Anecdotal report and New York City impressions (long)

UN Human Rights and Disability Meeting, New York City, July 29 - August

Sylvia Caras. PhD

I found out on July 27 that, through WFMH, I could be accredited for this meeting, and was able, with the help of some frequent fliers, to get a plane ticket, and with the guidance of Nancy Wallace, to find a modest nearby hotel. To be economical, I chose a room with shared showers in the hall (CMHS refused funding) and it is indeed spartan, and adequate. Amenities are two tiny soaps, a pen, and a pad of phone note paper, very different from the Marriots and Hiltons were many conferences are held. I shared a cab in from the airport with a raw foods expert from Hawaii on his way to present in Buffalo. We talked about yoga, hemp clothes, fasting, and the state of the world.

So here I am in New York City, where I haven’t been for 20 years. I went for a walk yesterday evening after I settled in and was interested in the evening street activity, the 24 hour gourmet grocery stores. Today I saw early morning street life, an outdoor market, apparently daily, with cut fruit, bread, cheese and other groceries. Then I went to the UN NGO (non-governmental organization) office to get accredited, had to wait 45 minutes for the authorized staff person to arrive, after that it took 10 minutes since WFMH, an official NGO, had already sent in my name, for a pass to be printed which I then took across the street to the pass office, was Polaroided, given a driver’s license size badge and a neck chain, waited in line with some tourists to go through airport style security where the buckles on my sandals set off the alarm as I walked through. The guard looked me up and down, saw no place in my short sleeved summer dress for contraband, saw the tiny bit of metal in the shoe straps, and waived me on.

I was in the public lobby, exhibits, gift shop, lots of people - none of which I explored - and I showed my badge to the guard at the entrance to the meeting rooms, found Conference 1, and soon Tina Minkowitz and then Celia Brown arrived and a few familiar faces from the larger disability world.

There is a daily bulletin summarizing prior days activities and each country that presents has a printed statement too that circulates. I’ve previously posted several URL’s where you might find this information, particularly on the disability sites of the UN and From the bulletin, there were 100 countries represented on day one, Chile, Mexico, Denmark (for the EU), .Croatia and Norway spoke. There is not yet clarification of the role of disability groups (NGO’s). I don’t know who the US delegates are. SCI and WFMH held a mental health caucus on day one.

According to the Landmines Survivors Network notes, there were 50 - 75 states present on day two and 9 states, 1 IGO and 5 NGO’s spoke.

Here am I on day three, there look to be about 100 people in the room, Celia has just spoken, a joint statement prepared by SCI and WFMH, Tina Minkowitz’ credential to speak is being questioned because she mentioned WNUSP which is not an accredited NGO and she may only speak as a representative of Madre, which accredited her I’m siting next to Rosemary Marinaro, and Tina is now speaking the material she prepared for WNUSP to present in Mexico. The subject of NGO participation is on the floor. EU says broad NGO inclusion; US (Kate Gorove) says "expert" panels; NO and AU support EU. Iran asks for more time to review documents that they have just received. Another country notes that the material has been available for months. (This kind of delaying was expected by the countries known to oppose: Egypt (and the rest of the Arab world?), China, US, Canada - a fascinating coalition). I had lunch with Nancy at the UN cafeteria - wide array of quality food at modest prices, and later coffee with Nancy and Celia at the café selling hip-widening luscious looking pastries. Other pwd here that I recognize: Richard Light, DAA; Joelle Balfe, NCD; William Kennedy Smith. The morning meetings are from 10 - 1, afternoon, 3 - 6. Things start late. The discussion continues about the extent of NGO participation. Gorove stalls, Chair, from Ecuador, neatly rebuts - there has been los of time to review material and delegates have come prepared. The plenary attempts to develop a chronology for the rest of the two weeks.


Thursday: 4 issues raised by EU

.Friday: AM: overreaching principles, rights, states obligations; PM: political rights also Monday morning

Monday: equality in economic, social, and cultural rights PM and Tuesday morning

Tuesday: PM: expert panel discussion

Wednesday: third generation rights

Thursday: recommendations

Friday: develop recommendations and report to the General Assembly

Canada wants to review entire program, reflect on entire work, take a break, also solve NGO participation first. Mexico wants to spend Thursday discussing the Mexican proposal. US: moves to suspend meeting for 30 minutes and without vote the meeting is suspended. PWD decided to appeal to the chair to override the stalling, phrased diplomatically, and Richard, Joelle, Nancy and others wrote a brief statement. The meeting reconvened, there was more stalling, the chair announced that it was after 6 and the translators must leave and he would proceed as best he could. France immediately called a point of order and said there could be no proceedings or decisions without translation and the chair immediately adjourned the meeting.


Smoking is not allowed in the meeting rooms, and is permitted in the corridors and restaurants. I’m not liking the smells.

I’ve been told that a person named Karen, a US West Coast person with a psychiatric disability, participated in the development of the UN MI Principles and that she is active now. If anyone knows who this is, please let me know.

The disability caucus met, agreed on a longer appeal that Richard had drafted over night, spent considerable time approving, and got it to the Chair midday. What I learned is that because of our approval and accommodation process, we should keep our statements very very short and focused.

The 3PM session is reconvening now at 3:20. So far today there’s been jockeying for position, a closed session, a meeting for the pwd groups with a UN human rights person who explained some about process and a meeting with the European Union to get us all on the same page. The disability caucus held a strategy session this morning, two dozen people, drafted a statement for the Chair appealing for NGO participation and the pwd here alerted their networks. Tina and I sent some email alerts out.

Mexico and Denmark/EU created a participation proposal which was passed by consensus, sparse attendance, immediately. Success: NGO’s may attend any public meeting, make statements, if limited time by diverse representatives, receive documents and submit written presentations (which are not official documents) as well as make material available to delegations, and that none of this creates a General Assembly precedent. This seems good.

Judith Heumann, new disability policy advisor to the World Bank is now here.

Discussion issue one: why a legally binding document? No one spoke against a legally binding document, but it is known that there is opposition

There’s a man sitting with the disability groups whose card says Japanese Families of the Mentally Ill. He doesn’t speak much English and I speak no Japanese so we mostly nodded and smiled.

Friday morning:

Tina has done a top notch job representing WNUSP, becoming linked to the rights groups and people, suggesting wordings, ... Rosary too has been working hard, and ordered some NAMWM buttons from MPLA which we hope will come on Monday.

Discussion: which existing documents/treaties/... will be included/background/...

US doesn’t want *all* the Standard Rules to be included, that a Convention and the Standard Rules can exist side by side.

Others, including pwd support them.

Meeting adjourns at 11:30 to reconvene this afternoon. I browsed the UN gift shop; sent postcards to my granddaughter from the UN post office (stamps cost a bit more, can only be mailed from here, are UN franked); and visited the lobby gallery. There’s a wonderful exhibit of toys children have made with found objects, bottle caps, phone wire, wood scraps, printed cardboard from boxes, wrapping paper. There’s also an exhibit of 34,000 3"x3" tiles made by children, more at "Children are the most powerful source to see our future." Now the disability caucus is meeting with the UN Ad Hoc Committee Chair and next will meet with Canada.

We are being asked for specific input, to focus, to educate, to be precise, and to not repeat the general statements, to name the important civil and political rights, the economic and social rights. Coordinate among ourselves, specify one speaker, name our experts on particular subjects, do not repeat. As a diplomat, you learn to say yes and no at the same time. Our job is to do our job, to raise consciousness, to educate. We need to point out the deficiencies. We also must coordinate with NGO’s who are not here.

Members are asking for accommodations: computers, real time transcripts, electronic versions of handouts, ... (There’s no transcription of informal meetings.) Joelle says not an ADA violation because UN is not on US soil but an international soil (like an embassy?).

The Canadian delegate met with the disability caucus to discuss the impression we had that Canada was joining the US in stonewalling. Until the very end, I had the impression that I was hearing double-speak: the process must be transparent, except when we suspend and go into closed session; principles are easy and get nowhere - it’s all in dealing and compromising and giving up elements; Canada didn’t have time to review the materials. Finally, in the last few minutes he explained what he meant when he kept saying we didn’t have time to review - the latest version of the Mexican proposal was released a few weeks ago. What I understood is that since Canada is a federation and since each province must be consulted, a few weeks is not enough time. He also cautioned to beware of wonderful statements by States that don’t cost much/anything. Canada, he said is committed to a good product, actions.

Pwd will be considered experts and one will be part of the expert introduction of each topic.

Afternoon session: over-arching principles. Sparse attendance. Principles from Mexican proposal were introduced. Expert from office of UN High Commissioner for Human Rights made comments, mentioned affirmative action and reasonable accommodation, gave example that psychiatric disability should not be exceptionalized but folded in. Surinam introduced language of differently-abled. (It’s 4 PM and I’ve just become aware that in three full days I have not yet heard the word stigma. I’m not sure I’ve even heard the word treatment. What a refreshing relief!). Denmark for the European Union: dignity, self-determination, return power to the persons by eliminating barriers, social justice.

It’s very hard to follow who is speaking to see the speaker in such a large room, the chair calls on a country, their microphone is turned on and lit, they are seated alphabetically, but I can only see a few of the name tags from the guest area.

US: long-standing advocate for pwd, well-conceived instrument, condemn discrimination on the basis of disability, pursue eliminating discrimination, take concrete steps, we envision a narrowly crafted instrument building on existing ones, a few short preambular paragraphs, define disability per ADA consistent with US law, definition must not include environmental, cultural or social factors. (No idea if environmental as used this way means excluding chemical sensitivities. People might like to do some actions around that issue since many people with psychiatric disabilities also have chemical sensitivities. NCIL has materials, a committee on this subject. S.) Chair: Please provide us with ADA; I have no personal knowledge.

Chile: not enough to have general principles; Convention must be specific; there must be legal entitlement. There must be a social and cultural dimension. Norway: build on existing conventions. Respond to the US comment on definition - social model. Australia - analysis of implementation of existing instruments. South Africa supports European Union statement, including "Nothing About Us Without Us." Does not align with the US.

I took the Metro (made at least four mistakes, wrong stops, ...) to the hole at the former World Trade Center. It looks like a very large construction site, surrounded by hawkers, and one memorial wall. I think the visitors bring the tribute with them; it didn’t seem to me to be there. Except for the first thing I saw when I walked up the subway stairs and looked around - a very tall building, draped in black, with a red/white/blue sign high up in the middle of one side. It’s a federal building under repair, and the black netting is customary not symbolic a guard told me, but the image I had of a building wearing mourning crepe will stay with me. On the subway back, at the 42nd Street stop I caught a glimpse of a party as the train doors opened and closed - singing, instruments, music. I stopped at a 24 hour take out food store to get supper. They seem to be on most every corner, this one had hot and cold buffets, an amazing array, I was must struck by a breakfast combo - yogurt, granola crunch, fresh cut up fruit, stacked atop each other and packaged for a meal. It seems people stop on the way home often to get supper for one. No cooking. No weekly grocery shopping. I decided to unplug my computer and charge the battery in the morning because there was lots and lots of thunder and lightning starting at 8:30. I wondered what happens to electronic room keys and locks when the power goes out. But it didn’t.


The first half of the meeting of the International Disability Alliance was open and I attended. I spent an hour strollling down Fifth Avenue around 8 AM, noting both the activity and energy and the concrete ugliness and noise, cars, fumes, jack hammers, stopping to wait in line at Starbucks for tea and to use up a $5 introductory Starbucks card I received in the mail. Member organizations of IDA, one international group per disability: Disabled Peoples International, Inclusion International, Rehabilitation International, World Blind Union, World Federation fo the Deaf, World Network of Users and Survivors of Psychiatry.

Judi, Tina and Rosary were there, 4 interpreters, about 18 people, all appeared Caucasian except for James, a UN delegate from Uganda, and primarily European. All leaders, mostly cooperative and aware of the diverse issues of the different disabilities and the need for a common front. Eric Rosenthal (MDRI) previewed his report on human rights violations in Kosovo which is to be released 8/7. A director of an institution, when asked about inmate rape, said there are "voluntary or involuntary" girlfriends. An acronym new to me, DPO, Disabled Persons Organizations, might be better to begin using than NGO, since NGO includes stakeholders who are not pwd. Judith Heumann presented about her role at the World Bank. Disability groups are encouraged to engage actively, request formal meetings with World Bank staff in your country/region, notifying Judy ahead of time and reporting results afterward. Visit on the left, under Topics, select Disability. Go to Documents On-Line and then to World Bank Documents.

Then there was discussion about whether to generate a Convention ourselves or encourage the UN Secretariat to do it. The meeting broke for lunch and when it resumed it was only for the IDA delegates. I walked back up Fifth Avenue, went into a shoe store and a high fashion store, saw an exhibit at the American Crafts Museum. The sidewalks were very crowded, lots and lots of language, folks chatting on their cell phones blocking the walking flow by not attending to sharing the sidewalk, hot dogs and pretzels, ...

I turned on the TV and without a remote stood beside it changing channels and came to Justin Dart’s 7/26 memorial. Familiar faces of People Who: Russell Pierce, Jean Campbell, Judi Chamberlin, Dan Fisher, Andy Imparato.

Judi and I are both early risers and we had bagels and cream cheese together and then took the bus to Soho, saw the new Prada building interior, and enjoyed the street vendors. I went on to Lincoln Center, Central Park, more of Fifth Avenue, and supper with a New York woman I met in Jerusalem when I lived there for 10 months in the early 80's.


Disability caucus: Rosary distributed "Nothing About Me Without Me" buttons courtesy of the Alliance. The discussion was strategic, procedural

Morning session: civil and political rights

Stefan introduced the statements agreed in Mexico, Mexico and Chile spoke, and Tina, Richard, Kicki. Lots of the issues of people with psychiatric disabilities (pwpd) are enfolded in all the comments. Tina has done especially wonderful work making that happen. Morning session adjourned at 11:10.

Disability caucus meeting with the European delegation. 55 people. Kate Millet and Myra Kovary are here, Neil Cavuto, Jim Rye, Judi Chamberlin. Meeting with US delegation that Rosary arranged: we got a better sense of the UN position and objections that made sense when they were explained and I still would like to hear the other side. I don’t feel trusting. Kate Gorove is in the Legal Advisor’s Office and teaches at George Washington University. Eric Rozan is with the State Department mission in NY. There were 11 pwd there, 8 were People Who. Gorove thinks the Convention should elaborate on what non-discrimination is and what equality is and give examples. The US, she said, wants a Convention the US can ratify, a definition of disability consistent with US law. The delegation is usually lawyers and to enlarge it to include pwd would break precedent, this isn’t a world conference but an ad hoc committee. Since we have plenty of lawyers with disabilities and People Who lawyers (Tina, Ron Thompson, Andy Imparato, Ted Chabasinski come immediately to mind), people could start lobbying the White House to be included. Rosary is drafting a letter to Colin Powell which Kate promised to hand-carry. She advised to CC: Bill Wood, Assistant Secretary for International Affairs. The US will be holding an Inter-Agency meeting. She expects DOJ to be the lead. Tina intervened and it was agreed that NCD would be a key resource. Other agencies HHS, DOE. It seems to me that we should be sure we have input at DOJ, since Kate thinks that agency would be lead. And we need to be sure SAMHSA includes us in the HHS input.

Disability caucus draft suggestions for final report - two that apply in particular to the issues of People Who: "Explicit validation that the rights and protections provided by existing human rights instruments apply, without exception, to all persons with disabilities and that any subsequent Convention contains specific reference to these existing norms." (Thus, as I understand it, it would be an international human rights violation to have separate discrimination for People Who, special laws about forced treatment, ... ) "The authority of the Convention must be clearly established so that it has recognized precedence over other UN instruments pertaining to disability that were developed earlier and may have outdated or conflicting concepts or weaker provisions." (This neatly invalidates the MI Principles which People Who are against. S.)

Discussion: economic and social rights

EU responded immediately to request for accessible communications by today providing diskettes. Norway mentioned "survivors of psychiatry" and I grinned! The US is against segregating on the basis of disability (Does that mean no more psych hospitals or mental health centers?)

World Deaf Federation: Why is a defect more important than the human rights of all people with disabilities?

Tina: for People Who, civic, political, economic, social and cultural rights are all five interwoven.

Tina articulates nicely that only people with psychiatric disabilities are subject to preventive detention based on their diagnosis of disability, so that diagnosis is a precursor to the intervention and therefore it is discriminatory because it is special treatment based on disability.


Disability caucus: two pages of input for recommendations for a convention were agreed, and made available to delegates. A proposal to establish an international DPO campaign group was circulated, but not yet discussed.

Morning session: Chile: accessibility, inclusion, resources. Over-arching principles: respect and dignity (collective responsibility), equality, non-discrimination, self-representation. Rights are universal, indivisible, inter-dependent and inter-related. Japan is on the verge of drafting an independent living law. "The Japanese government is of the view that any affirmative or positive measures it has undertaken domestically to facilitate the participation of people with disabilities in society are in accord with the concept of equality between persons with and without disabilities. They should not be regarded as discrimination against persons with disabilities." Rosary spoke powerfully, mentioned people of color, that the MI Principles are unacceptable to People Who, gave anecdotal testimony and some of her own story. Judi noted there must be the clear and unequivocal inclusion of people with psychiatric disabilities.

But we were advised to not personalize. I think we should still use the power of the anecdote. At the beginning of Rosary’s testimony the delegates were captivated with what she was describing that we are all so familiar with, handcuffs, eviction while hosptialized, ...

Disability Negotiations Bulletin, I:6, p 1: The persistent marginalization of disability as a human rights concern within the work of human rights organizations highlights the essential need to secure a place for disability issues to be monitored and considered by all organizations committed to the promotion of human rights. Contact Amnesty International, Human Rights Watch, Lawyers Committee for Human Rights, ... to get support for this Convention. Ask them to consider how their work relates to the rights of people with disabilities.

The Norwegian delegate met with the disability caucus and assured us of their support.

Afternoon session: Briefing introduction by acting chair: "We are in the process of making history. Quinn: to move from a welfare model to a rights model, "full visibility in law and in society." Four values: dignity, autonomy, equality, solidarity.

I am at Kennedy airport, sitting on a bench in front of a phone that has a shelf and an electric outlet for the computer. I’m early for my plane and just finishing up these notes, and by now the bench is feeling very hard <smile>.