Ad Hoc 4 (and SOCSI)

New York, August 23 – September 4, 2004

NGO – non government organization

DPO – disabled people’s organization

UN - United Nations

SOCSI – Subcommittee on Consumer/Survivor Issues

Sylvia Caras, PhD

A smooth and easy flight avoided local thunderstorms and landed on time at 5:15 PM. Then a long wait for baggage and a bus and hotel shuttle led me to check in at 8 PM. I’m settled and organized in my small room in my budget hotel half a mile from the UN.

I brought my detachable A drive so I would have I/O capacity in my room but it didn’t survive the trip, turns on but won’t recognize disks <sigh>.

Sunday is clear and comfortably warm and as I walked to the Disability Caucus meeting I enjoyed street fairs on Madison and on 3rd, a bagel, and a view of New York’s first tall building, the triangular Flatiron Building, 12 stories. There were about four dozen people with disabilities, facilitators and allies gathered for this fourth meeting to draft a Convention on human rights and disability. There is a concern that Non-Government Organizations will not be allowed to be as active, speak from the floor, even observe, and strategies were discussed about what options we had, how best to use the draft text of the first 15 Convention articles that the Caucus had drafted, and what other political resources we had. Processes and procedures will be one of the first items on the Monday Ad Hoc Committee full session agenda.

The very careful preliminary UN accreditation and registration process was bypassed Monday – the database had been deleted and any one who was in line to get in had their name typed in, … but slowly! Celia Brown and I tried to arrange for display tables for the cemetery restoration materials she was featuring. We asked a guard, who directed us to call the movers. The extension he gave us didn’t answer, the operator connected us to Transportation, then FMD she thought (but didn’t know what the letters meant (Facilities Management I guessed), we then asked another guard we phoned for us, to yes, the Movers and tables were brought.

It seems to me there are more in delegate seats and fewer in observer seats. The proposal being negotiated is that NGO’s will be allowed to speak for the first week but only observe and not speak/intervene the second week. At the lunch break, about 80 people from NGO’s met with representatives from the European Union to hear the EU point of view and for the EU to hear that of the DPO’s. The UN generally works by consensus, not vote. Informal negotiations, public or private, lead to consensus decisions. An opaque process. Votes identify who has which position and could polarize. As well, once at the UN meeting, it is too late to change delegate instructions. People with disabilities must lobby in the State capitols in advance of the Ad Hoc meetings.

The above compromise was agreed by consensus, and will apply to future Ad Hoc Committee discussion covering all the articles to date. Participation week one, observe week two. The plan is to have written position papers for week two. We were also reminded that the NGO participation for this Convention has been far ahead of any other UN meeting, and some discussion of whether the UN was an organization of States or people.

People with disabilities in Japan have been working well; the interventions by the Japanese delegate supported the DPO positions, used the language preferred by the DPO’s.

The Disability Caucus has a steering committee, the eight IDA groups, seven regions, one slot for those otherwise not included, and two human rights seats. I was selected to be the North America representative.

I was asked why US groups, ADAPT, … aren’t more involved. I had to say I didn’t think the Convention was a high US priority. But there will be a person with a disability as part of the delegation. She is Commissioner Developmental Disabilities, HHS.

The participation compromise is apparently flexible and we’ve been advised to not lock ourselves into any oppositional position. However, it is also possible there will be closed sessions next week.

The Disability Caucus met at 9 and some 50 people made decisions about strategy, speaking with one voice, who would be giving the interventions for which articles.

It’s interesting to me to watch different styles of chairing, how much the chair intervenes, makes comments, takes a position, facilitates. It’s amazing to me how much ground we cover!

During the 1 – 3 lunch break there are many side events. Japan organized one on reasonable accommodation today that I went to part of. Gerald Quinn spoke about what reasonable accommodation is, that it is not brand new in the history of international documents, and its place in the convention. Then I went to the Steering Committee, caught up with my email on the UN computers, and bought a salad to eat in my room. It’s still cool in New York and not humid.

The question was raised about why the Convention uses the word "inclusion" and civil rights documents use the word "integration" and whether there is a difference. Also that the word self-determination, that the caucus draft uses, has a different meaning in international law. But "autonomy" seems to contradict the interdependence of affiliation cultures. CMS uses self-direction for some of its programs that allow recipients to direct the cash of their own benefits.

35 members of the Disability Caucus agreed to coordinate better with the human rights organizations.

The US held a briefing, attended by about 40, about civic access for people with disabilities. Also there was UN Mission member Peggy Kerry, who has a family resemblance to her brother, John Kerry.

Some staff are required to use the visitors entrance which is supposed to open at 8. Yesterday the security screeners weren’t ready and the gate opened at 8:10, today at 8:07. Stressed employees 10 minutes late to work were cell-ing their supervisors, explaining, fuming.

The Steering Committee agreed to keep asserting the moral authority of the Disability Caucus and developed a list of member organizations to distribute.

Ambassador McKay, NZ, will be coordinating the next week. He met with two dozen of the Caucus to talk about how the informals would go. He urged the Caucus to negotiate with the states and work toward consensus and noted that if there were an unnegotiable disagreement, the interests of the states would trump.

The US held a briefing for US NGO’s. There were a few observers, someone from Physicians for Human Rights, two from Landmines, three from the Disability Caucus and 10 people from right-to-life-united-family-protection-of the-unborn organizations (Right to Life, United Families, Heal, …), 25 in the room. The US has responded to the advocacy of the latter and today intervened supporting the positions of the Holy See (I don’t know what those positions are), and has changed its participation position. The US still believes that national laws are the best way to ensure rights for people with disabilities, the US will offer technical assistance based on our experience with the ADA, there is no US intent to ratify this disability convention – this has not changed – and, new, the US will participate more, has a compelling interest and will intervene on articles 2, general principles; 6, statistics and data collection; 7, equality and non-discrimination; 8, right to life; 14, respect for privacy; 21, 23, 26. It was stated by one of the NGO speakers that the Disability Caucus has no interest in the quality of life of pwd, doesn’t care if pwd receive medical care, are allowed to starve and die – these are the right to life arguments. Patricia Morrissey wanted to not sacrifice the wonderful expansiveness of the treaty and urged the concept of progressive realization.

The upcoming challenge will be how prescriptive to get; the definition section could set the scope (give examples if the words don’t seem clear). Several US disability leaders were here today, presenting at a side event, and are concerned about the change in US strategy which has been dishonest with the US disability community and wondering whether to lobby, attend meetings, intervene, … I was asked by several people where the US groups were, where was ADAPT, … It’s not clear whether now is the time for US disability advocacy. And there are is now one bureaucrat but no people from the disability groups included in the US delegation, not even the NCD chair. Input will be received by if you would like to comment. Be aware that State Department policies appear set by the White House not the Congress.

I woke the next day, having reflected some, feeling fearful, and was reminded of the same invisibility I perceive when I am with strong advocates for right to control and treat. There is a narrow focus which denies choice and imposes its own set of beliefs, a righteousness that rolls over opposition. It reminded me of terrorist tactics, forcing an issue no matter who else might get hurt, fundamentally disrespectful of diversity.

My mood shifted some, this the first day of my second week here, when I was greeted at Starbucks with "Good morning, the usual?"" Wow, a week, and here I am a regular. I was chatting with a man wearing a Vietnam Veterans cap, career military retired, who can never forgive Kerry for his anti-war activities, will vote for Bush and was proud to describe how he convinced his ABBB mother in Florida of his point of view as well.

I was an observer at the IDA meetings, where Tina and Janet represented WNUSP, and I spoke about my interest, work to date, in the Information Society (WSIS) meetings. The meeting was held at the Broadway hotel, in a long narrow hot dark room with a noisy ineffective AC. All who participated deserve kudos for putting the work first.

Judy Heumann and others at the World Bank are arguing that disability is a legitimate issue on the economic development agenda. I heard new language, contrasting developing versus industrial countries.

I walked by Madison Square Garden, barricades already beginning to be in place, strong police presence, a few protest T shirts, hotel signs welcoming the Republican delegates.

Sunday I enjoyed an exhibit of Modigliani’s elongated portraits and sculptures and turned in early to catch a 5:30 AM train to DC for my final SOCSI meeting. My term expires November 30, as does Jon Brock’s and Sharon Yokote’s so there will be three vacancies advertised. Recommendations were made about self-direction, paid peer support for trauma services outside of the MedicAid funding stream, ensuring the inclusion of sexual and other abuse when trauma is discussed.

NYPD mobilized extra security for Amtrak northeast corridor trains - Penn Station is at Madison Square Garden, site of the Republican Convention. Departing, there were blocked streets and an ID request when boarding, arriving at Union Station in DC I saw a long line waiting to board the return train. Leaving the next afternoon I was able easily to change my ticket to an earlier train (reservations were required this week), was asked for ID when I boarded, and, at Newark, police boarded and walked through the train. All bags were required to be close to their owners and tagged with identification. Exiting to 7th Avenue, the side walks were full of people barricaded from the street, traffic was halted to allow a cavalcade of busses to come down 33rd and turn on 6th, I wheeled my suitcase down to Madison before I saw traffic that was actually moving and was able to get a taxi.

I’ve been disconnected from the UN work the last few days and not sure how early the Caucus is meeting or whether, whether there will be closed sessions today, … I’ll walk down to see and at least be able to use the UN computers and see what’s in my email.

There are still 40 of us here at the 9 AM Caucus meeting. The briefing on the disability positions for the delegates that the Caucus provided yesterday was well received.

It’s quite amazing to watch the Caucus process – translators for Arabic, Spanish, signing; note taking in Braille; for the hard of hearing, a facilitator passing around a portable microphone to each speakers; a variety of wheel chairs. The UN has provided computers with printers and internet access, a copy machine, and two dedicated meeting rooms.

The theme of International Disability Day December 3 is Nothing About Us Without Us.

Some of us met with UN officials to request better accessibility for the AdHoc meetings and input for the planned new building. For the new building, I mentioned degassing, new materials in new buildings, environmental illness and multiple chemical sensitivities. I was told there is an ISO standard written after the US ADA which includes ei/mcs. For accommodations, people asked for spare wheelchairs, more power outlets especially for the computers of people who are blind. There is no money, it costs $400 to install another electric outlet, there isn’t enough power in the UN system to even supply extension cords, and there are no spare parts for the old UN electric system. Once it goes down, it’s finished.

I walked up 46th Street to 5th and started uptown on 5th and the sidewalks were barricaded, streets clogged with police cars and fire trucks, pedestrians weren’t allowed to walk by. I saw no disturbances, don’t know what was going on, found later that Bush and his party were staying at the nearby Waldorf Astoria.

32 attending the Disability Caucus meeting again discussed the timing of the Convention process. There is speculation that there may be an agenda from some States to slow down the Convention by hair-splitting over words. LSN urges that now is the time for political will, to lobby States, to advocate 24/7. Several groups are not comfortable with too much speed. A compromise position was discussed and a paper will be drafted to circulate, encouraging emphasis on a quality produce to be realized within 3 years. (Chair’s goal was 9/2005). The Caucus must create a better process of coordination, continue with the individual article working groups. A proposal was made to prepare a bottom-line list of non-negotiables.

The delegates met in "informals," and analyzed articles word by word. This afternoon they were in the middle of Article 7 (of, at the moment, 25). I took a break and went out for ice cream and lunch and when I came back they were still in the middle of Article 7.

It has not rained at all here in New York, has been cool for the season with only a couple of hot days not even too humid, and in DC there were only dinner time sprinkles.

There are still 20 members of the Caucus here on this last afternoon, and Chair Gallegos came to speak with us, to urge us to lobby our countries about our positions and about contributing to the UN Voluntary Fund so those from developing countries can attend. He pointed out that even if the Convention were completed by the September ’05 Millennium Plus Five UN event, by the time it was ratified and monitoring put in place it would be 2010, more than 30 years since it was first proposed. He would prefer no more delay. As for translation, it takes from four months to a year to translate UN documents into the five official languages. The plenary was reconvened, the report adopted, AdHoc 5 is proposed for January. The Third Committee, intersessionally, will decide on how many meetings can be fit into the UN schedule, considering resources, room availability, translating facilities, … I think many of the people who are still here will be at the next meeting, which it is proposed will continue working on Articles 1 – 15 only. That may mean no NGO interventions, only informals, as happened this meeting during the second week.