Second Ad Hoc Committee to consider proposals for a comprehensive and integral international convention to promote and protect the rights and dignity of persons with disabilities.

U N Convention on Human Rights and Disability

New York, June 16 - 17, 2003
Sylvia Caras, PhD

Daily summaries are available at and . I won’t duplicate those.

People Who whom I know who are present this first day: Tina Minkowitz, Neil Covatta, Myra Covary, Kate Millett, Karl Jensen, Gabor Gambos, Celia Brown, Janet Foner, as well as familiar faces from Quito and last year’s committee meeting.

Many people waiting in line to be credentialed and photographed for an identification badge - I hung mine around my neck around 11:30 - it took about 90 minutes to be processed and was a time to meet and greet. Meanwhile, the state delegates approved an agenda and adjourned for lunch. At one, Ambassador Gallegos, chair of the Committee, met with the Disabled People Organizations (DPO) where some 150 agreed to create a steering committee reflecting disabilities and geographic regions and a speakers’ list for making interventions. Gallegos emphasized that the DPOs be as coordinated as possible. We were so advised last year and the urging was now even stronger, with so many more people here. A significant number of countries support a convention.

The Committee reconvened at 3 and entering delegates were handed the Disability Bulletin which stated the goals for these two weeks that we agree that a convention should go forward, it should be on human rights convention, and there be a plan for the drafting. Perhaps half the states are represented, and the gallery is perhaps three/quarters full.

I heard Tunisia, Venezuela, and Thailand state they had a person with a disability in their state delegation and I see some wheelchairs in the area where the states sit.

Landmine Survivors Network hosted a reception at Lighthouse for the Blind - networking, wine, hors d’oeuvres. Judi Chamberlin stopped by and will return for the second week of meetings..

I arrived early the second day to check-in with Tina and was asked by a VIP UN staff person if the accommodations and arrangements were OK. I asserted what had been said many times yesterday that this room would be too small for the 9 AM Disability Caucus meeting. He gave me his name, phone extension and told me he would make other arrangements. By the time some 50 people gathered for the Disability Caucus, there was insufficient room for wheelchairs, standing room only for others, no transcribing and no room for the CART technology, ... However, as the meeting convened, the chair announced that she had been told that from tomorrow we could meet each day in the full meeting room from 9 AM until the 10 AM session starts. The Caucus spent a lot of logistical time deciding to rotate chairs, choosing one for today, and agreeing on the Steering Committee makeup - one member for each of the IDA members (Tina for WNUSP), one member from each of 6 regions (and separating North and Latin America), and, after some discussion, the suggestion was one member from LSN, CRI, and one representing those not otherwise represented, "the unaffiliated.". Those who aren’t included in any of those sectors will meet today to see how their voice should be heard. SCI feels it has issues, so far unspecified, that WNUSP isn’t representing, wants to also be part of IDA and on the Steering Committee, to better use their UN roster status. SCI will host an informal briefing for delegates about the issues - Celia and Janet will present and answer questions.

Experts: Cynthia Waddell, a user of hearing aids and a member of a California regional developmental disability council, used computer-projected slides in her presentation and highlighted, accessibility - barrier removal, reasonable accommodations, communication The segregation of people with disabilities has been perpetuated by the medical model - for instance the thinking that says: "I don’t see why we should build ramps; I don’t see any one using a wheel chair here."

Materials organized for the Commonwealth and Asia Pacific Region provide a good overview of the Convention process and background. The 30 pages are available at They remind us that it too ten years to draft the Convention on the Rights of the Child and both the Civil and Political Rights and the Economic, Social and Cultural Rights Conventions took over twenty years to draft.

About 30 agreed on a draft intervention asserting inclusion titled "Nothing about us without us"

which urged accessible information and meeting space, open meetings, pwd as experts. "Nothing about us without us" became the mantra, ending the formal interventions

The US representative (who self-identified as a parent of five, one a child with a disability) noted as he read his statement the many US advances for pwd and said given the complexity of the issues and the problems of enforcement that each state should go forward at home. (This reminds me of the New Freedom Commission recommendations that say to start at home and not wait for federal programs. S.) He said the US won’t become a party since this is largely a domestic mission. I heard this as quite negative and hoped the US wouldn’t actively obstruct, but then he closed by reading "We bless each and every one of you as you proceed."

The European Union feels there should be an expert group of 15-20 to draft – with expert defined later and inclusion of pwd a "detail" to work out. Kicki (World Blind Union) said "We are the owners of the issue." Latin America prefers a much broader way to gather input and draft.

The Office of the High Commissioner for Human Rights has a new web page:

UN staff are having logistical problems, didn’t expect so many people, didn’t expect 100 people in wheelchairs, ... Everyone has to be advance accredited, sponsoring organization, passport number,... I am not clear why the logistical surprise.

(I attended the California Protection and Advocacy board meeting and the CMHS SOCSI meeting and then returned to the UN.

Some travel bytes: The staff at the Marriott in New York specialize: knives for cutting open boxes are only at the business center, the men who carry luggage don’t hail taxis, the bellman, who can hail taxis and load and unload luggage from cars doesn’t take the bags into the hotel, the man who takes them in doesn’t take them up to the room (lots of tip expectations), there wasn’t a coffee maker in my room, the Marriott charges $32/hour for internet, and $3 to receive a fax. A GE alarm clock, set by the previous occupant and overlooked by me, rang at 4:45 AM. OK. After groping for my glasses, I spent five bleary minutes trying to figure out how to turn the alarm function off as it kept snoozing. I ended up unplugging it. The Westin in San Diego charges $20/hour for internet access in their Cybercafe - Kinko’s charges $12/hour. Many airports are requiring all passengers to remove shoes and walk through security in socks/barefoot. On one flight leg, AA staff was onboard checking to make sure each carry-on conformed to size regulations. I took the Acela from DC to NYC - perhaps a quarter of the passengers were talking on their cell phones. The whole 3+ hours. It wasn’t restful. As I listened to a mom soothing her child, a business man strategizing, a discussion of battering, ... I started thinking about private acts in public spaces and wondered what next. It seems interesting to me that on the one hand via HIPAA we are raising the privacy bar and on the other we are reframing what is suitable for being overheard in public space. In New York, the streets are alive 24/7, there is food on every corner - sidewalk vendors, small grocery stores, carry-out. Since supermarket shopping is a real challenge for me; my refrigerator shelves are empty before I make myself restock, I’m enjoying imagining what it would be like to have so many other options. As I walked from the UN to my hotel at 5:45 I watched people hailing cabs and the cabs not stopping and I wondered if that trying and failing, asking and being rejected, was part of how New Yorkers got toughened up.)

About 60 pwd in the caucus planned the day, interventions, during a 90 minute meeting. There was a continual background buzz of translations and consultations but private noise, not public noise like the cell phones on the train. There’s an undercurrent of concern that there be enough pwd in the proposed working group to draft a convention and that within our subset or alloted slots that there be appropriate regional and disability diversity and inclusion (or not) or the human rights organizations.

Sone 25 met with the US delegation representatives for the Departments of State and Justice, voiced our desire for input and representation. The US position is to not sign treaties that provide rights without remedies, hence hasn’t signed the "holistic" treaties that assert social rights. This treaty process will take several years at best. The decision for the US non-involvement was made "at the highest levels" which I understood to mean not State, not Powell, not the Cabinet.

Perhaps 150 States, observed by 100 in the audience, spent several hours discussing a proposed "decision" about a Work Group. The composition proposed is 25 (changed to 27) from governments and 12 from NGO’s, amended to include one human rights organization. States are concerned about the balance between governments and NGO’s, even including NGO’s, geographic distribution, and the time lines of the whole process. Proposed are two five day meetings of the Work Group between now and the Third meeting of the Ad Hoc Committee. Israel’s intervention noted the importance of including in the Work Group people with psychiatric disabilities and cognitive disabilities. I regret I was unable to find the delegate herself to express my appreciation.

Thursday the States mostly met privately. At the same time, some 60 in the Disability Caucus, our Steering Committee and our Drafting Committee worked very hard all day to devise language for how the 12 seats we hope to have in the Work Group will be allocated and according to what criteria. It was decided that the Human Rights Institutions would have to negotiate for their own seats, to not allocate any of the 12 to them and to not even ask for 15 seats to allow three for them. One of the criteria is that a seat holder must by a person with a disability. This was agreed after discussion about including parents of people with intellectual disabilities and parents of people with multiple disabilities and parents of children. Zena Naditch, ED of IL P&A, noted that people with intellectual disabilities and cognitive impairments can represent themselves when given whatever supports they need. By 5:15 we agreed to circulate a draft draft to the State informal informals (yes, that *is* the language). Hessa, the Special Rapporteur, deliberately met with us all late in the session so that she could meet, she said, one to one with many of us first. (I thought that was an interesting way of beginning, first networking with the individuals. It seems to me to create hierarchy not inclusiveness. S.) She intends to complete the work started by her predecessor, and then set her own goals and decide who she will include as experts.

At lunch time I went upstairs to exit the building, to keep an appointment with a woman I met 30 years ago when we were both in Israel, and was told by guards that "for security reasons" I couldn’t exit from that door and needed to walk inside for the equivalent of three blocks, use the 42nd St exit and then walk back to 45th street where Fran and I had arranged to meet. While I was trying to get clear directions from the guards through the maze of corridors two delegates were also stopped but they asked the guard if they could use the nearer delegates’ exit, I asked the guard if I could go with them, he nodded and I scurried to follow them as they strode through doors and turns and corridors and stairs finally to the street. Where I saw fire engines and police and halted traffic and was told there was a bomb threat and I couldn’t wait where Fran and I had arranged. I crossed the street, stood watching with the crowds, wondered what to do, started pacing the block, met Kate and Myra and chatted for a bit and Fran found me. There was apparently no bomb. The UN was not evacuated, but no visitors were allowed in. I don’t know if those inside even knew what was happening.

Friday, this final day, started with a fire alarm at the UN which we were assured was a drill and we 60 pwd could retain our seats and continue with our work. There was a thoughtful strategic discussion about the Disability Caucus input about our suggestion for paragraphs to be included in a final resolution. There is considerable real time pressure - the work of the States is happening now, in smoke-filled corridors and in closed informal sessions. We are told there is considerable controversy about who can be on the working group and at what level they can participate and we hear that there is opposition to our inclusion as full participants, that stakeholders - providers, physicians - want also to have a say. A success, I think, is that there is no longer a discussion about "experts," instead it is Member States and NGO’s.

Gilda Brancato from State and representatives from the US Mission, Peggy, Carl Fox, Joe met with the US pwd. They explained that the National Security Council is the Inter-Agency coordinator because a treaty results in foreign policy. The US watches how the UN conducts its business and noted that when there are working groups, some States try to achieve things that they can’t achieve in other venues. The charge of the Working Group will be to prepare a working text, a composite, with bracketed options. The US feels the working group should be open to member States as observers.

At the final Steering Committee meeting a group of six was appointed to make recommendations for ongoing structure. CIR’s offer to be the Secretariat was accepted. Tina, as a Steering Commitee member, nominated me to be on that small committee and I am delighted to accept and like to organize structures and processes. Some of the others are Maria-Veronica (CIR), Moira (DPI), Stefan (DPI?), Max? (WBU?).

The Drafting Committee prepared six bullets detailing suggestions for paragraphs to be in included in the final resolution, covering comprehensiveness, principles, non-discrimination, fulfilling rights, diversity, and monitoring.

The Ad Hoc Committee reconvened at 5:40. The chair announced that there was 20 minutes of translation left and some States would refuse to participate without translation (this also happened last year.) Business only started at 5:50. A draft resolution has been put forward which the Disability Caucus has seen the prior version of and it is acceptable. As well as the text version, the Chair announced several late-breaking modifications. All these final documents will be soon available on the web. Several states are asking questions mostly around sufficient representation from the developing world. And about what accreditation means (one of the specifics of the draft) and who that means can come. But my concern is that the States objecting are trying to run out the clock, like a filibuster. The period of 5- 16 January, 2004 is proposed for the meeting of the Working Group. The delegates who are disagreeing are holding consultations and the Chair has asked them to conclude. The Special Rapporteur is addressing the Assembly (and using up translation time - more of which is being negotiated). It is now 6:25 - the Chair is begging for the disagreeing delegations to accept the resolutions. Cuba is now saying, well, yes, but ... The Chair is asking for, but not as precedent setting - there is a very large concern here about precedent, for instance that including NGO’s as equals at the table will set precedent - to continue without translation, in English, and begging the delegations to pass the Decision and the Report to the General Assembly. He then informs us the translators have to go, and, at the same time, the sound system got turned off and there is no one to turn it on again. Apparently the translators and the sound are linked. Delegates have agreed to nevertheless go forward and are now speaking without amplification. The items pass by consensus (without an actual vote). Convention.Yes has been a bumper sticker on the back of the wheel chairs. Convention.Yes is what has been agreed!

Tina, Judi, and Gabor stayed to plan next steps but I went back to my hotel to organize for my 9 AM Saturday flight back to California. As WNUSP UN Representative, Tina has worked long and hard over this past year and during these two weeks. Because of her work, the human rights of people with psychiatric disabilities, of all people with disabilities, of all people will be better protected.