Showing 35 of 35 comments.
Yes, exactly! That’s what it meant originally, that’s the whole point.
Great article Sera. Hope it helps. FWIW, 2 kinds of peer support::
#1. People with lived experience support each other to achieve self-determined lives of their choosing.
#2. Providers purchase lived experience to support compliance, endorse products and increase market share.
#2. (Urban slang) Thugs who don’t give a shit use folks who don’t know shit to sell bad shit without paying shit.
Here, here, BPDTransformation – great comments ! Well-said!
Great points Frank! Yes, really agree that we should get out of the ‘problem people industries.’ Do think that our society could benefit greatly from offering a safety net – especially economic, but also social in terms of the kind of human support where people listen to each other deeply and have no other agenda than supporting someone to make sense of their experience in a way that fits for them. My experience has been that the lack of either of those greatly raised the stakes for me and for my relationships with others as well.
Really appreciate you reading the article and sharing your experience Chris. It’s the only way to make sense of these issues with integrity and transparency I think. Was wondering re: the times when money became an issue or re: the Washington Post stuff, whether any of that might have feel like it fit the description of the ‘high stakes’ response or not…?
Thanks Cat! Really important point you make – both here and below. Grateful for you calling it like it is, your tips on how to stand up for yourself on the inside and your willingness to fight back against abuse instead of go along to get along.
Argggghhhh!!!! Truly cosmic-scream-worthy!
Hi Someone Else – The outrages seem to have no end. Thanks so much for weighing in here. Really glad you eventually got some justice. Especially like your comment about the docs being medically unnecessary. There’s a new take on irrelevance-based practice.
Hi Kim – thanks so much for sharing your story here. Truly outrageous! So points to the widespread abuses of power. You may already be working with Tina to report this kind of stuff to the UN, but if not there probably is a channel, as I think Australia is a CRPD signatory.
Boans – re: Australia not living up to its commitment under the CRPD – that so sucks! Tina Minkowitz might have ideas if you haven’t already been in touch with her. Also, interesting wondering about 3rd world countries that I haven’t heard before. Good point!
You make so many great points Frank – Points to the need for there to be many voices to really flesh out these issues and how to best advance our concerns. Especially like your points that the no treatment is a perfectly respectable (in fact evidence-based if you read Whitaker) option, as well as the idea that alternatives would not be alternatives if there were no force.
Hi bcharris – I’d actually like to largely get rid of jails and institutions – or at least radically transform how we see them and what we do that. It turns out that not only 90% of mental health clients are trauma survivors, but also 90% of substance users, ‘so-called ‘criminals’ and folks wi housing issues. It seems to me that these are social justice issues that require radical reform, including care and attention to human needs and quality of living all around
Thank you BDPTransformation – really agree re: the sensitivity & awareness of not being valued as worthy of respect and participation in the human community. Appreciate you for getting how important this is!
Hi Kate – I guess I need to speak from my experiences about our interactions on this blog. I experience your comments as dismissive, hurtful and unwilling to listen. The way you are interacting with me – and the way I experience you are interacting with others who are trying to share their actual lived experiences here – are literally the kind of interactions that made me ill. I can’t imagine what it must be like for your daughter to try to recover and have someone who treats her experience like you are treating ours so close to her. That being said, I won’t speak for her, but I will speak from what I know about myself of my own experience with the kinds of interactions we are having here:
If my family had treated my truth and my experiences the way you are treating me and others on this blog, one of 2 things would have happened:
1. I would have listened to them out of a desperate need for their love and acceptance and become a permanent part of the mental illness system. Given the statistics, by now I would be living in a group home or institution and facing the serious health consequences of long-term, heavy duty neuroleptic use (if I were not already dead from this); or
2. I would have shut them out and ceased contact in order to recover and preserve my own sanity. They would no longer be a part of my life and I would no longer be a part of theirs.
On the other hand, there is a way that I am grateful for your particpation in this blog. I have long been confused as to why so many of the survivors I know literally hate NAMI, TAC and the families who belong to them. I know many sincere, caring and helpful family members, so it was hard for me to understand why others I know in the survivor movement literally believe that these groups – and the people in them – represent evil incarnate. However, if I project my experience of interacting with you here – including the way I experience the truth of my life that I have worked so hard to express here in a clear, comprehensible fashion – as being dissected, dismissed, avoided, disregarded, tossed aside and even turned against me – and then project living with the relational effects of that long-term – I now feel like I get a glimpse of where those strong feelings come from in my friends.
At the same time, in my heart of hearts, this is not my view. I actually believe that all experiences – and even ones that at first blush appear confusing, extreme or ill-intended – come from an essentially good human core. I see them as part and parcel of the difficult choices that vulnerable human beings with limited options see themselves as needing to make in order to survive. Once a certain level of safety is established for all concerned, however, these same experiences can simply become grist for the mill – something that people of conscience and good will can use to make sense of our humanity. In a word, we can turn the ‘evil’ to ‘good’ and use our honest differences and misunderstandings to grapple with the challenging contradictions of being human on deeper and more nuanced levels.
For my part, I’m more than happy to attempt to do that here if I get the sense from you that there is sincere interest and that a sincere effort will be made to understand life experiences that are different from your own.
On the other hand, if I don’t get that sense from you, I’ll do what I would need to do with anyone who I experience as toxic to my psyche and not interested in changing that: I’ll refuse to acknowledge or engage with your comments and, instead invest my energy in efforts I find more productive – Like the hard work of creating relationships worth having and a world worth living in.
Hi Kate – I’m guessing you care a lot about these issues – and for good reason – or you wouldn’t be posting so much here. At the same time, I remain really curious about who are you speaking for. Are you saying that you, personally, can’t recover and believe that you will need psychiatrists and meds for the rest of your life?
If so, I’d highly recommend that you read the work of Robert Whitaker, who’s work inspired this blog. I’d also recommend that you read the reports of the British Psychological Society that call much of what you are saying into question. I’d also recommend that you look into the Open Dialogue Approach from Lapland Finland and the Hearing Voices approach, which is now international. All of those resources would suggest that you have much to hope for. So would the numerous consumer-developed approaches that are listed in this resource: http://right2bu.blogspot.com/2015/11/federal-minimum-standards-for-community.html
If, on the other hand, you are writing on behalf of someone you love, then I’d still recommend that you read these works. The important thing is NOT to give up hope. So many of us who were written off as hopeless by the medical model have been able to recover lives of meaning and value to ourselves, families and communities. Moreover, for some of us, that kind of recovery was able to happen even though we had experienced decades of non-success with conventional treatments.
Equally important, for a lot of us, that hope – as well as our awareness that there were new possibilities to try – came from people around us who continued to believe in us and look for answers long after we had given up ourselves for dead. Often they did this despite the current system insisting that there was nothing – absolutely nothing (besides what the medical model was offering) — that could be done for us. In effect, these professional ‘helpers’ told our loved ones to write us off and get on with life.
A deep thanks and a very low bow to all of those courageous family members and friends who flat out refused. You continued to believe in us and hope against the odds. You continued to stand up to a broken system that called you naive, foolish or even crazy for daring to think otherwise.
Want to talk more about what is possible – as well why it’s both believable and achievable by many, many people who currently are falling through – not the cracks – but the gaping holes that are not even close to being address by the medical model system? Call me – 802-279-3876.
Hi Kate – Curious about your comments. Can you please clarify? Are you speaking as a person with lived experience who has had access to these kinds of resources during a time of personal distress and found that they did not help? Are you someone who personally found drugs, seclusion, restraint, segregation and incarceration to be a really helpful and productive part of your personal healing process? Are you someone who has personally escaped the health and social complications (diabetes, obesity, congestive heart failure, inability to work and function) after experiencing full-on the ‘best’ the medical model has to offer? If not, it would be great to hear here from all those folks you say that you personally know of who are currently begging for the medical model, only the medical model, and more of the medical model after first having been provided those simple necessities of live that so many of us who have been there can say from actual experience would have helped a lot more. Ironically, you seem to accuse us of wanting ‘welfare’ and ‘handouts’ in our hour of greatest need. That would be a fair criticism if it were not for the ‘welfare’ and ‘handouts’ that are being paid daily by workers and taxpayers to support a for-profit pharmaceutical and healthcare monopoly that people in distress (or their families) have actually PRE-PAID for by insurance / tax dollars – but yet offers them – in their darkest hours – little of what they actually want, need or find useful. Indeed, what is offered in the guise of healthcare has so little utility to most actual end users that these ‘services’ could never survive – dollar for dollar – in a truly free market where people were given equivalent amounts of money to what we are already spending, ALONG WITH the freedom to choose how to spend it in order to create the most health and wellbeing for own needs. The research that has been done suggests that offering people this option (‘self-directed care’) gets better outcomes and is just as cost-effective. But for the stranglehold of big business interests -effectively corporate welfare – this latter system would be a no-brainer.
Dear Tired Mother – So sorry for what you and your family have endured. Thanks for the time, effort and energy you so clearly have put into trying to find a better way. Really appreciate you reading this piece and trying to understand the perspectives of those of us who have a strong bias against the current system. Like many of us, I have a lot of opinions about how I would like to change things if someone gave me a magic wand. My basic analysis of what is/ has gone wrong is stated in the following blog, http://right2bu.blogspot.com/ A couple pieces you may find most useful to start with are
1. Federal Minimum Standards for Community Development, http://right2bu.blogspot.com/2015/11/federal-minimum-standards-for-community.html
2. The ‘Helping Families in Mental Health Crisis Act’ Doesn’t (still a draft in progress but with some useful points to consider), http://right2bu.blogspot.com/2015/11/the-helping-families-in-mental-health.html
3. Recovering Humanity in Mental Health Policy, http://right2bu.blogspot.com/2015/10/recovering-humanity-in-mental-in-mental.html
4. Human Rights ARE Mental Health, http://right2bu.blogspot.com/2015/10/human-rights-are-mental-health.html
5. An essay on trauma and the need for trauma-informed appoarches, http://right2bu.blogspot.com/2015/09/reason-2-to-grow-beyond-medical-mindset.html
6. An essay on the Unaffordable Opportunity Costs of Our Current Treatment As Usual System, http://right2bu.blogspot.com/2015/09/reason-conscience-and-treatment-as-usual.html
Also happy to talk more by phone – 802-279-3876. I made my own mother extremely tired and miserable too — for years — but we have a pretty great relationship now. We both kept trying despite our frustrations and differences. Over time, and a lot of suffering, we managed to find ways to appreciate and value what each other has been trying to say and offer. At this point, there is a lot of affection and mutual respect. For me – and probably both of us – that makes all the difference in the world.
Hi bpdtransformation – thanks for your comments! We’re beginning to create something along the lines of what you mention here: http://right2bu.blogspot.com/ So far it’s mostly just me writing. For the groups -On line: I know of about 30 groups on Facebook, and find more each day. I’m guessing the same is true of Google Plus, though that’s new to me. There’s also a lot at Icarus Project. We’re also starting some online – Virtual Alternatives – eDrop In, e Respite – which you can find more about here. http://right2bu.blogspot.com/2015/11/virtual-drop-in-crisis-respite-weekly.html
Face to face, almost every state has at least one state level peer organization – the vast majority of which were formed to expand options beyond the medical model. Within States, the are usually several local organizations and/or support groups, founded for the same reason. These include groups for Hearing Voices, Intentional Peer Support, Icarus Project, WRAP, Alternatives to Suicide, MindFreedom as well as numerous generic support groups that affiliated with any major ‘alternative’ philosophy but contain people who are looking for alternatives none the same. You can get a picture of the overall richness and wealth of the peer initiated counter-voice to the medical model -as well as how to access the resources that do exist – here:
Internationally, there are groups like World Network of Users and Survivors of Psychiatry and Intervoice, as well as numerous local, regional and national groups in nations around the world (WRAP, Icarus & IPS are also internationally known and practiced in group formats).
Yes, agreed Julie – you make good points, here. I was hoping it would come across as more of a dance than a jarring departure. But for sure, I wanted to address both audiences. For me the difference is not so much about survivors and non-survivors though. I see us in both groups. For me the relevant distinction is between those of us who find ourselves unable to ‘pass’ for whatever reason and those who are able – for whatever reason – to hold or regain social roles that offer access to social voice – and therefore the power to make a difference.
Thanks Eric – Love how you are thinking and writing about this topic. Grateful for your commitment and action to make a difference.
Thank you! I think he’s read the Icarus Harm Reduction Guide – but am guessing he’ll welcome learning about the survivingantidepressants page.
Yesss!! Thank you The_cat.
Cat and others – Thank you so much for raising my consciousness on this important issue. I’ll talk with the editors of MIA & see if there is a way to change that language to something less offensive to the arms-bearing survivor community .
What you are helping me see is that psychiatric survivors and 2nd amendment activists have a tremendous amount in common. To be sure, I’m scared of the power of weapons. But in reality, I don’t trust the government to bear arms any more than I do private citizens. Moreover, I don’t think the solution is gun control. I think the solution is a government and communities that respect and advance the human rights of all. Until we have that, I have to agree with your analysis that citizens being able to bear arms on an equal basis is a great leveler.
A really great question is how – instead of fighting each other – we can raise consciousness between the firearms and psych survivor advocates and support both movements to ‘get’ each other better and ally around our shared interest in reducing the tendency of those acting under color of law to abuse their power.
To add a bit of context: the comment I made about ‘gun control’ was inspired by an article by Larry Drain in Hopeworks Community, https://hopeworkscommunity.wordpress.com/2015/09/09/murphy-2/. In that article, Larry reported that, according to his political connections, politicians have been under tremendous pressure to at least appear to something about rising violence – and in particular about the kind of public violence that can result when people have access to firearms. Per Larry’s report, instead of addressing that question directly – and thinking strategically about what is leading to firearms violence and what is needed to effectively reduce – politicians instead decided to attack the rights of ‘the mentally ill’ in order to give the appearance of taking action. I wanted people to be able to make the connection that Murphy started out as a political diversion. But, I agree – and can now see in retrospect – that I should have used different language to do that.
To take this issue even a bit further – and perhaps further support the connection between the two communities of firearms and survivor advocates: My personal belief is the cause of public firearms violence is not ‘mental illness’ but prolonged, entrenched social exclusion and othering. I thus see public firearms violence as a wake up call – to the public. This wake up call is intended by those who become violence as something in the nature of political speech about important social issues that are in desperate need of public attention and meaningful change.
Their essential story is this: People who have been othered and treated as outsiders for years, reach a breaking point. They are routinely and matter-of-factly treated like dirt by the communities and social circles where they live. This has been going on so long – and is so much a part of their everyday lives – that they have lost all hope of ever meaningfully participating in the human community. This is true for those in multiple socially labeled groups (‘mentally ill’, homeless, ‘addicts’, ‘offenders’, ‘truants’, ‘welfare’) but also for many who escape the labels and pass under the radar for years.
Many of us have experienced these kinds of social dynamics at one point in our lives or another – and know what it is like. It is deeply traumatizing and something that no human heart or mind can bear for a sustained period.
Our natural response to this kind of social trauma is deeply impacted by human biological response to threat of fight, flight, or freeze. That means some of us avoid or hide the pain from ourselves (e.g., addiction, ‘psychosis’). Others freeze (become immobile, paralized unable to act). But some of us, predictably, will rise up and fight. That means we attack the threat as we see it and try to take it down. Ergo, Sandy Hook et al.
Moreover, if you believe in and understand the biological fight fligh freeze response, you can guarantee this is going to happen – and keep happening – for as long as we continue to ‘other’ people and treat social ‘others’ badly. That’s because the fight response itself is, on the whole, socially adaptive and good for our species. (Nothing that is wrong would ever change in social circles if there were only flighters and freezers. There would be no objection from these responses – so the social status quo would always previal.)
Suffice it to say, imo, public violence is not essentially an issue of gun control. It is an issue of discrimination, othering and social violence directed at people who are different.
Moreover, as an American public, we are currently reaping – if not what we deserve – at least the logical consequences of how we have been treating people.
There is a silver lining in this cloud however. The silver lining is this: Social violence is entirely within our power to change. Moreover, citizens and communities can do this totally without firearms legislation – and in fact without legislation of any kind.
We simply need to start treating people differently. That means we need to stop ignoring that fact that far too many people are being left out. We need to pay attention, look around us and see who looks most isolated or cut off. From there, we need to take active steps to reach out, get to know the people, offer meaningful conversation and real relationship. We need to actively support people to get meaningfully connected – and to recover the rights and resources that every human being needs in order to live and be well. In a word, we need to support our society to recovery its humanity – and each other to recover our human rights.
Thanks for the great article Lauren! People thought tobacco was big, but we ain’t seen nuttin yet! Tobacco ‘only’ sold cancer to willing consumers. In the last few decades, Pharma and psychiatry have managed to quadruple the disability rates and take 25 years off the lives of desperate people in distress. They’re currently laughing all the way to the bank with the American public paying the tab. They’ve managed to do this despite the fact that independent longevity studies give your average person with ‘severe and persistent mental illness’ a 700% higher chance of recovering if they refuse or escape the treatment offered them. I can’t wait til the NAMI Mom’s finally catch on to the fact that they’ve been duped into poisoning their families so some fat corporate cat can buy another yacht. My best guess is that the force of that fury will make Hiroshima seem mild.
El – Thank you so incredibly much for sharing your story here! Yes, our cruelty to each other is indeed insane – not just inhumane. The sad reality is that it perpetuates the trauma so many of us are grappling with. Both government and insurance industry research suggest that upwards of 90 percent of us in public mental health, substance use, criminal justice and hard to house settings are survivors of interpersonal violence and / or extreme deprivations of human rights. The provider industry has recognized these studies and called for a nationwide behavioral health response. National Council Magazine (2011:2): Breaking the Silence: Trauma-Informed Behavioral Healthcare), http://www.integration.samhsa.gov/clinical-practice/NC_Mag_Trauma_Web-Email.pdf. Yet, the provider system, as a whole, remains basically unchallenged and unchanged.
This, truly, is nothing short of collective ‘madness.’ If trauma, inhumanity and deprivations of basic human rights got us dysfunctional by conventional standards, how on earth will more trauma, inhumanity and indifference to human rights make us function any better?
Fred – these are such wonderful quotes! Thank you for sharing.
Thanks for loving “Madass” – and thank for your outrage!
This is so great Steve, “I agree with Ted – it starts with working to be the way we need others to be when we’re with each other. Love is not owned by a profession!”
Plus, also really want to highlight what you said here:
“What helps people heal is first off getting real with them and stepping out of any power advantage and helping them connect with the idea that their suffering is OK and human and that you accept it and them as they are. There are lots of different tricks and techniques and approaches but none of them are worth crap without the human connection, and once you have that connection, the person seeking help is almost always able to generate a raft of his/her own “tricks” that you might never have thought of.”
The only code I didn’t break was dating a client. A lot of reporting got left undone, former clients became friends, lived with me, I lent (gave) money, paid bills, visited people at home, helped people move, drove them to work, went to groups together, played bingo, buried a pet, went for coffee, went to weddings, medical appointments, foodbanks, social services, contacted people my clients wanted called even if I couldn’t get a written release right then (and sometime forgot to get it later), shared my own struggles when they seemed relevant, everybody had my home number (almost no one called it). I also made a ton of mistakes (still too embarrassed to share some of those!) – and a ton of apologies — which to a person were graciously accepted (nobody sued me or reported me to the ethics board even though they had a right to and I told them as much).
lol. That give you an idea…?
OMG Ted. You’re so incredibly on point here. The forces for bureaucracy and liability protection are so powerful – I can’t imagine this happening within our lifetimes. My major hope was to plant some seeds that there’s something better out there – and we’re mostly missing the boat at this point in human history.
I also wanted to make clear that no one needs a degree to do this work – it’s Basic Humanity 101: I take my lived experience and I do my best to learn about what it’s like in someone else’s shoes. Then, I use my imagination to try to understand and share a bit in the experience of what’s going on for them. Rinse, repeat, til we get it right together. The idea is that, with just that basic template for understanding, we call be really helpful to each other as human beings – far more helpful than the helping professions are currently allowing their members to be.
Moreover, (imo) in so many ways, it’s up to us as a peer/survivor/ ex-patient movement to show the rest of the world what this kind of ‘real humanity’ and ‘real help’ look like. Everyone else is so afraid of us that they run for cover and call 911 at the first sign that someone is in a distressed or intense place. If healing and help are going to happen, it’s up to us to figure it out, lead the way and show that it’s possible. Nobody is going to do this for us because they already think we’re getting the best kind of help there is.
In many ways, we’re in the same position as gay rights movement was when AIDS hit. If gay people hadn’t risen to the challenge, claimed their own value, loved each other and stood by each other no matter what, in all likelihood, they would have been kicked off the planet as the scum of the earth. Instead, the courage, loyalty and devotion they showed for each other (fiercely, unapologetically, in the face of death) put the rest of the world to shame. They proved to a doubting planet that gays (glbtq) deserved full status in the human race. (Not that anyone should have to go to these lengths, but that does seem to be what it takes as history repeats itself, e.g., India, workers rights, African Americans, women’s rights, …)
In that regard, I really appreciate you urging us all as a community and as a movement to consider taking up this banner. You’re such a powerful voice and force for activism – both in this country and worldwide. It would be so awesome if activism came embrace some version of radical acceptance for each other – as in: “In our community, there is no other. We don’t care how great our differences are. We don’t care how ‘obnoxious’ or ‘crazy’ or ‘dangerous’ anyone of us is acting. We will find a way to work with each other no matter what. We don’t care what lengths we have to go to. We don’t exclude our own, and we don’t leave our people behind. End of story.”
This is perhaps the biggest challenge of the modern world. Modern society is invested in othering because they think it’s more efficient to just exclude, other and shame everyone who is inconvenient, gets in the way or slows down the production line. They haven’t even considered whether there’s a better way to do things, and they have very little incentive to do so.
On the other hand, mad people have every incentive to prove that it can be done differently. We can and should be finding ways to demonstrate that offering each other humanity is far more rewarding, beneficial and, in the end, efficient than exclusion and shame. Our hallmark trait in madness is that we so often tend to be at the extremes of creativity and diversity — both in experiences and behaviors. We also tend to value our own humanity highly – and to feel pretty strongly about our own ‘truth.’ As a movement, that makes for a lot of differences – and also a lot of intense feelings around these differences
We have to find ways to navigate this challenge relationally. Our differences are a fact of life. Our intensity is a fact of life. Together, these things are killing us as a movement (a fact of life).
A common denominator seems to be that we all want to be shown humanity by each other. If that’s the case, quite possibly we can bridge the gap by each of us learning to offer it just as much as we want to receive it. It’s not an easy task, but, if we apply ourselves, I’m guessing we can get there together. We’ve already made an amazing start. We have eCPR, Intentional Peer Support, Hearing Voices, Alternatives to Suicide, Icarus groups…. If we work at this and refine these practices as a movement, we’ll not only be at the forefront of transforming ourselves, we’ll be making the change possible that our entire society needs as well.
LOL. John, I do so wish it had! It’s so amazing how infantilizing so many of us have been taught to be when we’re supporting someone in distress….
Very grateful to you for weighing in here. Part of the reason for writing this the hope that there might be others who felt similarly, and also maybe create some space for those of us who feel this way to be a bit more ‘out’ about it.
Thank you so much! I’d would be great to get in touch. My email is [email protected]
So true Alex! I love your idea that we can take control of our own healing and growth – and that there is a ‘true nature’ in us that we can listen to deeply to travel in that direction.
Hi Amanda – This is an awesome article. Extremely powerful and well-written. Thank you so much.
Really great comments Ted – like these points alot