but are re-presenting with low level symptoms
    Care Cluster 3: Non-Psychotic (Moderate Severity) – This group of PATIENTS have moderate problems involving depressed mood, anxiety or other disorder (not including psychosis)
    Care Cluster 4: Non-Psychotic (Severe) – This group of PATIENTS is characterised by severe depression and/or anxiety and/or other disorders, and increasing complexity of needs. They may experience disruption to function in everyday life and there is an increasing likelihood of significant risks.
    Care Cluster 5: Non-Psychotic Disorders (Very Severe) – This group of PATIENTS will be severely depressed and/or anxious and/or other. They will not present with hallucinations or delusions but may have some unreasonable beliefs. They may often be at high risk for suicide and they may present safeguarding issues and have severe disruption to everyday living.
    Care Cluster 6: Non-Psychotic Disorder of Over-Valued Ideas – This group of PATIENTS suffer from moderate to very severe disorders that are difficult to treat. This may include treatment resistant eating disorders, Obsessive Compulsive Disorder etc, where extreme beliefs are strongly held, some personality disorders, and enduring depression.
    Care Cluster 7: Enduring Non-Psychotic Disorders (High Disability) – This group of PATIENTS suffer from moderate to severe disorders that are very disabling. They will have received treatment for a number of years and although they may have an improvement in positive symptoms, considerable disability remains that is likely to affect role functioning in many ways.
    Care Cluster 8: Non-Psychotic Chaotic and Challenging Disorders – This group of PATIENTS will have a wide range of symptoms and chaotic and challenging lifestyles. They are characterised by moderate to very severe repeat deliberate self-harm and/or other impulsive behaviour and chaotic, over-dependant engagement, and are often hostile with services.
    Care Cluster 9: Cluster Under Review – Note: This Mental Health Care Cluster is under review by the Department of Health and should not be used.
    Care Cluster 10: First Episode Psychosis – This group of PATIENTS will be presenting to the Mental Health service for the first time with mild to severe psychotic phenomena. They may also have depressed mood and/or anxiety and/or other behaviours. Drinking or drug taking may be present but will not be the only problem.
    Care Cluster 11: Ongoing Recurrent Psychosis (Low Symptoms) – This group of PATIENTS have a history of psychotic symptoms that are currently controlled and causing minor problems if any at all. They are currently experiencing a period of recovery where they are capable of full or near functioning. However, there may be impairment in self-esteem and efficacy and vulnerability to life.
    Care Cluster 12: Ongoing or Recurrent Psychosis (High Disability) – This group of PATIENTS have a history of psychotic symptoms with a significant disability with major impact on role functioning. They are likely to be vulnerable to abuse or exploitation.
    Care Cluster 13: Ongoing or Recurrent Psychosis (High Symptoms and Disability) – This group of PATIENTS will have a history of psychotic symptoms which are not controlled. They will present with moderate to severe psychotic symptoms and some anxiety or depression. They have a significant disability with major impact on role functioning.
    Care Cluster 14: Psychotic Crisis – This group of PATIENTS will be experiencing an acute psychotic episode with severe symptoms that cause severe disruption to role functioning. They may present as vulnerable and a risk to others or themselves.
    Care Cluster 15: Severe Psychotic Depression – This group of PATIENTS will be suffering from an acute episode of moderate to severe depressive symptoms. Hallucinations and delusions will be present. It is likely that this group will present a risk of suicide and have disruption in many areas of their lives.
    Care Cluster 16: Dual Diagnosis – This group of PATIENTS have enduring, moderate to severe psychotic of affective symptoms with unstable, chaotic lifestyles and co-existing substance misuse. They may present a risk to self and others and engage poorly with services. Role functioning is often globally impaired.
    Care Cluster 17: Psychosis and Affective Disorder (Difficult to Engage) – This group of PATIENTS have moderate to severe psychotic symptoms with unstable, chaotic lifestyles. There may be some problems with drugs or alcohol not severe enough to warrant dual diagnosis care. This group have a history of non-concordance, are vulnerable, and engage poorly with services.
    Care Cluster 18: Cognitive Impairment (Low Need) – People who may be in the early stages of dementia (or who may have an organic brain disorder affecting their cognitive function) who have some memory problems, or other low level cognitive impairment, but who are still managing to cope reasonably well. Underlying reversible physical causes have been ruled out.
    Care Cluster 19: Cognitive Impairment or Dementia Complicated (Moderate Need) – People who have problems with their memory, and/or other aspects of cognitive functioning resulting in moderate problems looking after themselves and maintaining social relationships. Probable risk of self-neglect or harm to others and may be experiencing some anxiety or depression.
    Care Cluster 20: Cognitive Impairment or Dementia (High Need) – People with dementia who are having significant problems in looking after themselves and whose behaviour may challenge their carers or services. They may have high levels of anxiety or depression, psychotic symptoms, or significant problems such as aggression or agitation. They may not be aware of their problems. They are likely to be at high risk of self-neglect or harm to others, and there may be a significant risk of their care arrangements breaking down.
    Care Cluster 21: Cognitive Impairment or Dementia (High Physical or Engagement) – People with cognitive impairment or dementia who are having significant problems in looking after themselves, and whose physical condition is becoming increasingly frail. They may not be aware of their problems and there may be a significant risk of their care arrangements breaking down.

  • good piece, here psychiatrists pay lip service to the iatrogenic weight gain, they can even deny the metabolic changes which occur. It’s deeply painful to see articles with journalists passing negative comment about survivors weight and appearance when they have no idea as to why. Mental health workers and mags can do the diet/exercise talk but for many people it makes absolutely no difference how little they eat and how much they can manage to exercise, the meds make it a losing battle. I’ve seen women especially become suicidal because of the weight gain they’ve suffered.
    Constipation is miserable and again not taken seriously and osteoporosis is never discussed

  • Their film ‘Psychiatry an industry of death’ holds psychiatry responsible for the holocaust [yes I know their collusion but they were not alone] and for pretty much any other atrocity on the planet and features your Szasz, and I know one person in the film was embarrassed by how they used them. Now I’m not going to protest against Scientologists because 1] I’ve got better things to do 2] They take action against anyone criticising their work, you really don’t ever want to be on the wrong side of them

    Capitalism – is a dog eat dog system and hurts the vulnerable – which created the system of workhouses and asylums in the first place – horrifying to think that survivors actually support it. You can hide behind oh please don’t offend us by saying anything remotely “political” but I don’t care who is in power if their policies hurt those with the least power and resources John H was right, your position is contradictory.
    In Hungary homelessness has been criminalised, as you should know survivors are at greater risk of becoming homeless, so what would you say to Hungarian survivors? Oh sorry we can’t talk about that because it’s “political” as though psychiatry is The Enemy to the exclusion of all else and exists in a vacuum. So there are no political causations of distress [be that from the left and the right]? To deny the impact of inequality and political oppression on mental distress and as a cause of mental distress is a gross act of denial. Our Lucy Johnstone would never deny these things and she is the person to thanks for your celebrations

  • At what point are they *greedy*?

    That’s easy to answer – when they make money out of others poverty, misery,distress,disability or ilness – and – at the same time evade their taxes and take massive amounts of money out of the public purse.
    Over here that’s exactly what’s happening, it’s worth billions. We have corporations using people [many people with a mental illness diagnosis are vulnerable to this]on ‘Workfare’ – this is where people who have been thrown off disability benefits [including people with degenerative and even terminal conditions] are FORCED to work for these corporations or else their benefit of £71 a week is cut. Failure to comply means no money. This system costs billions making money for these corporations who are even replacing paid staff with the slave workforce they get for free!
    That acceptable to you?

  • I’m pro choice [how we name and frame our experiences and how we choose to manage/survive/recover. Someone asked me, ‘what if given the choice the person chose to define themselves as ill?’
    My answer had to be I’d have to respect that because if choice is to mean anything then we would have to accept people making choices we don’t like or wouldn’t choose for ourselves.
    So another issue is, we would still have a proportion of people describing themselves as ill long after the DSM is gone and they would still need our support.

  • well these are the questions some may be reluctant to look at both in the US and the UK, and some recoverists would chastise people for taking social security.
    I’ve said elsewhere that not everyone can work consistently enough in the long term [not just short periods of time]. Some people have never fitted into traditional working patterns and never will, some cannot do it consistently enough, and some need to do voluntary work and remain on benefits [this is allowed in some countries]. The removal of the DSM will not change these facts. It’s about valuing contributions to society which are not predicated solely on economic worth, and some collective responsibility in that, because we are all different. Even if psychiatry was removed tomorrow and replaced with survivor-run services accessed through the existing service provision structures, it still has to be paid for. Not all Americans have health insurance so what happens to them? Here only the rich have comprehensive private healthcare insurance including psych care, and that’s time limited and new applicants are not covered for any ‘pre-existing’ conditions. The political climate here is very sink or swim libertarian with ‘work as the solution’, politicians vilifying all disabled/sick/unemployed/vulnerable people to the degree that disability hate crime has risen, and some people have been left literally destitute. They have even suggested disabled people [including mad people] should work for less than the minimum wage [being people of lesser value], and those on Workfare can be kept there indefinitely doing slave labour for the profits of greedy corporations [paid for by tax payers]. We have food banks, you have food banks, that’s indefensible, we are not 3rd world countries. So in working towards the end of psychiatry we do have to consider that some people have more skills and resources than others, some have had better education and opportunities than others, and how poverty, and inequalities do have an impact upon human distress – to overlook this would be a gross act of denial.

  • The fund you refer to Sandra, it requires more than that because some survivors will simply never fit traditional working patterns or can’t work enough hours to be fully self-sufficient, and some need to remain doing voluntary work and this is one of the problems with our political systems, ours dictates that people are only worth their economic productivity and that ‘work is the solution’, but it isn’t always.

  • If a psychologist had the power to force me to sit through endless mind numbing therapy sessions I would object just as strongly….

    Amen to that, never underestimate the power of unwanted psychological interventions just because it doesn’t directly damage the brain. Peer pressure, loss of “privileges”, and punishment of a group if they don’t all comply is the stuff of nightmares and I too would fight as hard against that as forced physical treatments.

  • And this has been my point…even if psychiatry was replaced overnight with survivor-led services how are your peers going to access service provision if they’re not in your insurance system. Your health system is something of a nightmare vision to the UK, we’ve seen the programme’s documenting how your poor are left with practically nothing, or massive debt.
    You must know survivors who work for companies where the pay is so low they can avoid paying for health insurance with their workers requiring food stamps. American activists can’t all have the decent health insurances, homes and better paid jobs.
    Those of us who some of you would might define as ‘left’, ‘marxist’ or ‘communist’ have this belief of collective responsibility. Our government is right wing with increasing state intervention into our lives and if it remains this way I can easily think of several key politicians who would say great we can just use the mental health budget for something else. The economic arguments and structures will need to be thought through for both our countries. Getting rid of DSM isn’t the end point, it’s the starting point, and ‘recovery’ services will have to ensure they don’t fall into the same trap as psychiatric tyranny with the ‘do it our way or not at all’.

    As for DSM book – I wouldn’t using a copy for toilet paper!

  • Thanks John.

    At the same time as the BPS statement there are also psychologists wanting to take on the role of the AMHP and psychiatrists who would be more than happy for them to do so as that breaks down the ‘you don’t do the hard stuff’ line of argument. We need psychologists to resist the temptation to do that work.

    It’s interesting how survivors who were binned in the old style asylums and the modern brightly lit rabbit hutches in general hospitals will often say how much they preferred the old style. Put aside the horror of medication for one moment, what was appreciated was the space to be solitary and hide out in corners, and the grounds to walk in. Also the need at times to not be at home and in a different environment and to be relieved of every day pressures. Something the survivor movement in the UK really wanted was access to non-medical asylum but we remain a long way from that. The few alternatives to admission get hijacked by health and the few non-residential survivor-led services have seen their funding cut even though they work.

  • Makes me sad too but I’m not comfortable with diagnosing our peers, is Stockholm Syndrome in the DSM?

    Putting aside the description I know exactly what you mean, but are any of you aware of the most entrenched examples of this? It’s not within voice hearers diagnosed as Schizophrenic/psychosic – it’s within those who are [in my view] the most unfortunate of all, those deemed to be PD.

    Have you had any contact with key individuals and groups? Boy now that’s hard work!
    They promote their diagnoses, they promote their psychiatrists [and US guru Marsha Linehan, my god US materials on PD are the most vile I’ve ever read], and they paste their diagnoses onto everyone. They don’t want it removed from the DSM/ICD, they want it to be “better understood”. This is a group of people you will have to engage with at some point because PD is the diagnostic and political frontline of psychiatry as much as Schizophrenia but it’s harder [and there are massive industries in both our countries]. Harder because it’s easy to disprove the lack of biological basis of psychosis, that’s a piece of cake, but disproving a “flawed” personality – psychology and psychiatry won’t easily let go of that. Remember – most people in our secure services get that diagnosis, and more and more people with a diagnosis of psychosis who ‘fail’ to ‘recover’ are also being parked into either that diagnosis or those services [groups]. Seriously people, you gotta go there but it’s much harder work than within the HV movement, that’s a walk in the park by comparison.

    You are looking at people who have been brainwashed and damaged to such a degree they don’t know it. It’s painful to see survivors policing their every thought and emotion because that’s what they’ve been taught to do. They will refer to having a ‘dysregulated day’. Everything they do is framed by it. At least with those in the grip of the medical model view their psychosis as something ‘other’ which happens to them, but with PD, it IS them to them.

    I can see what has happened for some – some are EDU [eating disorder unit] rejects, they spent years in and out of EDU’s going through those diabolical peer pressure regimes of forced feeding. Some are physically very damaged and if they end up outside of the ‘anorexic’ range then the EDU’s toss them aside and they have nowhere to go. The only service which will take them in is PD, and they get labelled as BPD. They then cling to that service, so thankful anyone would even see them and the rest is history, but don’t underestimate their influence. Some have considerable influence in promoting the PD industry they are like psychiatrists.

    I’ve witnessed the torture of others who end up in A&E [British Emergency Room]when they have a PD diagnosis, their treatment of their self-harm is far worse than if you have a diagnosis of psychosis, their lives are viewed as utterly worthless. Given they are viewed as worthless, I can appreciate why they then cling to the professional superstars who will have them.

    Although I feel deeply sad for them that has not stopped me from challenging the promoters for whom it is their paid or unpaid work, and it’s hard! What I’ve observed is that for those who clearly see there is something very wrong [with the label/services/survivor groups] and are desperately unhappy is that they have nowhere to go! There’s HV movement equivalent for them. So individuals such as myself can end up putting across their views to the orgs because I don’t have the diagnosis so I can’t be put down as a disgruntled service user not accepting my diagnosis. However they need to be empowered to speak for themselves so that their diagnosis isn’t the easy put down.

  • this is an interesting comment I’ve copied from the Guardian because it touches on the UK and the US on some of the issues I have raised:

    Look into the origins of the biopsychosocial model of illness & its use by Unum in the US to deny disability claims; how the UK government (Labour, at the time) bought in Unum to set up what are now called the Work Capability Assessments that are administered by ATOS. Unum’s behaviour and denial of illnesses & disabilities, with no goal other than to avoid paying out on health insurance claims, has led to it being declared “an outlaw company” in some US states & to being banned from operating in some countries (like New Zealand).

    DSM-5 has been, as I understand it, strongly influenced by such. In the same way that the Coalition is still influenced by what used to be called UnumProvident Centre for Psychosocial and Disability Research at Cardiff University but has since dropped the “UnumProvident” bit of the name. It determines that some disabilities that have been shown by tests & studies (for example, functional MRI scans of people with and without the various diabilities) to be neurological in origin or to be caused by a disruption of/in the Central Nervous System are a learned behaviour, a personal choice, or, to put it another way “all in the mind”.

    Do a websearch for “biopsychosocial model of illness unum”, or have a look at this sample of links:

    http://dpac.uk.net/2012/04/a-tale-of-two-models-disabled-people-vs-unum-atos-government-and-disability-charities-debbie-jolly/

    https://mikesivier.wordpress.com/2013/01/18/unum-atos-the-dwp-and-the-wca-who-gets-the-blame-for-the-biopsychosocial-saga/

    http://www.redpepper.org.uk/getting-rich-on-disability-denial/

  • Made me smile;

    Diagnostic Criteria for DSM-IV½

    401.10 Bad Hair Day

    A pervasive pattern of distorted thinking, self-pity and sensitivity to stimuli lasting at least four hours after time for getting out of bed.
    BHD indicated by at least five (or more) of the following within a two-hour period:
    Wakes up with difficulty
    Does not recognize bedroom or other rooms or dwelling.
    Gets out of wrong side of bed due to mystery lump under the duvet.
    Finds is still wearing clothes worn yesterday.
    Can’t be bothered to shave / shower / shampoo / use deodorant.
    Cuts self when shaving face or legs.
    Wears clothing retrieved from laundry basket.
    Colour combinations appear vile to self or others …

  • ps the pamphlet title I forgot to say said ‘aborting affected feotuses’.
    I managed to get thrown out of a Mind day centre a long time ago on the grounds that I was mad, no kidding.
    The users of the centre invited me to organise an event with them which I did, then they invited me back when the managers of the centre had organised a talk [they didn’t want] on ECT by a consultant psychiatrist. I’d just read Breggin’s book so used his thinking and evidence to counter the psychiatrists arguments, and if I say so myself, I was on form that day. The survivors were very pleased with the discussion but the psychiatrist was so incensed I’m told when he left the centre he was stomping and complained to the managers who decided that such a thorough critique of his presentation could only come from someone who was quite disturbed and mad, so they banned me from returning.

  • Thanks Duane, not everyone appreciates my raw honesty and passion, but I really appreciate anyone who will hear me out and not run a mile or throw me in the bin!

    May I share some memories of difference with you?

    I always remember many many years ago attending a notorious relatives group – let’s say they were at the mafia end of the spectrum. Also, a very medically minded survivor group. I went there because although I knew our views would be different I wanted to understand them. At the relatives group I was the antichrist. Literally, if anyone had possessed holy water I’m sure it would have been thrown at me. They had a member of their medico-legal committee visit and she made the mistake of attacking a respected survivor group [Survivors Speak Out] and so I did er take her to task shall we say. I found myself stalked for a few conferences and this person would jump up every time after I’d spoken and shriek that I was telling people to stop taking their meds! I never did that, so it was easy to counter but it became somewhat comical because the audience would answer for me, ‘oh no she didn’t’, it was like Punch & Judy.
    I attended one of their meetings where a prominent psychiatrist was talking about the latest “genetic find” [complete bollocks of course] and it was an extraordinary experience, they hissed as I entered the room. I sat down and listened to the presentation and noticed pamphlets given this psychiatrist ran a ‘genetic counselling clinic’ it made my hair stand on end. I said to her, ‘so were talking eugenics then? She coolly replied ‘well it has to be discussed’.
    One of the women associated with the relatives group made the effort to get to know me, and I her. We had very different views but respected of each other that they were deeply considered and no knee jerk. We became friends, and it amused us both as the relatives looked upon us shocked.

    Now the very medically biased survivor group looked frankly scared when I walked into one of their meetings and asked me whether I was there to ‘convert them’ to non-medical thinking. I assured them I wasn’t there to convert them but was a fellow survivor wanting to see their work. They relaxed and accepted me.

    The point is – I learnt a lot from the difference.

  • No, big government isn’t at the core of “left” thinking, actually we have no left now, all parties are right leaning. Survivors don’t do well under capitalism, only being valued by their economic productivity doesn’t suit many mad people well.
    I didn’t appreciate how conservative politics are a part of American activism, and how revered Szasz is. It’s a bit different here, he’s definately referred to by recovery activists who don’t support people using services/taking meds/being in receipt of welfare, but in other areas of activism he is not as highly regarded. I’ll be mindful of those differences.

  • No she did not, she privatised everything and paved the path for banks and corporations to be bailed out and subsidised by the poor. She decimated communities, cosied up to dictators such as Pinochet and supported Aparthied calling Mandela a “terrorist” because of her sons “interest” there.She sold off social housing so that NOW we have a housing crisis, I could go on and on and on but I’m not going to debate my countries political history with you.You can be conservative in your country, that’s your business and I won’t attack you for it but it’s shocking you fail to see how capitalism is a cause of mental distress and poverty. So you don’t see the political causations of distress at all?
    I’m guessing you have full health insurance..

  • I think it’s going to be sometime before we can truly celebrate. Diagnosis being junked is not around the corner, neither is the loss of coercion, we’ve only moved a step forward and governments will not let go of social control that easily even if the battle is won elsewhere. Governments could also easily turn around and say fine, no mental illness, no problem we need not have any services then. Do you imagine they will hand over that money to survivors?! They would happily adopt a sink or swim position because here they are already dismantling the welfare state.
    The real challenge is ensuring distress is recognised and support is there, on our own terms, but all systems are enmeshed with diagnosis, separating them is not an easy task.

    Just as Thatcher’s death didn’t rid our country of right wing bastards

  • There is a survivor speaking at the World survivor meeting happening right now on the social and economic conditions needed for decent survivor advocacy/organisations (comparing Scandinavian countries where people can freely do movement work because their benefits are secure to repressive environments in Georgia and the UK). Wish I was there to listen to her..

  • @theinarticulatepoet
    Yes I could puke at the ‘personal journey’ and your two examples and statement are pertinent.
    In my entire life I have never known as many survivors speak [calmly and privately] of their suicide plans for if they lose their income and housing, both of which are a serious possibility now because of housing/welfare policies. The right to appeal decisions has been effectively removed because of protracted UNPAID mandatory ‘reconsideration periods’ which are never reimbursed, people cannot live on no money for months.
    This is before an appeal which takes 12 months. That period is at the minimum payment and some people cannot access a CAB and there’s no legal aid for appeals.
    I don’t think European and world survivor networks are aware of how bad this situation is in the UK, it’s a bloody holocaust.
    There have been admissions, attempted and actual suicides to date because of loss of, or the potential loss of support, income and housing but not a single national survivor group is speaking of it, and this is just as bad as being forcibly injected. These people have left notes clearly stating this is why they have killed themselves.
    I know people who have stopped going out because of what the relentless right wing media in this country have been doing for the last 3 years now by portraying anyone in receipt of any state support as useless eaters. We have ministers referring to ‘work is the solution’, ‘stock’, ‘stockpile’, ‘parasitic underclass’.
    NSUN was hamstrung from the outset and is far removed from grass roots activism such as saw in SSO, but I cannot say anymore..self preservation.

  • The CBT study is really interesting Ron, but I do think it’s fair to say that generally speaking CBT and it’s variants don’t challenge psychiatry and can be used to suggest ‘preferred’ belief systems/interpretations. I can think of people who would be most creative using CBT, and others who would simply use it to promote the thinking of nice thoughts instead of bad ones. Equally voice dialogue in the wrong hands could be a disaster. There are few approaches which are immune to being used badly, although for myself of those I view as near as ‘fool proof’ as is possible with an intervention, I’d have to say the Maastricht Interview is pretty hard to beat. It’s hard to go wrong with that one, but, I still know it wouldn’t suit everyone, and the experience of it can still be enhanced further by a good interviewer.
    The problem with interventions researched by the NHS is that funders require standard outcome measures such as ‘treatment adherence’, symptom reduction, cessation of certain actions, etc. The outcome measures are more quantitative than qualitative bearing in mind service aims and funding. CBT has been used here politically via IAPT as part of the drive to get people into work, that was it’s main aim, not to help people with their difficulties and in many areas those defined as having psychosis or with history of self-harm are precluded access.

  • Sickness schools lol I like that!

    Yes that’s right, because the recovery model is predicated on acceptance and internalization of a particular way of thinking [whatever it is] this is what makes it potentially as dangerous as a medical model. With the latter it’s clear what that is and there’s no concealing it, but with the former, it is because it can be wrapped around literally any ideology good or bad, medical or social, that makes it harder to challenge.
    Sigh yes, the Trust recovery ‘champions’ and sickness school facilitators believe they are achieving the pinnacle of survivor progress whilst service commissioners must be laughing all the way to their boardroom meetings because they’re getting some of us to do their work.
    Yes, we badly need to unite on a couple of key issues but national groups here are in their own corners and NSUN should have been a coordinating group

  • Thank you @inarticulate poet, I think some of our history has been forgotten [or written out].
    I remember the first event to discuss survivors being paid for their time. Payment is something which is taken for granted now, it’s assumed time is paid for, but back then it was controversial! People contributed in paid, unpaid and freelance capacities, no one cared, whereas now the word ‘activist’ can be turned against you if it’s unpaid. I remember when there were no offices and people met in lounges, no computers, doing mail outs by hand writing out 400 envelopes, dragging a case to a charity offering to frank it, bartering for offices and equipment in return for teaching sessions. I remember the initial involvement of service users in local services where I lived where professionals rolled their eyes and struggled with their language and we didn’t know all the acronyms, making alliances on common ground with people with very different views, and attending conferences where psychiatrists were enraged by our presence. It was hard being deliberately targeted, publicly humiliated and practically stalked at these events, not taking the bait and keeping our cool, crying with a peer afterwards waiting for you at the station. This wouldn’t happen quite like that now, I’m glad of that, but some of us trod that ground for the first time so that it would be easier for others to do so. I remember how much we mentored each other, giving up places to speak for first timers, helping them find their voice, holding their hands [sometimes literally]. I remember ‘mind guarding’, where we would offer support to each other speaking. I remember how great our formal and informal advocacy was. I’m thankful to those who did it before me and angered as how those in powerful positions now don’t appreciate or devalue their contributions because sometimes they came up with the most enduring of statements like Eric Urwin of CAPO [Campaign Against Psychiatric Oppression] who once said, “People are as much consumers of psychiatry as woodlice are of Rentokill”, lovely!

    It’s ironic that taking meds can be viewed as part of recovery to mental health services with a ‘recovery focus’ in their ‘recovery colleges’ where you learn about your ‘illness’ and healthy living, a bit of mindfulness then onto the real business of the day; getting out of services and into work, yet in other quarters not taking medication is viewed as recovery then onto the real business of the day; getting out of services and into work.
    I don’t care what anyone finds helpful whether it’s medical or non-medical or where and how it’s accessed [although my own bias is non-medical], but if the often quoted mantra that survival/recovery is ‘whatever we want it to be’ – which it currently is not – then ALL of us have to stop drawing pictures and let each other draw our own and not rip up the pictures we don’t like [we do it along with governments and services].
    I’ve helped someone to get sectioned [when I wouldn’t want it for myself] because that’s what they wanted.
    I’ve helped people escape a section because that’s what they wanted.

    I believe we must accept a wider range of outcomes in people’s lives irrespective of whether we would want them for ourselves and to work towards all emotional and social support being separated from money and administration, because we can all wish for the DSM/ICD to go away but unless everyone can recover pretty quickly and remain working/housed then it’s pretty difficult because the UK government is removing services and social support from people at an alarming rate, this is a greater concern for many service users than getting sectioned. Our government is separating all support from any notion of distress, so they are trying to rip away what little people have in the name of said distress not being valid or serious enough. That’s not the separation we need, we need the recognition of distress [on very different terms] without having social support removed.
    For many people not in the more protected recovery/mental health work every time they engage with the outside world of work their mental health history beats into them, then others are forced to admit to an ‘illness’ to keep their jobs.
    A friend said, ‘We need a revolution in what survivors need and have a right to expect – humanity, equality, access to decent care and housing’.
    We’ve become too insular in corners of single issues when there really are a few issues which would probably unite the majority, if we wanted to.

  • Sometimes there really isn’t an up side or a better position, it isn’t catastrophizing. Not sure I’d want some of my experiences re-interpreted maybe more validated, which isn’t to say there isn’t a place for putting anything into different and wider perspectives.
    I understand the concept of not fighting everything and accepting things you cannot change, but equally I refuse to accept the unacceptable and sometimes some of us need someone else to call a turd a turd and not a euphemism.

  • Power is not the exclusive preserve of psychiatry, politicians in the UK want to opt out of the EU and Human Rights Act. To date they’ve effectively removed legal aid and the right to appeal negative decisions in welfare and housing.
    If a survivor is forced onto Workfare and the HV group clashes with the hours, Workfare would have to take priority because otherwise it means being sanctioned [which means having no income].

  • ps.
    There are some practitioners in the NHS you really wouldn’t want doing HV movement approaches like voice dialogue, in the wrong hands it wouldn’t be good. We have professionals who say the ‘right’ things but in practise you wouldn’t really want them anywhere near you. Or they talk recovery but baulk at assisting a person with a travel card because apparently you can’t be recovery orientated and benefit from things which require a medical model diagnosis. Yet those same professionals forget every single patient they see has to be Care Clustered with a diagnosis. Those same ‘recovery orientated’ practitioners don’t like their service users speaking of iatrogenic damage or criticizing psychiatry.

    I want a future where we work out a different way of running economies because survivors don’t fare well with capitalism where their only measure of worth is their economic productivity. A future where everyone contributes whatever they can in whatever format they can manage and have a guaranteed livable income and stable housing.

    From there psychiatry would be available alongside everything and anything else from people to choose from but with no forced treatment [but I’m not against short term containment where life is at risk].

    Yes, I know I really am deluded..

  • The ‘old’ survivor movement [viewed as irrelevant these days despite the fact that many of us worked hard for ground people now take for granted] worked to build bridges with professionals as well as doing separatist work and there are a few examples of where this has worked out well, and the early HV movement was ALL about collaboration.
    I can think of professionals who are not on the very hip HV scene and yes even do CBT, they wouldn’t be viewed the same as the superstars, but they are quietly doing something different within the system and doing their best to get it ‘evidence based’, and there are those who write it up as CBT as required but that’s not what they do in the consulting room. Innovation doesn’t just happen within HV conferences. I’ve stated time and time again with it falling on deaf ears about the 2 tier system being played out within the wider survivor movement including the HV movement – the political divide & rule is happening amongst us and it’s about use of services, use of medication [I’ve seen Youtube videos of survivors practically calling their peers stupid for ‘poisoning themselves’], and it’s also about employment and social housing [with vicious attacks on people in receipt of disability or housing benefits], and being ostracised if you refuse to state you’re recovered or ‘in recovery’ if you don’t feel it.

    CBT doesn’t challenge the social and political causes of distress but perversely can attempt to get people to accept the unacceptable, and the ‘recovery model’ within psychiatry in the UK is a joke.
    However, I would also argue that survivor orgs can also neatly side step the social and political causes of distress favouring different versions of recovery which are also prescribed to some degree. CBT doesn’t challenge psychiatry, but survivor orgs are not challenging governments to separate need from diagnosis. Abolition of diagnoses don’t look at how people access social support and live without a required diagnosis [financial/health/social care/housing systems all entwined with having to have a diagnosis]. It’s all very well taking a Szasz social Darwinist approach but not everyone can get a secure home and nice job.

    The HV movement is not yet psychiatry’s biggest threat because it’s been quietly used by mental health Trusts – they refer their patients to HV groups – yes that’s good in itself but – they do this AFTER they’ve medicated, and then people are put into ‘recovery groups’ for a few weeks and then it’s discharge back to GP, and crisis care is another matter. Long admissions are not happening now [except in secure services] but we have more people on CTO’s.
    What I observe is psychiatry using the best bits of the HV movement but it’s still wrapped up in a medical model, they are indeed colonizing it, but equally some of us have been willingly colonized by them in recovery work to promote service and political definitions of recovery.
    Then some of the paid recovery posts within services are a poisoned chalice – survivors do it because it’s often better than the alternatives, but they parrot whatever service commissioners tell them to, whilst others have cringed at what they are expected to teach [or it that preach].

    The PD industry has massively grown here in secondary and secure care, we had a diagnosis in the UK developed by our Home Office, it didn’t even come from psychiatrists, but it helped shape the last review of our Mental Health Act [and not for the better]. We have people deemed to be Schizophrenic left on depot injections to rot with no other support – they are then shoved into these stupid recovery groups for a few weeks and if they fail to recover do you know where they end up?
    In PD groups, because that’s the only area of mental health services which offer longer term support for 1-2 years. Their problems are then reframed as relational. I’ve seen this happen to people who have had a diagnosis of Schizophrenia for many years, being redefined as PD to fit the services left on offer.

    I believe PD is as much the diagnostic and political frontline of diagnosis as Schizophrenia. Ok all the genetic rubbish isn’t hinged on it as with Schizophrenia or psychosis [the HV movement routinely refers to psychosis], and I understand the biological backbone of psychiatry has always been psychosis, but PD could be said to be the psychological backbone of it. That’s much harder to disprove.
    In terms of human rights abuses, people diagnosed as PD in secure services and in the community from my observation get the worst of everything. They are vilified and rejected or hammered. They are given antipsychotics the same as for psychosis, and the worst of behavioural regimes, and the worst of blaming attitudes, and their life trauma’s [and childhood abuse] dismissed as their personal failure to cope with it. They get the worst of all worlds. I never envisaged feeling this passionate about this area but what I’ve witnessed over the years has led me to believe that PD is as bad or worse than Schizophrenia as a diagnosis and more dangerous in how it’s being wielded.
    It’s just terrible to witness how friends are treated in A&E for serious self-harm if they have a PD diagnosis, their lives are viewed as pointless. I almost feel guilty for receiving better treatment than them [and I haven’t had it easy] simply because I don’t have their diagnosis. Then what saddens me further is to hear of a survivor group member referring to someone’s suicide as “letting us down”. We really have to get our own house in order..

    Making sense of voices really matters but as been discussed elsewhere, everything is far from rosy in the recovery business both within the survivor movement and outside of it, we can’t be complacent because as a survivor [and voice hearer] I don’t feel welcome anywhere because my survival was declared substandard because I failed to produce a ‘recovery story’, so frankly I feel as fucked over by my peers as I do by psychiatry.

  • UK services do employ more survivors to do ‘recovery’ work in ‘recovery colleges’ which is just wrapped around a medical model and they don’t see how they are being used.

  • Also what is with all this ‘dependency’?
    Services discharge people by the thousands because of cuts to services, but staff will say it’s to prevent ‘dependency’. Everything is short term now, and where support does work often users appreciate fairly low levels of support. Now it’s revolving door by another method – hit the deck – get some response and then out asap, then only go back if in crisis.
    I know people who have used services for 40 years, I wouldn’t view them as dependent, anymore than I would view a diabetic patient of 40 years as dependent, or my own physical condition which requires lifelong checks. So long term physical health support is ok, but in mental health it’s ‘dependency’ [putting aside how useful they are].
    We ALL depend on other people, few of us are islands. ‘Dependency’ is not the exclusive preserve of a medical model of care.

  • Me neither Dorothy, but I’m also living with [not recovering from] what led me to psychiatry, but now I’m in a war I never envisaged – the war against those who are not economically productive enough which has just as much power to kill as psychiatry, and survivors are not supporting each other.

  • Sometimes people [who won’t toe the party line or promote survivors thinking] are forced to accept a mental illness diagnosis in the workplace in order to keep their jobs. The problem of diagnosis being entwined with our ability to survive is wider than welfare/housing/social care issues, and all the campaigns to abolish diagnosis are not looking at this

  • I did go to survivor meetings in the 90s and learned a lot from them. Maybe we were not at the same meetings!

    No we weren’t [not a criticism].

    I do appreciate your scepticism of a corporate approach to recovery and share your concerns about its potential to exclude and suppress.

    You’re not a part of it?

    I think we should see healing less as the sole responsibility of the individual, I am more interested in giving the responsibility as much if not more to the community around the person.

    That could be taken in different ways Rufus..how many times have I heard the ‘responsibility’ line from Szaszian social Darwinists [sink or swim], to hard line recoverists [no meds, no services, must be employed], through to medical modelists [accept your biochemical imbalance] – each saying it is ‘your responsibility’. We can tell people it’s ‘their responsibility’ wrapped around any ideology.
    When people are up against punitive housing/welfare systems which make it difficult to live, where they have no control over that process other than attempting to contort themselves into ever decreasing circles of ‘eligibility’, how much control do you think they have?
    Ditto people in High Secure services having to look and sound “normal” enough for years to earn discharge. Ditto people in the community not able to access much of use to them.
    As for community recovery, how is that possible within the current political climate? Rising levels of disability hate crimes, a very damning view of [non-celebrity] mental health, I know users/ex-users who [if they receive any kind of state support] have stopped going out because they fear their communities even seeing them walking, to be viewed as ‘fraudulent’, they fear that more than getting sectioned. Diagnosis is the raspberry sauce of all our financial, administrative, health & social care, welfare/social housing structures, and no survivor group appears to be doing political campaigning regarding social justice [with no legal aid/dwindling CAB’s, sanctions and conditions which mean people being left with no money for months or being forced into Workfare].
    No one in mental health is looking at that. The community is hostile outside of nice groups and protected recovery work.

    The only ‘responsibilities’ being given to service users now is that they must recover and get employed asap, but the middle bit of how and what is left out. Voluntary work is no longer an accepted outcome for example. For people who can’t access alternative places/groups [and don’t have a computer] they are stuck with the NHS which invariably means PbR’s “evidence based” variants of time limited CBT and meds and nothing else. Responsibility is a fine thing if you have some control over what you can access and perhaps more importantly – what is socially and politically acceptable to achieve.

  • Thank you for quoting my words Rufus about the hearing voices movement having been beautiful, but like anything it’s not perfect and should still be open to debate and criticism rather than clever words and defence, and the reason you hear this rather than a tsunami of praise is because too much debate about some fundamental things for survivors has been airbrushed out and deleted.
    You were not around in groups which did just that, argued the toss and respected difference and never directly or indirectly wrote people off. It kept leaders of that time with their feet on the ground. Not perfect, not by a long stretch but the difference was the difficult stuff wasn’t ignored, it was directly engaged with. The subtext of much around now about ‘taking responsibility’ [as though no one has till now?], and ‘deciding’ one afternoon to not be an XYZ is not encouraging. Survivors self-managed and acted as role models to other before the rise of recovery and being ‘in recovery’ is not the only hope we can offer each other. Those you won’t see at conferences might also like to know that there are others like them, maybe getting by or hanging on, not recovered, maybe not attaining the life ‘milestones’ typically held up as recovery. Knowledge of endurance and different types of lives are also helpful.

  • I’d agree with that inarticulatepoet [actually I think you’re very articulate!].
    Truth, a bit like recovery is malleable..
    All the stories are ‘recovery stories’, the terrible ‘before’ and fantastic ‘after’ and there is overt hostility to those who don’t go with it with sneers of personal failure, laziness and assumptions of being a medical model apologist. This is being reflected everywhere not only the hearing voices movement, but if it were a ‘social movement’ then it would look at the reality that it’s not yet a complete alternative to state mental health services and housing/financial/health/social care is entwined with a medical model. If diagnosis is junked [which would be great] how do we ensure people get the flexibility and support they need socially because that all requires a psychiatric diagnosis [or ability to adhere to set aims], not everyone can get jobs in the recovery business [or wants to]. The Szasz sink or swim attitude [like our government] is all very well but I see people hitting the deck because they can’t recover quickly enough and are losing all their support. This is a problem survivor groups don’t want to look at, it almost seems like an embarrassment to them. I remember listening to a survivor privately telling me that they did not feel recovered and didn’t really go along with everything said in these respects, but this person couldn’t say it publicly. It wasn’t the first time I’d heard that, people privately and publicly saying two different things, and you have ask why is that?
    Hearing voices isn’t always a great experience and where is the space for those stories, for those who don’t have a recovery narrative or not one which would be recognised by today’s high standards of recovery?

  • It’s good to see possible re-traumatising role of services in that list because it’s something services miss or don’t wish to discuss because that “wasn’t them”.
    Iatrogenic damage needs to be recognised because it leaves significant problems.
    With social causal factors that also needs to be looked at the other way around too because some studies have shown certain types of work/pay/streams of temporary contracts to be worse than unemployment. The Recovery Star gives less points to voluntary work than paid work for example, and there’s no formal recognition of some people needing to remain doing voluntary work, that’s a complete no-no in the recovery age and touches on current political ideology that people are only worth their economic productivity so service users who have made decent progress [typically with survivor help] are now hitting the deck because support is being cut off along with being knee deep in welfare/housing problems.
    Then how do we separate diagnosis from social support because one depends on the other? I know people are not supposed to need it for very long and become recovered but in the real world everyone doesn’t fit that picture.

  • Thankyou Inarticulatepoet for the link.
    I guess what also disturbs me is that activists including leaders [not here] can be almost chastised for ‘selling out’ if they do take medication [ongoing or ad hoc during difficult periods]. I’d be the first to say how awful the drugs are, would happily see depot injections banned, and for no forced treatment, but, I also will not have a downer on anyone who does use it because we each have to do whatever we need. I’m thinking of an interview sometime ago [American activist], and also of another whose work I have always admired [I won’t say her name because I must respect her privacy], but again an American activist who told me about how difficult she finds it with her peers because she’s on welfare. I thought to myself how sad that they must feel so judged.

  • I’m definitely in favour of formulation as I’ve always wanted to be able to explain mental distress/madness in plain English because there’s nothing which cannot be described in ordinary language of a person’s choosing, so it might mean a whole sentence or paragraph instead of a single word to describe a person’s distress, that’s great by my reckoning. Anything which moves away from any model which reduces [and that’s not only the medical model].
    The big problem of course is that diagnosis is entwined with all health and social care financial and administrative systems, so the separation of these whilst ensuring those who need housing, income, personal support get it, from getting it without a clinical diagnosis is going to be the major problem politically.

  • Lynne is magnificent and the blog by Sera here on recovery is also really good because it touches on issues which survivor movements as a whole are not looking at and are quite divided on.
    Yes the hearing voices movement has [rightly] highlighted child sexual abuse, although some of us have experienced attempts to ‘persuade’ us that voice hearing must have stemmed from an abusive childhood which is a bit alarming when that is not your experience, and other areas such as the ones you list are less acknowledged. Nor is the reality that people might have ongoing difficulties and be unable to fit traditional working patterns and the stringent procedures and conditions attached to any state support cannot be accessed without a diagnosis. This is turn places housing at risk of which there is a national shortage of affordable social housing in the UK. This impacts on people receiving in-work and out of work benefits.
    Better non-medical approaches don’t count for much if you don’t have a roof over your head and can’t eat. People are ending up back in hospital or worse because they can’t fight both psychiatry and punishing welfare/housing policies at the same time.

  • Great article Sera! [please see my response to the hearing voices article which I read before your article]

    What a relief to read something which speaks something of what I feel because recovery starts to feel like Invasion of the Body Snatchers

    Recovery in the UK has become a stick with which to beat people with.
    Political recovery = get any job under any conditions [preferably with no tax credits]
    Mental health services recovery = discharge asap
    Survivor groups/critical thinking allies/charities recovery = what you got no recovery story?!

    David you make good points that part of the problem [which feels like it’s the dirty washing of survivor movements these days], is that in order to access any social supports such as travel cards/housing/income [be that in-work, or out of work short or long term] requires a diagnosis. Years ago no one gave a toss about whether campaigning contributions were paid/unpaid, whether people used services or not, it just didn’t matter but it does now. If you criticise recovery as a concept and how it’s used [by anyone] you can be accused of being too lazy to recover or asked about your employment status i.e. are you one of those scroungers on ‘welfare’ [the UK has adopted the same system as the US with Atos assessments which are incredibly hard for anyone to negotiate, and ‘Workfare’].
    What is needed is a welfare system which is flexible, which allows people to hop on/off doing as much paid work as they can and be guaranteed a living income the rest of the time. Some people will never fit traditional working patterns, and now part-time work [typically requiring some top ups of tax credits/housing benefits] has become conditional so that part-timers will be hassled to get more hours or higher pay, of face Workfare for the remaining hours they are not working.
    So it’s a big leap for people into employment because now, it means you have to be able to work full-time and not everyone can do that.
    Some people fare better doing voluntary work of their choosing, but that’s no longer acceptable. Political systems need to change because survivors don’t fare well with capitalism which only values economic productivity. It’s painful to see people force themselves repeatedly into work and hitting the deck repeatedly all to prove they are working hard enough in their recovery and to avoid the stigma of receiving benefits.
    The new system is already seeing increased suicides, admissions, evictions/homelessness, take it away completely, they would all go up dramatically.

    This is the one area I don’t see survivor groups addressing at all. Thank you for even being prepared to talk about it [I have felt so alone].

    We have great physical disability activists here who wrote The Spartacus Report, there needs to be a mental health equivalent to put forward a different way of doing things so that people CAN contribute in whatever means they can and live as well as they can but are not forced into positions they cannot do.

    We have rising levels of distress because our country has become more unequal and punishing and over the last 3 years sick/disabled/unemployed/the working poor have been utterly vilified in the media as being scrounging criminal rubbish, referred to as ‘stock’ and ‘stock pile’, with ‘work as the solution’ despite there being high levels of unemployment and employers not wanting to take on people with psych history other than low paid temporary contracts and doing this going on/off benefits means certain debt because it takes weeks and weeks for anything to start being paid. It’s been shown that continuous low paid temporary jobs interspersed with benefits is worse than being unemployed. There’s so little in-work support so it’s really annoying when high profile survivors speak of ‘graded returns’, ‘working from home’, ‘reasonable adjustments’ when that doesn’t apply to shelf stacking [and that’s as high as the bar goes for formal employment support].
    We have Atos, Workfare [mental health users are especially vulnerable to this], low wages which have to be supplemented with tax credits/housing benefits because corporations refuse to pay living wages, and some employers really harass employees when they are sick i.e. ringing them every day [that’s common in retail].
    Political divide and rule has impacted on unemployed/sick/disabled where people feel pitted against each other [our political masters want this of course].

    Many people feel that they can’t be who they really are because one way or another it’s not going to be good enough unless it’s full-time employment and not needing any support. I listen to many now afraid to go out and be part of their local communities if they are not employed, some even frightened to do their voluntary work because this invalidates state support or make them a target from people who believe voluntary work is not good enough. There is open hostility.

    Recovery is not an individual process it is often prescribed.

    I know some activists I admire who would never have written the publications they have unless it had been done so voluntarily and with state support. They don’t view themselves as victims, they simply cannot produce work under pressure.

    Belinda, the 8 hrs of voluntary work and exemption scenario you describe sounds like a good safety net to me, but it does seem that no one’s allowed to genuinely have ongoing difficulties [however you frame it] without it being called a sick role/lazy/failure. Survivor networks don’t want to face this since recovery became in vogue.

    Recovery means nothing to me as a concept, and I come from a self-management background but I do not relate to what is said and done in the name of recovery because some of it is profoundly damaging. I would never refer to myself as recovered/in recovery, but that’s doesn’t mean I view myself as a sick victim.

    I am ‘anti’ prescribed recovery and people being berated, ostracised and ignored for failing to say they worship recovery with their recovery story.
    I want people to do and be whatever they need and for all of us to value each other wherever we are on that spectrum.

  • The hearing voices movement has been beautiful but it also has it’s failings – for some of us it feels like your voice only matters if your recovery is good enough, if it isn’t then you find yourself tossed aside and that is as bad as what the medical model does, and there have been models of sorts promoted within the hearing movement regarding causation and recovery. Human rights also includes social justice and there isn’t a single survivor group campaigning on those issues in the UK because forced treatment and medication are always the cool topics but housing, benefits and access to services [despite them not being that good but the vol/survivor sector really can’t cover it all yet] are clearly the embarrassing subjects. Fact is these issues are posing a serious threat to people’s lives right now, and secure housing/income has to be the foundation before you can look at how you want to manage your voices.
    Too often [and this isn’t only the preserve of hearing voices activism] there are demands for ‘recovery stories’ irrespective of whether people even relate to that concept which doesn’t in itself mean not believing in self-management. The most marginalised are left behind, and radical movements need to recognise where it too can be abusive too i.e. being threatened for your views, being denigrated for ‘failing’ to not cope better. The testimonies of endurance and struggle are swept under the carpet in the era of happy shiny recovery and criticism swiftly deleted.
    There’s a lot online berating of others who take any service support, medication, are in receipt of any benefits, all in the name of recovery and getting away from psychiatry and it’s not acceptable that any critique is met with sneers of accusations of being ‘medical model’ and assumptions of being too lazy to work. I want to see the fall of the DSM, I want to see psychiatry become a very small cog in a much broader wheel, where non-medical support of a person’s choosing is accessed easily something those survivors you refer to [as though that word is a relic] tried to fight very hard for. We also didn’t stifle debate and criticism of ourselves and our actions and we reached out to people whose views were different to ours.
    There are people on monthly depot injections being pushed into ‘recovery groups’ by statutory services where it’s all life coach speak and then they leave to nothing. They are not the people you would see in a hearing voices group. You don’t represent them.
    Prof Nik Rose once referred to the ‘obligation’ to recover and Lynne Friedli has eloquently spoken about how unpoliticised this whole area is.
    http://www.researchintorecovery.com/content/lynne-friedli
    Lynne is the only survivor whose words on recovery I can take seriously.
    Services have employed ‘recovery champions’ who ‘correct’ service users language talking the service commissioners talk, the NHS has bastardised concepts of recovery it’s merely wrapped around a medical model and dove tails with discharge and employment as the key outcome measures of it. Equally, there are valid criticisms to be levied at survivors too who have turned recovery into neo-liberal activism where you’re either for it or against ‘em, and if the latter you are the enemy.
    In an ideal world no one would end up in the mental health system to start off with but we’re not at that point yet, and part of the problem is capitalism which only values economic productivity as the value of a human being and because ALL social supports require a diagnosis. So unless you can get through crises or longer term difficulties [I know they’re not supposed to exist but they do] without needing any assistance with housing, income, time off work, then it’s incredibly difficult to get around those things without contact with a doctor unless you win the lottery.
    One can feel anger at mental health systems who destroy lives and be justifiably concerned at some aspects of survivor activism too, it’s not either/or. I remember having a conversation with the late Judi Chamberlain about these issues, it’s not specific to the UK. There’s a great report by Canadian survivors called Mental Health “Recovery”: Users and Refusers.
    I’ve listened to fellow voice hearers distress at feeling like they must be failures because they haven’t managed to reach the point of their voices no longer bother them, or do higher education, or get a job/back into employment, or other expected life milestones. Are they welcome? They don’t feel it.