Dear Senator Harkin,
My story is no doubt unlike the others you will hear. I tell a story of justice denied in the United States, which has the possibility of being redressed if the CRPD is ratified and fully implemented – without being encumbered by reservations or by declarations and understandings amounting to reservations. It is also a story of the awakening of hope in the world – led this time by other countries, not the United States – for a future we can all be proud of.
More years ago than I’d like to remember – in 1977 – I was taken abruptly from the street where I was walking towards a subway, and locked up in psychiatry. My parents instigated this on a pretext that I was “running away” from them. I was over eighteen. I was walking with my parents and was irritated with them because they had taken me to see a psychiatrist who had treated me like a case to be analyzed and not like a human being. He had doubtless advised them to have me committed during the time he spent with them alone.
This began my nightmare in life. I spent that night being “booked” – being transported, being held in one place and then in another, till finally in the wee hours I was admitted into Kings County in Brooklyn. It must have been full, because after shedding my clothes and putting on blue and white hospital gowns (back to front, front to back) I was taken to an unusually high bed in a room with two or three other women. I was crying the entire time from fear.
The next morning, I was told to get in line with the others for medication and I stammered a refusal, whereupon a nurse laughed and said, “We’ll see what you say tomorrow.” The threat implied in her voice, and the easy confidence, chilled me. Sometime that day I abandoned myself and began to see myself as they did: a crazy person who had no agency and no hope. Resistance was futile.
The drug finished the process of destructive despair that was taking place within me and remade me into something artificial; I no longer knew myself. I survived as a small voice inside myself, and in my somehow unshakeable optimism that let me survive and search for a way through.
There is more to the story but I will fast forward to the years from 2002 to the present, when I had the miraculous opportunity to be part of the drafting of the Convention on the Rights of Persons with Disabilities. This was a historical anomaly – a newly-made law school graduate and grass-roots activist shaping international law as the chief representative of a global organization called the World Network of Users and Survivors of Psychiatry. We erupted collectively with the whole disability community and UN member states – including the United States – in a four-year process of deliberation, seeking a visionary justice for all people with disabilities, including those like me, who are regarded as disabled by virtue of psychiatric labeling and thus count as persons with disabilities under the ADA as well as the CRPD and other UN standards.
The fulcrum of the so-called paradigm shift in the CRPD is Article 12 on legal capacity – one of the articles that WNUSP helped to shape along with Inclusion International, the organization representing people with intellectual disabilities and their families. Legal capacity became the fulcrum because we all realized that it was possible to distinguish between the support that a person might need to express his or her will and preferences, and the substitution of the person’s will that negates their independent personhood and their inherent dignity. Surrounding legal capacity were also Article 14 on the right to liberty and security of the person, which prohibits discriminatory deprivations of liberty based on disability including involuntary commitment in mental health facilities; and provisions on the right to respect for integrity of the person and the requirement of free and informed consent in health care services. These provisions separately and together prohibit violations of human rights like what happened to me in 1977.
The CRPD contains much more; it is a rich tapestry with many patterns that came together as a result of the interactions among different constituencies and sectors of people with disabilities, from NGOs like WNUSP and also those who were part of government delegations or consultations back home. Other provisions that WNUSP was involved in include the principle of individual autonomy including the freedom to make one’s own choices; the right to an adequate standard of living for oneself and one’s family; the right to choose where and with whom to live; the right to work including reasonable accommodation and an application of the principle of non-discrimination to all workplaces so that there are no exemptions allowing exploitative sheltered workshops.
Violations of all these rights that I have enumerated under the CRPD persist in the U.S., and many of them are upheld by and under U.S. law, including federal and state statutes and regulations and the interpretation of federal and state constitutions. The CRPD has a higher standard than our own laws, and under Article 4 of the CRPD the U.S. would be obligated to bring its own laws into compliance. Yet both the Administration and the Senate have encumbered the treaty with numerous reservations, understandings and declarations including a reservation with respect to matters governed by state law and a declaration that in light of the reservations, U.S. law fulfills or exceeds its obligations under the treaty.
My question to you is, how will the U.S. repair the wrongs that are being done to people with disabilities now and that will continue indefinitely so long as our laws are not changed? How will the U.S. take advantage of this opportunity for improvement presented by the CRPD? Or will our ratification, if it happens, only be a means to berate other countries whose standards in some area of human rights may fall below our own?
Let me tell you about some areas in which the U.S. could learn from work being done in other countries. Peru, India and Costa Rica are all ahead of us when it comes to CRPD implementation. Costa Rica has drafted a bill that is being considered in its parliament (though so far stalled), which would end the institution of legal incapacitation and guardianship and instead put in place a system to provide support for individual autonomy. India drafted a bill on the rights of persons with disabilities in a process of broad consultation with civil society, with strong input from disabled people’s organizations. Though not perfect, a version of this bill would have obligated the government to phase out civil commitment and to eliminate most forms of guardianship with the possibility that any individual who sought to be released from guardianship would find satisfaction. Unfortunately this bill was rewritten to take out the progressive positions and is no longer rights-based, but it was a start that we can hope will be revived, perhaps as a result of the interactive dialogue with the Committee on the Rights of Persons with Disabilities when India is reviewed. In Peru, the disability movement succeeding in putting a key provision in comprehensive disability rights legislation that called for revision of the Civil Code. In countries that follow a civil law system, in contrast to our own common law one inherited from England, the Civil Code is a foundational instrument that among other things contains provisions on legal capacity. Now that the Committee on the Rights of Persons with Disabilities has issued its General Comment No. 1 on Article 12 (equal recognition before the law), specifying the normative content and obligations on states related to legal capacity, Peruvians are poised to work on these reforms.
The U.S. cannot seek only to be a teacher and leader. It has to humbly acknowledge where it is failing, and where it can learn from other countries. In the disability world, the rights of people labeled with psychiatric disabilities are a shameful failing of the U.S. Despite a ground-breaking report issued by the National Council on Disability in January 2000, From Privileges to Rights: People Labeled with Psychiatric Disabilities Speak for Themselves, the U.S. has ceded its leadership role and ignored the call of the NCD to question involuntary commitment and forced treatment as “inherently suspect” and move towards a totally voluntary mental health system. Instead we have seen the growth of not only inpatient commitment but also outpatient commitment, fueled by hateful stereotypes of us as violent and uncontrollable – in effect as the “Other” that is continually invoked in order to justify greater repression that has an impact on everyone. In our case, the repression is muffled and sugar-coated by the silencing of our voices – both our stories and our resistance – so that the official story is one of help provided to those who unfortunately don’t know that they need it. Well, we are all familiar with this kind of paternalism – it is the face of colonialism towards indigenous peoples and it is the face of male domination of girls and women and transgender people. In disability, paternalism is making a last stand.
The CRPD can help us to educate people beyond this ignorance and fear. In its General Comment dealing with legal capacity, the Committee on the Rights of Persons with Disabilities decisively rejects paternalistic coercion or substitute decision-making, including the use of concepts like “mental capacity” or “unsoundness of mind” to deprive a person of the right to exercise legal capacity – including the right to decide about a medical treatment. Forced psychiatric treatment is recognized as a practice that causes considerable suffering and infringes the right to be free from torture and ill-treatment; the General Comment calls for abolition of laws and policies that allow this practice, including provisions found in mental health laws through the globe. Why will the U.S. stand outside this forward-looking blueprint for change?
We are in desperate need of healing as a society. The bipartisan bickering not only over the CRPD but over too many issues has masked a corporate takeover that seems to be nearly complete. Ordinary people are suffering both economically and socially as the scope for individual freedom narrows, along with the possibilities for living well. Unjust government intrusion into people’s lives and communities, especially the depredation against young men and women of color, is decimating the fabric of life and people’s ability to trust one another, while the power of government to do good by providing for social and economic needs is mistrusted and too often rejected, notwithstanding the Affordable Care Act.
The spate of psychiatric profiling that erupted into the national consciousness periodically over the past several years and then non-stop since December 2013, is unconscionable and amounts to sacrificing those who are deemed politically expendable, while satisfying a small group of pro-forced-treatment advocates who have been lying to the American government and public in order to promote a hate-filled agenda. Instead of catering to hatred, the U.S. should remember its mantle of non-discrimination and equal protection under the law, particularly for groups that are being targeted with slurs and with policies designed to make them even more vulnerable. The CRPD could also help us with this by the way; Article 8 on awareness raising calls for campaigns throughout society to foster respect for the rights and dignity of persons with disabilities, to combat stereotypes, prejudices and harmful practices against persons with disabilities in all aspects of life, to promote awareness of the capabilities and contributions of persons with disabilities, and to encourage the media to portray persons with disabilities in a manner consistent with the CRPD.
Senator Harkin and all those who are considering ratification of the CRPD: I will close by reminding you of a call put out during the CRPD negotiations by the International Disability Caucus, which called on the negotiating parties not to leave any persons with disabilities behind, but to have a “Convention for all.” We distributed this special issue of the IDC newsletter at a time when the rights of people labeled with psychiatric disabilities were in jeopardy during the negotiations. I am offering it now in the hope that it will again to create an inclusive consensus on the highest ground, as it did then.
International Disability Caucus Special Edition January 31, 2006
NOTHING ABOUT US WITHOUT US
Imagine if someone else was making decisions for you. They could decide to take you away, lock you up, not listen to you, give you medication, block you from doing your work and living your life with your body and mind the way they are.
WOULD YOU WANT THIS TO HAPPEN TO YOU?
- Wouldn’t you have the feeling that you have lost your dignity and want it back?
- Wouldn’t you feel your integrity has been violated?
- Wouldn’t you want to have support in making decisions without beingtaken over and to ask for help without being seen any the less for it?
- Wouldn’t you want to maintain your inherent dignity and be supported tomake your own decisions?
- Wouldn’t you want to retain your integrity and continue to be you?Would you want a Convention that allows forced interventions and does not respect your inherent dignity as a person?The principles established in this Convention are universal and will apply to all human beings, as much to you as to me.
Let us make a Convention for a world where we can all grow and develop with mutual support.
IMAGINE A CONVENTION FOR ALL
Do the right thing, Senator Harkin. Ratify the CRPD without the destructive RUDs and with a commitment to full implementation in the context of an international dialogue with the Committee on the Rights of Persons with Disabilities, with the disability movement(s) in other countries, and with U.S. civil society especially disabled people’s organizations, and including those of us who have fought for the CRPD and shaped it from its inception.
President, Center for the Human Rights of Users and Survivors of Psychiatry
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.
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