Summit on Human Rights and Disability

April 8, Washington, DC

Sylvia Caras, PhD

40 people are gathered in a meeting room at the National Council on Disability (NCD) on a cool gray DC day. (I went for a walk before the meeting. My laptop got so cold it wouldn’t boot for 45 minutes and all that time I was mentally burying the hard drive and shopping for a new laptop) Judi Chamberlin and Paolo del Vecchio are familiar faces. The goal of today’s meeting is to build the bridge between human rights advocates and disability rights advocates for common goals in one voice. There are a variety of disabilities represented here and many more than the stereotypical image of wheelchair user. I think there are only four wheelchairs in the room. There a signer for one person, and a person taking verbatim notes for one person, and a person with a braille notetaker a bit fatter and squarer than my laptop.

Marca Bristo, NCD chair, and Rae Unzicker’s admired friend, reminded us that NCD began its International Watch meetings two years ago and commissioned a white paper about holding a convention – the draft was in our packets but wasn’t discussed.

Rosangela Berman-Bieler, US International Council on Disabilities, described how, among other things, a UN convention will strengthen the US human rights agenda.

Eric Rosenthal, Mental Disability Rights International, underscored why this discussion is so important, told horror stories of disability rights abuses throughout the world. The very process of holding a UN Convention would educate, and created international rights consensus. The global disability and psychiatric rights abuses are appalling.

Janet Lord, Landmine Survivors Network, principal author, described the development of the white paper.

Holly Burkhalter, Physicians for Human Rights, in introducing the next speaker, the keynoter, spoke of conditions of confinement and society’s throw-aways and conditions of non-confinement, civil society.

Aryeh Neier, Open Society Institute: organizations were formed to deal with politically-motivated abuses and when those were ended now attend to a broad array of civil liberties issues - five basic categories: freedom of inquiry and expression; fairness and due process; privacy, right to be let alone; cruelty and punishments; non-exclusion on grounds of status, discrimination. Because those with mental disabilities are largely disorganized, are largely invisible, and suffer from stigma, they have the most difficulty getting on the agenda of the human rights groups. Judi, Paolo, and I are rolling our eyes as the speaker stresses how "the mentally disabled" can’t speak for ourselves.

Questions/Comments - Andy Imparato noted how much emphasis there’d been on mental disability and spoke to how it wasn’t valuable to separate out one disability from the others, Judi, seconded, noting it’s not that we survivors are silent, it’s that we are silenced, that those of us who speak out are dismissed as not representative. Aryeh, Eric countered. India, Indonesia, have no rights emphasis for people with mental disabilities. Psych survivors in Eastern Europe *are* organized.

How do we resource ourselves?

Sandwiches were provided for a brief lunch.

Panel about disability and the context:

Chair: Eric Rosenthal; Andy Imparato,, Kathy Martinez,, Kenneth Roth, Human Rights Watch, James Goldston, Open Society, Len Rubenstein, Physicians for Human Rights

Roth: Need to be prepared for US opposition and to be prepared to find consensus results inadequate. Need to include economic and social rights, distributive justice.

Rubinstein: advocacy must coincide with treaty provisions. Most successful advances/implementation have been when the public has been prepared, advocacy/education already in place.

Suggestion: CMHS can include disability inclusion in its diversity language for guidance for grant applicants and awardees, for contractors it uses, for hotels they hire, ...

From the floor: people-first language, or not, even a weak convention will educate/sensitize to the issues, regardless of the strength of the resulting document; can the US government be an ally (ADA+)?; a convention might make things worse; ...

Next steps- Cynthia Price Cohen, Steve Rickard, Eric Schwartz: you can never be too prepared; you need to know who your enemies are; examples from the success of treaty on the rights of a child; if you lose the US you may get a serious opponent and you lose the US as a partner in enforcement; sovereignty hysteria; must be bi-partisan; involve administration from the beginning, educate our own constituency, find senior public people who are invested; a threat to anyone’s rights is a threat to our rights; a threat to rights anywhere is a threat to rights everywhere; create streamlined reporting process; find friends of the President and the Secretary of State who are supporters of this convention - a casual phone call can make among them can make this happen; enlist other friendly governments; offer from PAHO to help, coordinate; ...

Justin Dart: democracy has not kept its promise; people with disabilities are still the oppressed of the oppressed; individualized self-determination has proven that life is a game that everyone can win, the sacred value of every individual human being, united in love we shall overcome.

There is not yet a follow-up plan. June 12 DC invitational forum is the next step. The US International Council on Disabilities (USICD) is establishing an email discussion. Information about it and documents and other information on the development of a UN Convention at: .

WFMH sent a support letter for this convention several months ago.

Mexico has some proposals from their government, and two delegates are here to present them. Mexico has already sponsored a UN resolution for this convention and hence Mexico is the chair of the ad-hoc convention committee - how can those in this room be involved? There will be a meeting in Mexico, an expert panel will be invited, around 18 specialists are covered, those who can cover their own expenses are also invited, first week of June. In July 29 - August 5, in NY, there will be a two week meeting of the committee, representatives of 120 countries, primarily government, unsure about NGO involvement, may be observors only. Mexico supports NGO review of document.

A UN press release says a bit more about resolution XXII

The meeting adjourned at 5:30 and was followed by a reception sponsored by the Embassy of Mexico at the National Press Club.

I was surrounded by sneezes, coughs and sniffles on the plane and at the meeting and now the man in front of me has reclined his seat so that his hacking cough feels way too close; I am drinking lots of fluids.

As I was closing my suitcase and getting ready to check-out, there was a power outage throughout the hotel. I contemplated bumping my luggage down 14 flights of stairs and calculated how long that might take. The power came on again about 15 minutes later, the elevators worked, and when I got to the lobby, I realized I had been pretty scared, all kinds of unpleasant scenarios dancing through my head. I took a few deep breaths in the taxi, and began to notice the cherry blossoms in full bloom.

At airport security, my laptop was processed with the mechanical sniffer to screen for explosives, I was asked to open it but not to turn it on, and its high cost, sleek design, and light weight were noted by the woman guard. I’m wrapping up these last details aloft, between Dallas-Fort Worth and San Jose.

This report has been disseminated to the iris email list, the wnusp list, the WFMH board list, the contact person at WHO for the Mental Health Report

Appreciations to CMHS; disseminating this report is part of my obligation related to their funding supplied after I was invited to represent People Who at this meeting.