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.

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