Tuesday, March 21, 2023

Comments by Joanna Care

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  • “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.


    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.

  • 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;

    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

    Mental Patients Union formed

    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?
    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:

    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.


    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.


  • 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”

    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.