UN Convention on Disability - Ad Hoc 5
New York, January 24 - February 4 2005

Sylvia Caras

(This is one of a series of reports I’ve sent about the Treaty being drafted. See www.peoplewho.org/unittednations and www.peoplewho.org/documents for prior material. This report won’t make total sense by itself - I haven’t gone back to the beginning to explain all the initials and purposes.)

The east coast had a blizzard. The American Airlines website offered free flight changes to a day or two later and I didn’t think it all the way through to realizing I could have also left earlier, before the blizzard. So, I didn’t take the redeye Friday night, did take my scheduled flight at 7:45 Saturday morning, the last flight headed east to be allowed to leave San Francisco that day. All seemed well, we had only 30 minutes to go until at 3:30 the captain announced that Kennedy airport had closed and we were going to Boston. (Kennedy had had one plowed open runway and a plane skidded off the end of it, blocking the runway, hence closing the airport . I had anticipated lots of storm scenarios, but not a delay caused by another plane’s misfortunes.) Well Boston didn’t pan out since Logan had closed (my sister lives in Boston where we grew up; I was all set for an unscheduled visit) and our next choices were Dulles or Newark. We finally landed at Newark (which is actually closer to downtown Manhattan than Kennedy), waited while a gate was cleared for the plane, waited on board until baggage handling equipment was borrowed, waited for luggage, found the air train to the train to the city and suburbs was not running, the airport bus was not running, no car service or limo would accept a reservation, the shuttle busses to nearby hotels were not running, and there was a line for the few taxis, all of which refused to go to uptown Manhattan because the exits were blocked by snow. I was very very lucky to connect with a woman going to midtown (it turned out she had done some media work related to the Convention) and a driver willing to go there. He squeezed four of us and all our luggage into his car and we were all grateful. I got to my hotel about three hours after I thought I would and watched out the room window as snow accumulated. I’m staying within a half mile of the UN, $84 with a sink in the room and toilets and showers shared in the hall. A rate at the Helmsley was negotiated for $168 and many are staying there.

In the morning I walked carefully for ten blocks, on plowed slushy sidewalks and across mounds the plows left at intersection while light flurries accumulated just a bit more snow, to the planning meeting the International Disability Caucus held to organize and strategize for the coming two weeks.

About 35 people were there, reporting high interest in the Convention, more countries sending delegates, more NGO’s expected. The process of the meeting was respectful and inclusive. Meetings were scheduled to be around the 10 - 1 and 3 - 6 States Parties sessions, a 12 hour day from 8:30 AM including working lunches. A central issue is what to do if there is provisional agreement from the States Parties to a position with which the IDC disagrees - the unity of the caucus is its main strength - while that hold under pressure? It was suggested that depriving people of their legal capacity is civil death.

The sidewalks were slushy, the angled curb cuts very slippery, but it isn’t especially icy. Registration and photo id went very quickly this first morning, and the sessions resumed where they’d left off in the summer, painstakingly discussing every phrase, every noun, every adjective, moving very slowly, group editing. WNUSP and SCI and People Who are all represented plus a Hungarian and a Swedish user/survivor group.

Since no one else attended the 8:30 AM North American Region meeting I scheduled, I will continue as regional representative to the steering committee. Those meetings and the IDC meetings are usually led by one of the chairs of the 8 IDA organizations and sometimes others who are involved. I was pleased to be asked to chair our first meeting of this session, a combined steering committee and International Disability Caucus meeting. We were presented with talking points (lobbying sheets) that had been worked on the day before which noted the most important points of each Article, and examples, related to the issues of the treaty article with the States Parties would be about to discuss. There’s a core group who are working very long hours holding thoughtful discussions, drafting, photocopying, creating agendas, making sure there are diskettes in .txt or .htm for those who don’t read so their computer software can speak the words, and monitoring the AdHoc Committee delegate sessions.

People Who I have seen so far: from the WNUSP board - Alpha, Daniel, Chris, Gabor; from SCI - Celia, Myra, Kate; Jimmie Trevette and Jonas Dahl from RSMH in Sweden and Jimmie is part of the Swedish delegation, others - Amita. Chris Hansen is a user and a member of the New Zealand delegation. Their delegation meets each morning with New Zealand UN Ambassador McKay, who is also chairing the current "informal" discussions. So Chris is well placed to present arguments against unconsented interventions and is herself a good example of a user with a valued place in the community. Her presence and arguments have been invaluable! WNUSP has had responsibility for several articles in a row and people are working very hard. I was again asked to chair the morning IDC meetings. So People Who are visible and involved!

RI has changed its name from Rehabilitation International to Rights and Inclusion.

There was an afternoon presentation about Universal Design - there are many global variations of medical equipment and access requirements - even wheelchairs have different footprints and door width requirements vary.

There’s resistance from the delegates about the phrase "legal capacity" and the idea that everyone has it and can exercise it.

Treaty preambles are not binding so all concepts need to be clearly explained in the articles themselves.

I met Bob Grisham from a DC Center on Healthcare who is starting from some of the principles established in the ADA to argue for that kind of healthcare and access even for people without disabilities.

Generally the IDC comes to a consensus position thoughtfully but fairly easily, deferring to the disability group which is the primary stakeholder in the matter. Two questions are not yet resolved, sheltered workshops (which some feel might be some people’s only chance) and segregated education (which some deaf, deaf-blind, and blind prefer)

Tina is at her hotel with a cold but she and Gabor had worked out some materials and Gabor presented them to the group which approved them. In the meantime, others had apparently also been distressed at how the informals were going and McKay called for an afternoon plenary at which the NGO’s could speak about the work so far on Articles 7, 5, 8, 9, 10. Language and stereotype is also an issue - People Who have been referred to as brain-damaged and violent. The IDC convened at 1 to prepare for their 3 PM presentation which it was agreed Gabor and Amita would present the arguments about legal capacity and unconsented interventions. Stefan is a strong supporter of the position that everyone has legal capacity and the compromise position would be to not mention guardianship at all. The morning felt chaotic to me, and this is a stage meetings go through, when it feels it is all coming apart.

Amita crafted thoughtful comments about privacy which will be up for approval on Monday, Korea is concerned that the concept of "independence" is too solitary, doesn’t even allow for peer support.

There is so much work that needs doing all at once – reviewing the prior days sessions to see what needs attention, attending the current days session, preparing for the next session. The articles are being discussed in order. Coordinators who have taken responsibility for two articles in a row have too hard a task - there’s no way to get all that done.

The World Wide Web Consortium (w3.org) presented the World Accessibility Initiative. The presentation is online at www.w3.org/2005/Talks/0127slh-un.html .

The International Disability Alliance met all day Saturday. The meetings are mostly closed except to a representative and a second from each of the eight organizations. The chair, Venus Ilagan from DPI, had given me permission to come, to observe, and to speak about WSIS. There was some discussion about open versus closed meetings and the group agreed to adopt some procedures after lunch in closed session, as well as to discuss funding and the selection of a new chair. (The chair rotates alphabetically through the 8 agencies - it is WNUSP’s turn). Tina, whose cold was better, clarified several times that I was not there representing WNUSP, that Gabor was there in that role. A small committee was formed to prepare a statement for the November WSIS meeting in Tunis. I was added to the committee as a technical expert since I couldn’t participate via IDA (WNUSP). The Special Rapporteur has scheduled a Panel of Experts meeting in Amman March 18. The WNUSP representatives have not been finalized. IDA in the afternoon decided that they would hold partly open and partly closed meetings and that each organization could invite a few to the open portions.

The weather has warmed some and I was pleased to be able to leave at lunch time and wander up Fifth Avenue window-shopping. I even had a look at the new and quickly discontinued Sony notebook "U" series, 2 pounds, about a six" square screen, tiny font, full keyboard (folding).

I puzzled over a 16 digit counter, center numbers moving very fast, outermost numbers hardly moving, asked what it was counting, was told it was a 24 hour clock, finally figured out the the first eight digits were hh mm ss 10t/sec counting up to 23999999 and the last eight digits were 10th/sec ss mm hh counting down from 24 (minutes/hours left until 2400).

The city is full of energy and slush, residents tramping through icy puddles and over melting snow banks.

Since DPI is reporting brief daily updates and RI will produce a summary after these two weeks are over, I’m not even trying to capture the contents of the meetings - there is a lot happening often at the same time. The UN "Enable" web site will have content, a report from the facilitator, and some of the side-event presentations.

There was a lunch presentation urging countries to adopt signing as a language used by many deaf. (US recognizes signing via ADA)

Chairing has become more difficult and it is interesting to see how different people participate, how much time and space each wishes and how they repeat arguments/positions that have already been voiced. When I facilitate, I like to be strict about time. Some react to that as an unacceptable imposition and take the floor before their thoughts are clear - it is really a challenge to the chair’s authority or to anyone’s authority. Others become very succinct and cooperative. One of the several unagreed items is whether the IDC should urge a faster process. People from the developing world are eager, even desperate, to have the Convention in place so that their own countries can tailor laws that will be inclusive and accommodating. People from the developed world want to be slow and thorough, to ensure that the problems they know have already arisen from bad wording and bad legislation will not be replicated in the Treaty. Yesterday a compromise was agreed on to propose to Ambassador McKay to skip a certain phase of the upcoming process.

The IDC produced lots of lobbying sheets and documents and the UN once again provided computers, printers and copiers. Handicap International provided paper and a staff person and arranged the preliminary Sunday meeting.

I saw a mobile post office - a truck parked by the curb with a vending window at the side and a clerk dispensing stamps and other wares.

Eichler and Burke presented on identifying social hierarchies (gender, race, ability, ...) and eliminating them from research. WNUSP (Tina) sponsored this event. Some 25 attended, were very engaged in the discussion. I also had a fascinating side conversation about the intersections of freedom, responsibility, accountability, and duty/obligation.

The UN will be putting the position papers and the lobbying sheets of the IDC on their Enable web page.  The Caucus is encouraged to complete work on the materials several months in advance so that delegates have a chance to review.

3  more AdHoc's are anticipated, completion by the end of 2006.

My patience lapsed by 10 this morning and I hurt the feelings of a colleague without yet making amends, then got too angry at the hotel clerk when I found the bellman had misinformed me about the airport transfer logistics so that I was overcharged by $13 (they returned that difference) and then the skycap wisked my bag away before I had removed the straps ($30 or more to replace; not the first time this has happened; the strap gets caught in other bags and twists the attachment from the suitcase <sigh>.)   Anyhow, the weather is mild, I'm at the airport waiting for the plane, and already anticipating the next meeting in August and the email exchanges to prepare.