Category Archives: disability human rights

Mother Justice

I have written before about the principles of bodily autonomy and embodied personhood, which are the root of how I understand myself as a woman living under male supremacist oppression, the most intense form of which for me took place as psychiatric commitment and forced drugging.  The words are inadequate and do not convey the terror and shame, grief and anger, cold rage and death to love, that took place in me within those six weeks.  Nor do they convey the specific nuances of who did what and how, the ending of one world and beginning of another, the monumental changes that also took place inside me where a new self was taking root that I had to nurture into being from the death of the old.

This all happened in my body, and as dissociation from my body.  Neuroleptic drugs, and in particular haloperidol which was forced on me, cause a person to dissociate from their body and their sexuality.  They cause psychic apathy (numbness).  They further cause intense psychic and physical anguish known as akathisia.  These effects have been known to psychiatry since the first use of the neuroleptic drug thorazine, and David Cohen argues persuasively that the numbing and akathisia are not side effects but the signature effect of neuroleptics and the intended result.  This all happens in the body.  It happens where the body meets mind, in the mystery of the brain.  When it is happening you as a person become split between the effect you experience and some core awareness of yourself that needs to remain untouched.  In my case I felt my soul flee to a part of my body on the left side, the point at which years later I read that the soul leaves at the time of death.  That was also the place where the earth began speaking to me.  But I had no access to that core self during the time of forced drugging and for long years after.  The most intense part of what happened to my body was to find myself looking upwards without having any reason to do so, which I later learned had a name, oculogyric crisis.  It happened slowly enough that it felt like my will was hijacked by the drug, rather than feeling like a physical spasm. There was another drug to relieve that, one that I enjoyed the effects of, as it felt like it obliterated not only some of the neuroleptic anguish but also a little bit of an artificial high itself, like what I imagine might come from sniffing glue.  At the time it was enough, a relief from the oppression and almost unimaginable, uninhabitable, feeling of being locked up and going through this absurd situation.  Finally all the drugging was ended after I asked for more of the haloperidol to sedate me out of my misery, which they readily acceded to, and I promptly passed out cold and woke up with an IV in my hand.

Telling all this almost forty years later feels strange, a story that I remember clearly and that is so specific, so much still living inside me, and yet distanced, as I feel my body now intact, relatively, I am able to feel what I couldn’t then, more feelings come through my body each time I remember.  Physical, acute memory.  Of a time when the signature effect was dissociation from my body instigated by a violent assault on my body that left no bruises.

The hospital was men’s space, defined and controlled by men, named by men, sterile as a machine or simply drab and sad, bars and fear.  A prison for women where bodies were rebellious entities to be subdued.  Where souls were intimidated out of sight out of mind, or drugged into shocked submission.  I will never forget Shoshanna’s eyes looking at me from her straitjacket, over the blue and white back to front front to back hospital gowns they finally made her put on.  I will never forget Edwina who fought, who would not be cowed, and maybe she never did give in.  Or Stephanie, who was kind and was only there because she had epileptic seizures.  Or in the other place, the woman who played piano fluently but with no feeling, heavily drugged.  Or myself, how would I have seemed to anyone else?  Young and frightened and aloof, doing what I had to do to survive including becoming the president of the patient’s council selected by the nurses to talk about the other patients and agree to their selection of the next patient’s council members.

Can you imagine that saying all this now, thirty-nine years after the fact, still causes me to cry and brings up new feelings in my body?  That it brings up new awarenesses and things I didn’t understand before?  Compassion for my young self that I needed and didn’t have at the time.  And how long it took me for the parts of this awareness to fall into place.  And what happens to the women who are locked up for decades, who lose decades of their lives to being mental patients inside or outside the walls, losing one home after another and being outpatient committed in the end, and it is still not the end, still living and struggling and surviving and creating.  How do you heal when they are still poisoning you?  When they are still controlling where you live, what you do with your time, when you are in all kinds of databases and the authorities know you are a mental patient and treat you as such in any interaction you have with them.

Still oppressed, still constrained, is also how I live in the ordinary dreary free world of patriarchy where I am privileged enough to live in an old grumpy house in the woods, with my wife, in a place that called to me and would not let me go.  A place that teaches me and talks to me.  And that I retreat to and want to also be a healing space and sanctuary to bring other women to, to bring women’s energy and not feel that I have to go out into men’s world in order to have the world of human beings.  I am a lesbian and my body is female, I love other embodied females as a lesbian, that is what being a lesbian means.  My female body is not an afterthought, and it is not a prejudice.

My having lived as an embodied female, in a world where men – embodied males – are legally licensed to act as if the world, all of it, is theirs and I am only a guest, object of prey, or presumed servant in their lordly house, matters.  It is not an afterthought and it is not a prejudice.  My choosing women – other embodied females – by passionate choice and celebration, not only as a sexual orientation or “preference” but as a life path and spiritual calling, is not an afterthought and it is not a prejudice.

My world is female.  My experience of the earth talking to me, the mother present in everything I do, reaching out and touching and touching back, over so many loving decades now, is a female to female touch.  Male presences come and go, they are ephemeral in this space.  It is part of who I am, my embodiment in this life, on this earth, to be a lesbian and to be fully within female energy and space.  My work takes me outside that in its service, and I follow my calling to law school, to the United Nations, to rooms and rooms, hotels and streets where I have to dissociate again, where I have to find myself focusing words and ideas to make a new path that is coherent with female autonomy and power, through men’s world, that will either change it or be there for a new world to use when this old one we are living in is destroyed.

Those who read this will dismiss me on a number of grounds, as a witch, as a crazy bitch, as a terf, as a dangerous fool who shouldn’t be let loose or given a speaking platform.  And I can take that risk now, hoping that there is love beyond the denial of female autonomy that is spewing in this present time.  I won’t be silenced or be silent, and I will choose where and how to engage.

Comment for Peerly Human #6

This comment was written for Sarah Knutson’s Peerly Human blog, see quote below:

#6. Quackery and Torture Masquerading as Medicine

This is Day 6 of our 30-day blog on the Declaration of Principles adopted by the 10th Annual Conference on Human Rights and Psychiatric Oppression held in Toronto, May 14-18, 1982.  (More info here.)  Today we are talking about Principle 6.

Principle 6 reads in full as follows:

We oppose forced psychiatric procedures because they are at best quackery and at worst tortures, which can and do cause severe and permanent harm lo the total being of people subjected to them.


Today stepping into international human rights lawyer role to share technical information and resources.

The Special Rapporteur on Torture is a “Special Procedure” of the UN Human Rights Council. Different individuals have held that post over time.

The first SR, P. Kooijmans (in 1986) ( listed administration of neuroleptics and other drugs as one of the forms of physical torture done in psychiatric institutions and detention. (The UN, motivated by reports of psychiatric abuse of “sane” political prisoners, started work on a declaration that in earliest forms was quite good and general in condemning forced drugging and similar practices. Then psychiatrists persuaded them that some force was necessary against ordinary mental patients, with the resulting horror show of the 1991 Principles for the Protection of Persons with Mental Illness and the Improvement of Mental Health Care. I won’t link to it, look it up.)

In 2002 drafting and negotiations started for the Convention on the Rights of Persons with Disabilities (CRPD). Having been in the right place at the time, I had just finished law school where I researched human rights issues related to psychiatric oppression and found the 1991 MI Principles, in a human rights law class, and also put together disability non-discrimination law with core human rights including torture to apply to psychiatric oppression. This was inspired a similar approach taken to making visible rape and other misogynist violence against women as torture and other hr violations, by feminist law professor Rhonda Copelon and others. I had ideas about how to anchor the abolition of forced psychiatric interventions to prohibition of torture, prohibition of arbitrary detention (which includes any detention that is discriminatory, as psychiatric commitment always is), and eventually the right to equality before and under the law as including legal capacity to make one’s own decisions. You can read more about details of development in this paper, prepared for publication in a book on CRPD but withdrawn by me due to editors’ attempted censorship: The prohibition of forced psychiatry as torture didn’t make it into treaty text, but legal capacity + free and informed consent on an equal basis with others in health care took care of it. The arguments about torture per se persuaded human rights experts at the UN enough to convene an expert seminar at which I presented along with others, which led to the first post-CRPD report by a SR on Torture, Manfred Nowak, in 2008 ( see also (

Nowak’s report was a real breakthrough in that he adopted the language and concepts that I had proposed, centering the fact of discrimination as why forced psychiatric interventions were being legitimized against people labeled as “mentally ill”. He also was one of the first UN officials to recognize that CRPD prohibited involuntary commitment and involuntary treatment, contrary to the MI principles which accepted it. His report didn’t say that forced psychiatry was torture per se, but that it “may constitute” torture or ill-treatment. Much good in the report, worth reading in full. Note some standards have been improved by the Committee on the Rights of Persons with Disabilities, but some issues Nowak dealt with in greater detail.

In 2013, after somewhat reluctantly being persuaded to advocate for the new SR to go further than Nowak, another expert meeting and report by SR Juan E. Méndez, which both advanced the positions and also was messier, getting a few points simply wrong (e.g. misstating what Nowak had said) and contradicting himself in succeeding paragraphs on psychiatric detention. He advanced the positions primarily by calling for an absolute ban on forced or non-consensual administration of psychosurgery, electroshock and mind-altering drugs such as neuroleptic, and implicitly including this in a general statement that all the practices discussed in the report were instances of torture or other ill-treatment, in respect of which states (countries) are obligated to make reparation. Here is the report ( and you can also see here ( links to his statement to the Human Rights Council (which removes offending contradictions and calls for an end to disability-based detention as well as forced interventions), and in contrast his dialogue with the World and American Psychiatric Associations in which he backtracks and maintains that even the absolute ban is qualified by language that to me is frankly incomprehensible. (My desired interpretation of his report, which Méndez himself apparently rejects, is included in a compilation published by Méndez and his colleagues at American University, also linked on that page).

Méndez’s call for an absolute ban provoked the outrage of psychiatrists and despite his disclaimers the plain language was circulated and understood well enough to inspire survivors everywhere and increase support for our human rights by well-intentioned allies and experts.

Meanwhile the Committee on the Rights of Persons with Disabilities had started their work in 2009, and developed a body of interpretive practice (jurisprudence) in Concluding Observations on the reports of states parties (countries that ratified the treaty, now up to around 160). They made it clear quickly that psychiatric commitment and forced treatment were prohibited, and two general documents issued in 2014 and 2015 cemented that jurisprudence firmly in international law. The CRPD is binding on all 160+ states parties, and the CRPD Committee is generally accepted as the ultimate authority on the interpretation of the treaty, as a universal instrument that should have the same meaning in all countries. These documents are the General Comment on Article 12, Equal recognition before the law ( (dealing with legal capacity – see especially paragraph 42 dealing with prohibition of forced psychiatric interventions as torture/ill-treatment/violence, but worth reading the entire thing, also see paragraphs 13-15 saying that actual or perceived decision-making skills cannot be used to limit a person’s right to make decisions). The second is the Guidelines on Article 14, liberty and security of the person ( reaffirming absolute prohibition of disability-based detention including mental health commitment regimes based on “danger to self or others”, and for the first time acknowledging without qualification that forced treatment, as well as restraint practices, constitute acts of torture or other ill-treatment in violation of Article 15 of the CRPD which says that states must protect persons with disabilities from torture and other ill-treatment on an equal basis with others. (See paragraph 12 for this.)

Survivors should be aware that the CRPD Committee’s jurisprudence is now the most authoritative statement as to the illegality of forced psychiatric interventions as a form of torture or other ill-treatment under international law. The CRPD is binding on the vast majority of countries in the world (see A number of countries have also ratified CRPD’s Optional Protocol ( that allows individual to bring complaints of violations to the CRPD Committee – provided the violations happened after the CRPD and OP entered into force for that country and that you have used all available domestic procedures that reasonably might give effective relief. You do not need a lawyer but it is a good idea to get advice from someone who knows and understands well this aspect of the CRPD and is in sympathy with the absolute prohibition. CHRUSP (in which I am the principal individual carrying out pro bono work, as well as President) is interested in supporting this work and preparing amicus briefs to bring out complementary legal points in appropriate cases.

For people in the United States and other countries that have not ratified CRPD, or in countries that haven’t ratified the Optional Protocol, there are other UN mechanisms that can bring attention to individual cases and systemic violations, including the Working Group on Arbitrary Detention and the Special Rapporteur on the Rights of Persons with Disabilities. The WGAD issued a set of Basic Principles and Guidelines also in 2015, see ( but be aware of this version with footnotes some problematic ( It is Principle 20 and Guideline 20 specifically. The Special Rapporteur on the Rights of Persons with Disabilities issued a joint statement with the SR on the Right to Health, calling for an to forced psychiatric treatment (see

There are other UN bodies dealing with torture and ill-treatment that are still in the grip of psychiatric hegemony, in particular the Subcommittee on Prevention of Torture, which recently issued a position statement calling for forced psychiatric interventions as a positive measure to implement both the right to health and the right to freedom from torture (again I will not link to it but you can find it if you search). The Committee Against Torture, which monitors the Convention Against Torture, and the Human Rights Committee, which despite its arrogant-sounding name only monitors one treaty, the International Covenant on Civil and Political Rights, have grappled with CRPD standards but still maintain only a “general” prohibition of forced treatment subject to exceptions (which is no prohibition at all). There is hope for those two treaty bodies as our sisters and brothers in several countries keep bringing them reports (US has ratified those two treaties, and folks in US can participate too, personally I am burned out on that part of the advocacy). (Talking here about general reports on the country situation, shadow reports as part of the regular review process also available in CRPD Committee for countries that have ratified that treaty. Too long to explain further now, but look at the Committees’ websites for information if interested.)

Other treaty bodies have been more promising – Committee on Elimination of Discrimination Against Women (CEDAW), Committee on Economic, Social and Cultural Rights (CESCR), Committee on the Rights of the Child (CRC) and Committee on Elimination of Racial Discrimination (CERD). CERD is one that some of us in the US were first to approach from survivor movement, they did not make specific recommendation on our issue (forced and coercive mh interventions on people of color in the US) but asked for more information in next country report; survivors in the US will need to be ready to get involved in the next reporting cycle.

Bottom line: know your rights and know enough to counter arguments that try to discredit what you say. CRPD Committee’s GC1 para 42 and Guidelines on Article 14 para 12 are the highest authority to point to at the present time for the point that international community recognizes forced psychiatric interventions as torture. The SRT reports are good as background, but we now await the next SRT (to be appointed this year) and hope this individual will renew the mandate’s commitment to not only upholding CRPD as a standard legally binding on 160+ states parties but enthusiastically promoting it and taking it as the basis of the SRT’s own work in relation to prohibition of forced psychiatric interventions, which Méndez had questioned and diluted.

We as civil society, as survivors with the moral authority to name injustice and promote enforcement of human rights against violations, and to propose remedies, still have the primary role to play and there are many ways to get involved directly with human rights mechanisms. Being involved by telling your stories and giving perspectives through this blog (and see also also builds the momentum and public awareness for abolition of all forced and coercive psychiatric interventions everywhere.

Nobody to Insider and Back (or Not)

From Nobody to Insider and Back (or Not): the Ad Hoc Committee[1] as Constitutional Moment

Power functions differently now in the international disability movement than it did for a brief period during the CRPD drafting and negotiations. Not having been around before then, I can’t speak to the building up of WNUSP[2] and IDA[3] that happened before 2002. I was a newcomer and I had ideas and I learned fast. I could see that the real power was in the pen, that being part of any drafting group was where influence could be exerted. We were there to make a treaty, and before that we had to set out the positions of increasingly collective and authoritative or quasi-authoritative drafts. And we had to set out the rules for how we would organize ourselves as civil society.

I became centrally involved in all that, functioning as a member of the steering committee of the International Disability Caucus[4] and serving as WNUSP’s representative to the Working Group[5] that drafted the original text of CRPD to be placed in negotiation. Before that I had drafted text on behalf of WNUSP and some of our text proposals had been incorporated into the Bangkok Draft developed at a regional meeting of governments and NGOs in Asia-Pacific, and in the Chair’s draft that the Working Group started from, along with the large compilation of text proposals put forward by governments and NGOs. I had collaborated on position papers and on a constitutitve framework of principles for the IDC, though it is lost to me now, and no one seems to be able to find that document.

In the course of this work I became an insider almost overnight. I went from a nobody, a rank and file member of a despised minority movement of survivors of psychiatric assault, just graduated from law school in early middle age, to a spokesperson and power broker within the international disability community working on an international treaty. WNUSP members and other survivors who joined the work at the UN sometimes saw me as autocratic since I had definite ideas of how to move strategically in this situation based on the positions and principles I had already established with the approval of the WNUSP board and with participation by the membership, when to give way apparently in order to win ground elsewhere that achieved the same goal. They didn’t seem to appreciate the work I had put into this or the decisions that went into it; nor did any of them want to take joint responsibility with me for coordination of our delegation overall, rather they seemed to expect me to administer and act as support staff so that they could come in and do the advocacy work that they felt moved to do at any given moment.   While some of these individuals made substantive contributions, the structure was already there in the achievements I had laid down, and it caused me pain and confusion to have my work disrespected in this way. I wasn’t making a feminist analysis at that time, and thought I was taking up too much space and needed to make way for others, so I built up their achievements and did not claim credit that I deserved, which led me to have to work on making up for it later, and this in turn put me in a position where people saw me as power grabbing. You can’t win.

As an insider, besides what happened within the survivor community, there was the access to UN decision-making process. We actually were part of the treaty making officially as well as unofficially. The IDC as a well organized spokesperson collectively, that functioned with a minimum of dissent since we negotiated well internally, had real clout and used it. Dissent that remained unresolved came from an indigenous person with disability who felt that the treaty was not useful unless it included specific provisions recognizing indigenous people’s situation specifically, and from Australian organizations that disagreed with positions taken by the IDC including the prohibition of forced psychiatric interventions. The IDC worked together based on leadership of DPOs[6] and specifically of the peak bodies representing a particular constituency; the Australian organizations did not represent people with psychosocial disabilities so they had no standing to object to the positions put forward by WNUSP, in addition a national minority position would have had to be worked out with the global movement; they chose instead to remain outside the IDC and not subject to its principle of DPO leadership.

We met with UN officials, state delegations and with the Chair of the Ad Hoc Committee, as an informal yet critical and openly acknowledged negotiating partner. It would have been a disaster for the negotiations if a treaty had come out that merited criticism or rejection by the disability community. They recognized that we had expertise that states lacked themselves, and that the relevant expertise was the transformation of lived experience into forward looking plans for reform of laws and practices to make an inclusive society – more than the technical expertise of non-disabled lawyers much less medical professionals or service providers. We appealed to the fundamental general principle of non-discrimination and for that brief window of time we were able to make ourselves visible and relevant as protagonists and subjects of international law. I have come to see the Ad Hoc Committee as a constitutional moment in the creation of a global bill of rights for people with disabilities.[7]

Fast forward from 2006 when the Ad Hoc Committee completed its work, to 2016. Ten years, and we are celebrating the anniversary. Why does it cause me so much pain?

The first sign was the Conference of States Parties.[8] Pioneered by the CRPD alone in human rights treaties, modeled on a process taken from the Convention to Ban Landmines, the Conference is empowered to discuss matters related to implementation of the treaty and not only to meet for biannual elections of members of the independent monitoring committee. The COSP after the first few years was easily dominated by funded projects that could put together slick power points, videos, and full color printed books and brochures, that could garner high level officials to moderate their side events, that could bring speakers from anywhere in the world. This left out the very grass roots DPOs that had energized the Ad Hoc Committee; it left out WNUSP and it left out me. Funders also had gone after human rights NGOs and urged them to undertake work on disability rights and to work with DPOs; thus we have tokenism and another route to being supplanted, where non-DPO NGOs take the money and do things their way and carefully circumscribe the participation they accord to disabled advisors or DPO collaborators.

I stopped going to COSP when it became clear I could do no real useful advocacy there, and that no one cared what I thought any more. The formal role we had in the Ad Hoc Committee, the structure for approval or disapproval, agreement or disagreement, was gone. And there was nothing to take its place. At the last COSP in 2015, a psychiatric organization held a side event and argued that mental disability was different, that the rights don’t apply to us in the same way. A colleague of mine went and did her best to counter this but the damage has already been done. The psychiatric organization discussed at this side event their collaboration with UN DESA[9] in preparing a toolkit for Africa about the CRPD. This year the COSP has a theme of “no one left behind,” and will include a subtheme of mental and intellectual disabilities. I do not want to imagine whom they will invite as speakers, and I don’t plan to attend.

Although I have now left my position with WNUSP and work independently through my own nonprofit DPO, CHRUSP,[10] I will note that it doesn’t seem likely that anyone in WNUSP will find the funding to attend much less to make its organizational presence known. If they do it will be a good thing, but little and late. It will take another revolution, another constitutional moment of reinvention, to take back the power and responsibility that we had. We have gone once more from being insiders and collaborators in the creation of public power, to victims and petitioners for power holders to please act for us and not against us. We can’t control what they do and they seem to take pleasure in remaining aloof from us to prove their neutrality, whereas they don’t seem to have the same concern for remaining aloof from psychiatrists or from states that continue to violate our human rights.

I have written “they” and in the UN context the power holders are multi-focal, there is the UN secretariat, the mandate holders and experts, and the states parties themselves. In the Ad Hoc Committee there was a community of interest, an epistemic community working towards a single goal; the Working Group was the epitome of hearing and seeing one another as a smaller representative group of both states and NGOs, but the whole of the Ad Hoc Committee process imperfect as it was, and with flaws and fault lines and betrayals, including the notorious footnote on Article 12 that was ultimately removed, was a community that had coherence and developed a kind of internal constitution in the earliest sense, a way of being collectively that made sense and that affirmed us. Now – power is dispersed and other actors are better equipped than DPOs to maneuver in it. The CRPD becomes part of UN machinery and NGO and philanthropy and state machinery, it becomes part of an existing governance system with its own multiple pecking orders. The constitutional moment though it had internal integrity did not sustain itself.

There could have been other choices made by the international disability community, including myself. We had a choice to continue the IDC or to revert back to IDA, and I chose IDA; I chose wrongly siding with those who had enabled WNUSP to be recognized as an equal. It feels like a pitiful choice and recognition; there were those in WNUSP who wanted me to choose IDC, but I feared that IDC without IDA would be a free for all, and IDA seemed like a better bet to preserve DPO leadership. There wasn’t good enough internal communication and trust to allow us to make clear collective decisions in WNUSP, and I still felt the pressure of the work being only half done until the interpretation was secured.

That was a fateful decision (by all of us who played a role – I cannot guess how it might have played out differently if I had personally taken a different position) and EDF[11] decided to take over IDA or supplant it, they threatened that if we did not open up IDA to regional organizations they would organize a competing worldwide structure made up of regional federations. I made a second mistake by caving into this threat, thinking it was a just demand that we had accepted in the IDC, and ignoring the power play that was obvious and portended problems to come. An individual who had been representing EDF in the Ad Hoc Committee put himself forward as a secretariat, to be seconded by EDF meaning they would pay his salary. He started unassumingly, taking the kind of role that logistics people had done earlier, but eventually defied me in particular in matters of substance and prevailed when no one else in IDA stood up for me. I was the only one who preferred to function as an expert and as a technical person who actually wrote documents and made legal arguments and drafted position papers. Me, and the person who now styled himself Executive Director and wanted me out of the way. He eventually succeeded as I hadn’t understood the power games well enough until I was backed into a corner.

Today, it is the IDA secretariat[12] that wields power in Geneva, controlling access to information and occupying a space between the CRPD Committee and civil society. It is one staff person in particular who plays this role, while the DPOs that make up IDA are brought in as figureheads and showpieces. WNUSP was an exception since I had an interest and advocacy agenda to secure the interpretation, and now I continue as CHRUSP in a similar way. But we do not have the power or influence or access as part of the disability community that we used to; the fiction is maintained that IDA represents civil society in particular DPOs and that collaboration in a formal sense of accountability, or a formal/informal sense of working relationship that allows access to power as a matter of quasi-right rather than privilege beyond the formalistic procedures, is limited to the IDA secretariat and not available to IDA members directly. This is a remarkable takeover of power, a kind of constitutionalization of IDA that flies in the face of IDA’s original aim to act as an alliance of multiple constituencies each of which was sovereign in itself; instead we have empowered an entity that is serving itself and the UN system and only indirectly serving any of us, for example by instructing national DPO coalitions on the accepted understanding of Articles 12 and 14 as prohibiting forced treatment. That is not enough.

UN experts and mandate holders, CRPD Committee members and UN secretariat staff, do not collaborate openly with WNUSP in side events, after a brief time when this did take place and closer collaboration was contemplated. They do collaborate in this way with NGOs that work “for” or “on” the human rights of people with psychosocial disabilities, but WNUSP is curiously disappeared from view, as if we have become personae non gratae. I am welcomed as an expert in many settings at the UN and other human rights spaces, but collaboration that is presented outwardly to the general public is missing.

It is one thing to feel hurt by this personally, especially given the personal friendships involved. It is worse to know that the small space allocated now is what is left for us of the transformative constitutional moment of the Ad Hoc Committee. People have their careers, their mandated responsibilities, and their personal sense of expertise and accomplishment. We have come so far away from the way that we worked together in the Ad Hoc Committee, power shifts and changes to assimilate into an administrative system that cannibalizes its best achievements. It is not that I wanted the Ad Hoc Committee to go on forever. If a constitutional moment is to mean anything, it has to create something that is separate from the constituent assembly. But it is also necessary to be honest about what has happened, and about the institutional shifts in power that are endangering our successes.

Where I end up personally at this point is, stay lean and mean. There’s a lot I can’t reach. Go for the Optional Protocol. Train people who want to learn and who want to do this work. We are still here, we still see each other.


[1] Each italicized word will be defined in an endnote. The Ad Hoc Committee on a Comprehensive and Integral International Convention to Promote and Protect the Rights and Dignity of the Persons with Disabilities was an open subsidiary body of the UN General Assembly that met to consider and then to draft and negotiate the treaty that became the Convention on the Rights of Persons with Disabilities. States (governments) had formal decision making power but a significant role was allocated to, and created by, NGOs (non-governmental organizations), particularly organizations of people with disabilities.

[2] World Network of Users and Survivors of Psychiatry is an organization that represents users and survivors of psychiatry and people with psychosocial disabilities at the global level. Membership is open to all users and survivors, self-identified as individuals who have experienced madness or mental health problems or who have used or survived mental health services, and to user/survivor-run organizations.

[3] International Disability Alliance started as a cooperative forum of the leadership of global disability organizations, including WNUSP. IDA created the International Disability Caucus together with other NGOs that attended the Ad Hoc Committee meetings, and during that time functioned mainly through the IDC. IDA was based on a principle of respect for the sovereignty of each organization with respect to its own constituency, and included both cross-disability and single-disability organizations (however, one organization was made of service providers primarily, and another was and is primarily family members of people with intellectual disabilities).   Later, IDA was changed to a legal entity and now functions primarily through its secretariat. See below in text.

[4] International Disability Caucus was created to be the collective platform of the disability community in the Ad Hoc Committee. It had a steering committee composed of the IDA members (global organizations, first seven and then eight), regional DPO (disabled people’s organization) representatives (five), a few non-DPOs doing considerable work on the treaty, and added representatives of women with disabilities, indigenous people with disabilities, an organization working on the rights of children with disabilities, and those who were otherwise unaffiliated. In addition to the steering committee and plenary meetings of the Caucus, we formed workgroups on specific articles or groups of articles, covering the entire text. We put out a daily newsletter calling attention to issues of concern for that day and reacting to the previous day’s negotiations. These latter two mechanisms – the workgroups and the newsletter – were not present at the beginning but were created during the process. Organizations that were part of the IDC provided daily summaries, which can be accessed in the negotiation archives on the UN website.

[5] The Working Group was made up of 27 states, 12 NGOs and one national human rights institution. State delegations were allocated on a regional basis and chosen by regional groups; NGO representatives were chosen by the IDC with understanding that it covered the 7 global IDA organizations and 5 regions, and that is how we allocated our share. The Working Group met in January 2004 over a two-week period to draft a single text that served as the basis for negotiations.   It was a significant milestone in that all the elements of WNUSP’s advocacy were included, although the lack of unanimity on some points was expressed in footnotes. See my paper WNUSP Advocacy on the CRPD: The Emergence of a User/Survivor Perspective in Human Rights for more information; also see the UN CRPD negotiation archives.

[6] DPO stands for disabled people’s organization, an organization of people with disabilities, run by and for people with disabilities. It might include a minority of non-disabled members. Organizations of users and survivors of psychiatry are considered DPOs, as we are discriminated against on the basis of perceived disability whether or not we personally identify as disabled.

[7] I have been reading lots of material on constitutions and constitutionalism, for two classes this semester on Comparative Public Law and International Constitutional Law and Democracy. I can’t put it all together at this moment, but as I read what comes to me most clearly is that the human rights treaty-making process, particularly of the CRPD, was a constitutional moment. It was a focused, deliberative process that created an “international bill of rights” for people with disabilities, that was legitimized both by the formality of creating binding international law and by the organized, inclusive and representative participation of people with disabilities as well the widest possible number of governments from all regions. The process drew on principles that linked us with the existing international human rights regime – non-discrimination, the principle that CRPD was meant to interpret obligations connected with existing rights as they pertained to people with disabilities – as well as principles from disability rights advocacy, including the indispensability of close consultation shading towards leadership of people with disabilities.

[8] The CRPD Conference of States Parties meets every year in New York for three days, with civil society forum(s) beforehand. It is open to all states whether or not they have ratified the CRPD, and open to any non-governmental organizations that are accredited with UN ECOSOC or that become accredited to the COSP itself, which can be done by applying 6 weeks beforehand.

[9] UN Department of Economic and Social Affairs, in New York, is secretariat for the Conference of States Parties, and was secretariat for the Ad Hoc Committee. Its counterpart is the Office of the High Commissioner for Human Rights, in Geneva, which is secretariat for the Committee on the Rights of Persons with Disabilities (monitoring body for the CRPD, composed of independent experts). These are the two components of the UN secretariat that serve the CRPD.

[10] Center for the Human Rights of Users and Survivors of Psychiatry, founded in 2009, a US 501(c)3 nonprofit. CHRUSP conducts strategic advocacy in pursuit of legal capacity for all, an end to psychiatric commitment and forced interventions, and the availability of support that respects human rights and meets people’s expressed needs.

[11] European Disability Forum, a regional organization made up of national federations of DPOs and regional organizations including the European Network of (ex-)Users and Survivors of Psychiatry. A member of the EDF board at the time relevant decisions were made told me that it was discussed openly as a takeover of IDA.

[12] The old “IDA” as a gathering of the leadership of member organizations has been transformed into the IDA board. There is a significant difference between cooperating as independent organizations, and deputizing individuals to serve on the board of an organization that is a legal entity in its own right. Board members owe their primary duty to the organization on whose board they serve; and I am not aware of any attempt to clarify the priorities of loyalty for member organization representatives serving on the IDA board.

Bodily Autonomy and Embodied Personhood


This is an attempt at a more theoretical discussion of the relationship between legal capacity and the characterization of forced psychiatric interventions as torture, which also describes the intersectionality between feminism and survivor knowledge as a critical disability perspective and states a view of the essential categories of both.

Legal capacity

Legal capacity is constructed based on a concept of personhood that is disembodied, abstracted as mind in a mind-body duality that reflects the male self-concept and the denigration and subordination   of female bodies in particular.  Alternatively and in keeping with the feminist principle of using language that accurately reflects agency (who does what to whom), this is a concept of personhood that is based on men’s bodies and experiences, men’s taking of themselves as a paradigm of humanity, so that women are only admitted to personhood insofar as we are similar to men.  Our female bodies are outside this experience, female sexuality is conceived as being penetrated and the female body as having no definite boundaries, rather as always being permeable.  This was brought home to me clearly in considering restrictions on women’s right to terminate a pregnancy, which implicitly or explicitly invoke a separate personhood for the fetus within the woman’s body.  Women’s mysteries may well have a complex relationship to pregnancy and the creation of new life, to the intimacy of sexuality in which the body changes in how it relates to others – but that does not mean that our sovereignty over ourselves is questionable.  The concept of personhood in law and social custom needs to be based on women, in order to institute a regime of equality of the sexes and to stop rape.

Bodily autonomy

The construction of personhood as ideally disembodied and actually based on the hierarchy of gender that privileges male embodiment and necessarily diminishes female embodiment to rationalize and facilitate men’s extraction of resources from women, also discriminates against disabled people as such, so that disabled women are doubly discriminated.  This is what I was trying to convey with my work conceptualizing a prohibition on forced interventions aimed at correcting or alleviating an actual or perceived impairment.  This formulation draws on the right to bodily autonomy and the right to be different – i.e. to have a specifically embodied personhood and for that embodiment to be recognized as having its own integrity and claim to be worthy of respect and legal protection.  The right to be different resonates for disabled people beyond survivors of forced psychiatry, and this is an instance where our theory and practice develops an area that is relevant to disability rights as a whole.  I submit that it is also relevant to feminism, by bringing out, albeit implicitly when first introduced, the relationship between bodily autonomy and embodied personhood.

What is psychosocial disability?

Where does psychosocial disability, or madness, fit in this discussion?  Negations of negations, since it is and is not a thing of the body; in a sense our psyche is the analog to the body within personhood itself, that is a conditionality that is constantly changing and that we inhabit or embody as consciousness.  Breathing into the entirety of who we are, self-knowledge or self-knowing as an ongoing life project, occurs on the physical and psychic planes both, and they are often inseparable.  It is also the autonomous aspect of the body; the aspect of the body that wills, thinks, feels, chooses.  These complexities can illuminate the shift from the old paradigm to the new paradigm in legal capacity more accurately than the notion of different decision-making styles and the devaluation of those styles that are more emotional or intuitive.  The latter notion flattens and essentializes the sexist and disabling construction of legal capacity and reinforces rather than dismantles gender stereotypes and stereotypes about madness.


The concept of embodied personhood also helps to theoretically support the premise of equal criminal and civil responsibility.  There is nowhere to escape to outside the confines of oneself to separate consciousness from psyche or will from action; embodied personhood also states a relational premise about who we are, inevitably as all law concerns relations between human beings.  As embodied persons we have obligations to others, and we have further obligations when we harm them by acts or omissions.  It’s interesting to consider as a potential model for radical reformulation the approach to state responsibility under international law, which does not distinguish civil from criminal and while it acknowledges certain “circumstances precluding wrongfulness” does not invoke a concept of mens rea.  Maybe mens rea is not sacred, maybe it’s possible to negotiate repair or separation within a relational context rather than continue to use imprisonment as punishment, which reinforces the paradigm of authoritarianism which is gendered and racialized and disabling, among other inequalities.

(If we are continuing a punishment system I still maintain equal responsibility is necessary, ensuring mens rea and all other doctrines mitigating responsibility are inclusively designed, and that each person’s social circumstances are taken into account including issues of oppression and discrimination, in making a determination of liability.  In a restorative justice context, the community as a whole and individuals depending on their relationship to the circumstances may be asked to take responsibility; this would seem to be appropriate to a non-punishment system rather than an authoritarian imposition of punishment which then demands safeguards including the prohibition of collective punishment.)


The last piece of the CRPD framework from a survivor perspective, liberty, where does that fit?  I don’t think it has the same conceptual resonance as the others; rather it is more instrumental.  Watching a video from 2004, I recalled that the initial idea of why liberty is crucial is that it is about control over the body, of the embodied person.  When they can confine you they can also torture you; they can scrutinize and mock and defame and all the rest.  We might resist the incursion or infiltration of the subjected vision of ourselves into our own consciousness and self-concept, but our actions take place within that frame; it distorts our relations and places us in enforced relationship to others in a hierarchy that is meant to dominate and control us.  There is a restriction not just of the freedom of the body and the will, but of bodily autonomy as an expression of embodied personhood.  Forced relationships having the purpose of restricting our autonomy create an impossible conundrum affecting the ability to experience oneself as an embodied person with bodily autonomy, as a sovereign being in relation to sovereign others.  Although international law has not made the right to liberty as such absolute (e.g. criminal justice detention can be lawful), it is a significant step forward to recognize an absolute prohibition on detention based on actual or perceived psychosocial impairment or disability, as the Committee on the Rights of Persons with Disabilities has now done under CRPD Article 14.


I have tried in a very condensed way to unify the concepts of legal capacity, forced interventions as torture, and prohibition of disability-detention, that are key elements of survivor knowledge that are now enshrined in international law through the CRPD, through reference to a feminist analysis of embodied personhood and bodily autonomy.  There is more to be said on legal capacity and embodied personhood; e.g. the positionality of any person with respect to legal capacity and their experience of themselves as taking for granted their bodily autonomy and personhood or as a non-person or as having their personhood and autonomy repeatedly challenged, the ways in which this happens relationally and how the law currently enforces these differences and could potentially undermine and redress them.  I hope this short conceptual piece will deepen the community’s understanding of the underlying premises that are implicit in key elements of the CRPD and will also stimulate further development of the law of women’s human rights in a similar vein.