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The first phase of co-optation I experienced in the anti-psychiatric abuse movement was in 1985. I was not a very active member or leader at that time, but I went to the annual "International Conference For Human Rights and Against Psychiatric Oppression" in 1985 and experienced the three-way division that left the North American movement, at least, in a weakened and demoralized state. This division may have also allowed NAMI, an organization of family members that at the national level receives most of its funding from pharmaceutical companies and is pro-forced psychiatry, to emerge as the voice of "mental health advocacy" sought out by the media.
The 1985 co-optation was brought about by government mental health agencies in the U.S. negotiating to fund a consumer movement that would co-operate with, rather than oppose, the mental health system. Before 1985 the groups I knew about met in people's houses and in public spaces, and on rare occasions received funding to open a drop-in center and house where people could stay. We held our conferences at a university campus when school was not in session, not in fancy hotels. From that time till today, developments have been such that most of our movement is dependent on funding from the mental health system. Some organizations use the funding creatively and even find that, by refusing to "pre-emptively comply" with onerous conditions, they can do much more than they might have thought possible.
The Convention on the Rights of Persons with Disabilities (a UN human rights treaty, on which I worked as a representative of the World Network of Users and Survivors of Psychiatry) represented, to me, in part a way to break through the stagnation in the movement, particularly the way that talk about abolition of psychiatric incarceration and forced interventions had been stifled by government money. Most likely I would not have expressed it that way at the time, but I saw an opening in human rights and the lens of non-discrimination that allowed us to say "we have been left outside looking in, now we claim a place at the table and redefine what's on the menu." This was helped greatly by the fact that we came in as part of the disability community which had politicized its own involvement in an earlier UN process so that the slogan "Nothing about us without us" was a rallying cry that made sense to governments as well as non-governmental organizations.
Since the adoption and entry into force of the CRPD, a new co-optation is happening that I had not anticipated. I should say at the outset that the mental health system co-optation is also continuing on the world level, with WHO and its supporters sponsoring "human rights" training and manuals that accept the practice of forced psychiatry, and promoting alliances of user/survivor organizations with mental health agencies based on this same premise. But the co-optation is not limited to the mental health system this time.
The International Disability Alliance has been converted from a coalition of equal partners in which each member had a veto over activities or positions that did not reflect its own positions, to an agency run by non-disabled people (executive director and other key positions) primarily from the global north that "works in" countries in the global south and claims to represent the global community of people with disabilities at the UN. WNUSP, a member of IDA, no longer has the power to collaborate with its colleagues (the other global organizations of people with disabilities and regional federations of disability organizations that are the members of IDA) to create mutually agreed agendas and carry out work together. Instead, the work is proposed by the executive director, approved by the IDA members as a "governing body", and then carried out by the secretariat, at times with token participation by the representatives of IDA member organizations.
Human rights organizations, including those dealing specifically with the rights of people with "mental" disabilities, and development organizations, saw the opportunities for their own growth and development of their work. While we were regrouping after the exhausting and exhilarating task of creating the CRPD, these organizations took advantage of the new treaty to continue on in their old work that was based on faulty standards, particularly the now discredited and superseded Principles for the Protection of Persons with Mental Illness (see Torture Rapporteur Report A/63/175, paragraph 44, and OHCHR Legal Measures Study A/HRC/10/48, paragraphs 48-49, acknowledging the MI principles superseded by the CRPD). Funders also approached these organizations practically begging them to get involved, despite at least my own voice cautioning funders that they should insist that such organizations partner with organizations of people with disabilities who have the policy expertise and authenticity to drive CRPD implementation and monitoring just as we created the treaty itself. (At least one organization is playing a token game, repeatedly inviting us to join in their agenda and ignoring our requests for honest dialogue and acknowledgement of our leadership.)
One phenomenon happening in all the international co-optation post-CRPD adoption, is the bypassing of WNUSP, the global organization of users and survivors of psychiatry/ people with psychosocial disabilities, with funders, human rights organizations, WHO and IDA secretariat seeking to have a direct relationship with national user/survivor organizations to provide them with training on the CRPD. This is disrespectful and not in keeping with the principle of "nothing about us without us," and gives the impression that we are not the suppliers of expertise but only the recipients of training by experts whose lack of lived experience seems to give them greater credibility. These agencies, all based in the global north, also appear to want to "protect" user/survivor organizations in the global south from the influence of leaders in the worldwide movement who are opposed to forced psychiatry. They seem to think that wanting freedom from oppression is a conspiracy of outside agitators - sound familiar?
Our movement has been slow (from my perspective) to understand the potential of the CRPD much less to be willing to believe in yet another promise that may remain unfulfilled. There has already been a lot of co-optation worldwide, so that those of us who want our national and local organizations to work for abolition of forced psychiatry have to deal with funders, non-user/survivor staff who usurp decision-making power, and members who are peace-loving and traumatized people reluctant to be in the middle of ideological wars. Despite all this it is happening, and user/survivor organizations everywhere are taking the CRPD and making it their own, adapting the message of freedom and self-determination to their own circumstances and speaking in the many authentic voices of our movement.
I feel sorrow and grief over the co-optation that has happened in relation to work in which I was personally involved. Yet I see the results of my work not only in the user/survivor movement taking up the CRPD standards, but also in the fact that many of those who fought me at one time or another end up adopting the positions and strategies I have advocated. I would rather the co-optation not be happening, as it drains energy and puts additional obstacles in our path. My hope is that we can defeat co-optation by naming it and coming together to cooperate for our freedom and for the solidarity to meet our human needs. The CRPD gives us a chance to develop policies appropriate to the society we live in, to play a role in governance responsible to the society as a whole. (I mean that we have an opening to put forward serious, comprehensive policies for laws and programs that reflect what we truly want. It is similar, I think, to what happens after a revolution when the revolutionaries have to govern.) As I have been arguing elsewhere, I believe we have the tools, models and skills to shape such policy. Watch for further discussions and let me know what you think.
The "growing up" of a movement does not have to mean co-optation, rather co-optation is a challenge that a movement has to face in its "growing up."
At Occupy Wall Street, a few people working on radical mental health, including folks from the Icarus Project, headed off an attempt to medicalize people's trauma - the trauma of occupying, confronting police violence, etc. This is a great thing, that they are bringing peer support and alternative/radical mental health practices to Occupy. When We are there, we are occupying a space that otherwise would be taken by those who negate our reality.
Within our own movement as survivors of psychiatric abuse, how do we take care of our trauma? There is the retraumatization of encountering reflections of our individual abuse again and again in our advocacy, in the stories of all our comrades, in the stories we have to tell to do the work. There is the overlay of discrimination that trivializes our experience, objectifies us as victims and most especially, simply refuses to encounter the reality that the acts were abuse. We constantly have to fight to insist on the fact that we were victimized, which risks fixing the abuse as a static and immovable fact about ourselves. We encounter not just disbelief but a worldview that is so alien to our own that it cannot see the acts of abuse as abuse. This worldview predominates around us to the extent that we can even think we ourselves are "crazy" for experiencing it that way. All this leads back around again to the labeling that begins the cycle of psychiatric abuse in the first place and serves as its justification.
I am about to attend a series of three meetings this month that I expect to retraumatize me. How do I even talk about this without using language, or evoking responses, that frame my experience in terms of "mental health" needs, which, because I am a survivor of psychiatric abuse, a once-labeled mental patient, carry connotations of risk, fear, danger to myself and those around me, needing to be contained? All activists experience trauma when we confront abuse and discrimination, in any system. The difference for me and for our community, is that acknowledging the trauma of activism risks discrediting us, risks being labeled as "oh too bad she can't handle it, that psychosocial disability/mental illness must be kicking in". Perhaps this is why some of us explicitly dis-identify, stay closeted or disavow the identity even while working on these issues. Distancing can be self-protective in many ways and it can be recognized as a response to trauma. Living one's life so as to avoid ever being psychiatrized again is another distortion of living as a response to trauma. So is repeatedly fighting back and trying to win despite getting locked up, force drugged, outpatient committed every time.
How can we talk about, both politicize and personalize, the trauma of activism in the anti-psychiatric abuse movement? By personalize, I mean to tell our own stories in a way that examines one's own heart and soul, and questions rather than taking for granted any shaping discourse: whether the discourse of abuse, of mental illness, of political correctness. This is also for me the key to telling our stories of life and the place of the psychiatric abuse within our lives. By politicize, I mean something actually similar: to question all the discourses that cause us pain and shape a truth that will contribute to ending the sources of that pain.
With the adoption and entry into force of the Convention on the Rights of Persons with Disabilities, in some way it often seems to me that a great hope is both being born and receding at the same time. My experiences with the CRPD peaked as a member of the drafting group, the Working Group of 40 individuals from civil society and governments selected to hammer out one text to be the basis of negotiation. It was there that I felt most seen, heard, accepted, listened to, as a learner and teacher in a community that looked into each other's eyes. For whatever reason that experience could not last, the idealism and even the willingness to overlook disagreements in a spirit of hope gave way to pragmatism and isolation that increased over time. The achievement of the CRPD text as adopted, the removal of the footnote, the good interpretations made by relevant bodies of the UN, were hard won and were worth fighting for. The CRPD has accomplished something in our community also, setting a standard of what we want and what we can now contemplate as being more achievable in practice, because it is said by the UN and not just in our own heads or small groups or demonstrations by crazy people who don't want to be treated as crazy.
But for all that, the CRPD remains hovering in the air, it needs to come to earth with some real changes being made because of it. By real changes, I mean changes that are attributable to the standards of the CRPD - equality, abolition of forced psychiatry as a degrading, inhuman and torturous practice without exceptions, abolition of any practices or laws defining us as inferior, especially and most insidiously those that claim to be for our protection.
The CRPD gives rise to more trauma for us as well, because it raises our hopes. I experience this on an almost daily basis in my interactions with various groups and individuals via the internet. I experience it when I see how much money talks and bullshit walks, as what we fought for gets co-opted by those who feel themselves to be the real experts on disability entitled to take this gift and make of it what they will. In the Working Group and in the Ad Hoc Committee (the open group of governments, with NGOs and others as obervers, in which the CRPD was negotiated) and International Disability Caucus experiences, it was people with disabilities as we organized and represented ourselves, who owned the Convention.
You can tell me that this is a rosy picture, that we faced painful discrimination throughout the Ad Hoc Committee, that my time in the Working Group might only have been so triumphant because I was new to this level of advocacy. But I want to recall for the record that something was there, that needs to not get lost.
At the same time, the spiral out also continues. So many of us are working on this now in so many different ways on every continent. Psychiatric abuse survivors/ users/ people with psychosocial disabilities sit on the Committee that monitors governments' compliance with the CRPD, and so far this influence has been beneficial.
If I can offer anything of hope in talking about the trauma of activism, I would like to see us get past whatever has been dividing us, whether competition or jealousy, failure to acknowledge each other, sexism, racism, dominance of the north and west, elitism, fear of things we don't know. We all have different perspectives on what happened in the Ad Hoc Committee, and even on what happened in the "team" of psychiatric abuse survivors / users/ people with psychosocial disabilities that came together at the UN. The CRPD belongs to all of us, to WNUSP, PANUSP, ENUSP, all our national and local organizations, each one of us whose human rights has been violated, even those who don't self-identify. I will always fight against co-optation and any attempt by anyone even another survivor/user/ person with psychosocial disability, to suggest the CRPD is no more than a restatement of the ugly and abusive MI Principles (Principles for the Protection of Persons with Mental Illness), which says all the abuses can be lawfully done so long as the rules are followed. I don't say this to put myself forward as being above anyone else, I do recognize democratic organizations as speaking for the majority voice of the community whatever it turns out to be. But I say that I will fight for this, as a survivor and as someone who was briefly in a privileged position of representing our community at a watershed of its history that may still represent a hope for freedom and equality - at least while that hope lives in us, everything the CRPD really stands for cannot die.
Meanwhile, to nurture ourselves as we find ways to bring the new world into being, I want to suggest that we need a "robust civil society" of psychiatric abuse survivors/ users/ people with psychosocial disabilities. We need our own academic departments, law departments, conferences, opening up conversations in politics, places of worship, libraries, arts and culture. We need to come together in ways that aren't about either "giving and receiving support" on the one hand, or "advocacy" on the other. We need to nurture and cultivate whatever is our mad culture, whether a culture of resistance, spirituality, humor, truth. Much of this is already happening, and in saying it here I am honoring it wherever it happens. I have always understood "law" itself to be a part of culture, and working with law as cultural work. Law shapes perceptions and values as well as, at least in state societies, functioning as a justification and regulation of the state's monopoly on coercive power. Just as we have begun to reshape international human rights law on the rights of people with disabilities, we may need to reshape law itself and legal institutions, if the vision of freedom and creativity expressed in so much of mad culture is to be made real, not for a privileged few but for humanity. Such a vision seems out of reach but is a conclusion necessitated by the same logic that says forced psychiatry is torture and deprivation of legal capacity is a violation of fundamental personhood.
Whatever we all do as we go forward, however we find to nurture our visions, strengthen our communities and organizations, and persistently and patiently teach others our visions and our truths, this is a hope and prayer for wisdom, courage and healing.
This morning I woke up to several posts about World Mental Health Day. One post suggested that everyone check their own mental health and see if all is well. Others in a similar vein call for expanded mental health services.
Can we have a shout-out about the dark side of mental health awareness and mental health services?
For my whole life, as a girl and woman I have experienced being told to check myself that something might be wrong with me. "Do you want to see a therapist?" My mother could not imagine satisfying my childhood needs for comfort and guidance herself, and I could not imagine going to a stranger for love premised on the idea that something was wrong with me. Later, friends that felt uncomfortable to hear me talking about pain and suffering outside their experience, particularly psychiatric abuse, also felt they had nothing else to offer but the advice to find a good therapist.
I have found something beyond solace and comfort, in struggling with my life as the Biblical Jacob struggles with the angel. In surrendering to my higher self like Odin hanging from the tree and opening his eyes to the Runes. In understanding now, that I have to begin turning the wheel, putting my shoulder to a heavy stone wheel along with others, to set in motion what I have begun.
Psychiatric abuse was hell for me, and I only experienced it for six weeks. I was never tied to a bed, stripped naked or locked in a small room with no toilet, as so many of my comrades have been. I was "only" made to take a drug that terrified me, disarranged my senses and disturbed my consciousness to the point of wriggling out of my own skin. I was "only" asked to put on a hospital gown rather than my own clothing, and taken behind a locked door. I "only" asked them after some time to increase the drug dosage hoping it would sedate me beyond any feeling, to get rid of what the drug itself was doing to me - and then I got my wish when I passed out unconscious from the overdose and they then took me off the drug because my parents didn't want them to kill me, only fix me.
So on this mental health day, let's take a moment or two of silence for those who were killed by psychiatry, like my friend Ellen Glick Haley who died from complications of an operation made necessary by a drug she was forced to take in outpatient commitment. Louise Wahl who died from kidney failure, refusing dialysis, from damage to kidneys caused by lithium.
Let's take a moment of respect for all of us who continue to brave the fear, hatred and bigotry by standing up as Mad and Proud, survivors of psychiatric abuse, users of services, knowing that people read "crazy person, watch out." For all of us who advocate for each other and ourselves, who create new ways of doing relationships that work through the conflict without labeling anyone. For all of us who rebel as individuals, escape the locked wards, who dream and practice human rights advocacy.
Let's quietly remember, that people are still dying from psychiatry, that people can still be locked up and have their minds and bodies violated in psychiatry (involuntary admission, commitment, "lack capacity" to make decision so "No" doesn't mean "No" etc.), and that the state fully condones this torture and ill-treatment through its laws.
For people who are seriously concerned about cultivating a life of spiritual, physical, mental and emotional harmony and contentment, how about joining with CHRUSP, with WNUSP www.wnusp.net, with the United Nations and working for abolition of mental health laws that allow these degrading, violent and traumatizing practices?
In solidarity,
Tina Minkowitz
People everywhere are taking back public space, calling for peaceful revolution and claiming economic and political democracy for all the people of the world. This is what many of us have been waiting for. It is also the meaning of human rights. Human rights do not come from abstractions created by lawyers, they come from people struggling with manifest injustice. Calling attention of the world to unjust, unnecessary suffering that often has a lot to do with inequality and exploitation.
CHRUSP stands with the 99% of the world, and welcomes the opportunity to re-make our world, with face to face horizontal relationships, courage and solidarity in the face of bullying, taking care of everyone's needs without shame. These values so well expressed in the people's assemblies and occupations are the same as those of our (peer, Mad, ex-mental patient, psychiatric abuse survivor) movement.
Please join us and others on a Facebook event page Occupy Mental Health/Occupy Psychiatry https://www.facebook.com/event.php?eid=228200117234391 to discuss, plan, share information about how we can participate in this historic global movement for change and democracy.
PsychOUT Conference comes to New York this year, hosted by The Opal Project under the leadership of Lauren Tenney (a CHRUSP board member).
Please see http://www.theopalproject.org/psychout.html for announcement and registration forms.
Note that the conference is free of charge.
CHRUSP president Tina Minkowitz will be presenting 3 workshops at PsychOUT: one on an overview of the CRPD as applied to "psychiatrically labeled people," one on developing an inclusive position on psychiatric drugs, and one an open discussion on how to do away with mental health laws.
CHRUSP board member Daniel Hazen will be presenting a workshop entitled "Psychiatric Torture and Violence Against Prisoners: Liberty and Justice for All: Human Rights and Advocacy."
