There are a number of abbreviations below; I’m assuming most of you are tracking the UN work and know the initials and saving myself some typing time. If the initials are new to you, try putting the initials into a search engine. See internationaldisabilityalliance.org for the 8 IDA groups.

Sixth meeting of the AdHoc Committee on a Convention on Human Rights and Disability

Sylvia Caras, PhD
New York, August 1 - 12

Brief daily highlights will be posted by DPI each next day, and RI will also post some material somewhat later. Links and Convention background material are at peoplewho.org; scroll down to UN. These notes here are only impressions and anecdotes.

My alarm rang at 3 AM, I dozed and caught up with reading on the flight, the plane landed at 4:15 and I was in my hotel room by 6:45 PM. I was delighted to receive a complimentary upgrade to a room with a private shower and toilet, with even less floor and counter space than the room had chosen last time with only a sink. I did manage to figure out how to organize and put everything away while the room air conditioning unit cooled from the 80 degrees outside. I look out across an interior courtyard directly into the opposite room and listen to the noise of room air conditioners from every room amplified in that courtyard.

Sunday the International Disability Caucus (IDC) held a preliminary meeting to get organized for these two weeks. Much of the work had been done by email and the in-person group ratified mostly smoothly. Newly decided were four more seats on the steering committee, one representing women, one girls and boys, one to represent indigenous people, and one for Handicap International. Also introduced was how to deal with the just released Office of the High Commissioner for Human Rights (OHCR) analysis of legal capacity and person before the law which concludes that legal capacity is found no where else in international law and that capacity to act can be limited or restricted. The impact of this is that the analysis permits guardianship and it permits medical intervention without the individual’s consent, two concepts that the IDC feels people with disabilities should be protected from. This was discussed a great deal at AdHoc5 and not resolved in a way that the IDC found congruent. This OHCR report will be perceived as an authoritative analysis to help the delegates move forward but my non-legal reading of its 21 pages is that its intent is to deprive some people of legal capacity, people who cannot exercise rights "without the assistance of a third party appointed in accordance with the procedural safeguards established by law." But this last is what isn’t working and why a Convention is needed, so all this analysis seems to me ultimately circular. Quinn Rossander used to refer to the "mental death" system; this sometime deprivation of capacity, for instance for "unsound mind," will create for People Who "civil death."

I had been asked in advance by email to chair this preliminary meeting and was then asked by the group to continue chairing for the next two weeks. I’m pleased that facilitating the process is my contribution to the Convention work, and counting my pennies since I had only partial funding for the last meeting and none for this meeting and am wondering to myself whether I will wish to continue allocating my own resources in this way.

I stopped at the market to buy a salad for supper and there were Amita and Daniel, next morning at Starbucks, Janet and Kathy, in the hotel lobby Silvia and Gidion. The UN registration process started at 8:30, was well organized, everything worked, once were were admitted there were new fast, fast computers available in to us, and I deleted most of three days of email.

There are 400 people from NGOs registered for this session, and, thanks to Tomas’ request, we will be able to use the full delegates conference room for the IDC daily morning sessions. That room was full of State delegates and observers as the session began this morning. The Chair, Ambassador McKay from New Zealand, reminded the delegates of the costs to the NGOs of attending these sessions, and urged the plenary to move forward as quickly as possible. He proposed an ambitious agenda, and there is much buzz about trying to finish the treaty in 2006. He created time for the NGOs to intervene each morning and afternoon and also said he might invite various of the pwd as well to assist as experts. He noted that "forced institutionalization is a deprivation of liberty" and reminded the delegates of the motto "Nothing About Us Without Us."

The US provided a two page document with references and links titled "Living Independently and Being Included in the Community: Relevant US Law" (about Olmstead implementation as well as other laws/actions) and I introduced myself to the US delegation and told them how appreciated the technical support was.

I think close to 100 people attended the first meeting of the IDC plenary Tuesday morning. Some 35 attended a lunch time women’s meeting. The US NCD and the US based MDRI also held a lunch time side event. New Zealand and the EU are two that take the position that "all" means "all" and there is no need for separate convention articles on women with disabilities or on children with disabilities especially since there are already related conventions, CEDAW and CRC. Advocates think otherwise, so this may be one of the issues left to resolve, along with legal capacity, and whether parents may opt out of inclusive education for their children (deaf, blind, deaf/blind options find value in their special schools.) It’s in the 90's outside, and muggy.

Non-government Organizations (NGOs) have been allowed considerable time to intervene, and the Chair is most welcoming of the input of Disabled Person’s Organizations (DPOs). The education article had 87 interventions from States and about a dozen from NGOs and DPOs. The chair’s summary was supportive and broad and there seemed broad agreement that education must be inclusive while as while providing communication skills to those who are blind, deaf/blind, deaf or have other special communication needs.

The IDC plenary and steering committees are working well, the tone is both respectful and passionate.

It’s cooled done some. City buildings often have delivery elevator chutes whose doors open into the sidewalk. As I was walking from my hotel to the UN I was looking down and watching the head and shoulders of a person holding a hose and washing down the sidewalk while the rest of him was below street level - an odd image.

I also noted New York truck delivery practices. The east-west streets are mostly alternately one-way, with parking on both sides, so there is one lane in use. Trucks just stop, deliverers do their tasks, traffic backs up around the corner for those trying to make a turn and across the street because even when the light changes there is no where to go and sometimes, but not too often they "block the box." And drivers seem to expect this and are fairly patient. Pedestrians weave through this traffic at the intersections, very aware of the walk signals and traffic flow.

In London, there are some restaurants that have no lighting. The waiters are blind and read the menus. The sighted patrons cope. The blind patrons are fine.

This first week there has been strong lobbying for the inclusion of an article on women, not just a mention in the preamble, and words throughout about various aspects of women’s concerns. Three from Germany came to the Ad Hoc for the first time and orchestrated this, holding a caucus and a side event, creating a seat on the IDC steering committee for women, and making announcements that kept consciousness raised.

Even though the heat has broken, it feels to me the pressure level at the UN has risen. I and others were feeling close to snapping because of so many demands in so many directions for so much information! However, two went out for a walk and ice cream, I took this noon break to type my notes, and many will have a chance to relax over the weekend. We are not sure whether the states will really allow the DPOs to continue participating so there is an urgency to get everything said.

New York cabbies are taking "courtesy" hospitality classes, being taught how to implement that the customer is always right, to ensure their cabs are clean, being given recommendations about personal grooming, .... I’ve been watching the New York station news as I get ready in the mornings, for the weather and the sense of what’s happening here in the city.

Chair McKay in his summaries to the delegates as each article closed mentioned various IDC interventions, named particular IDC groups like WFD, WBU, and State delegations are quoting from the text the IDC has prepared. So the hard work is having considerable impact, but as McKay notes all the time, nothing is decided until everything is decided.

There were no fundamental disagreements about the article on accessibility.

South Africa is considered a developing country.

I had whitefish salad and a bagel at a deli and shared my table with an Israeli who wanted to know what my disability was and showed me his Israeli disability identification card.

Over the weekend I kept going to meetings. On Saturday, reporting on issues around the right to communicate and WSIS, and on Sunday representing WNUSP as an alternate, discussing the international concerns of DPOs. Two women wearing perfume hugged me and I became very confused. It took until after lunch for my head to clear.

Today, the start of week two, some 60 - 70 people attended the morning IDC meeting. There is talk of no inclusion of pwd in the next meetings, of two three week meetings and three two week meetings (New York in January, Vienna in June, New York in August). Or an intersessional "technical" meeting. As well, there will be a "Chair’s text" released probably by the end of the month. I would expect this to be favorable to pwd - McKay has been understanding of the issues and supportive.

Several of the leaders here have an entourage, a cluster of people who move together, meeting and greeting and conferring.

I have felt a kindred connection with people from the some of the Arab countries. I felt both humbled and honored to be asked, and accepted an invitation to be an honorary board member of the Egyptian disability organization NAS and to confer and give suggestions about including all disabilities in their work.

Several countries are arguing for a much briefer treaty text, arguing that lists of what is covered or included may be used to limit rights and may become outdated.

We had 75 - 80 at the morning IDC meeting. The Chair came to speak to us, it is looking like two three week meetings next year, in January and August. Space at the UN is tight, and we require the largest of the meeting rooms! He is planning to prepare a draft text based on the working group text but integrated, removing overlaps, a text as a whole. He feels it will take three weeks to review it and that it should be reviewed as a whole in one session. He urges the NGO interventions for that session to be focused and cautions that he might become autocratic in limiting them. He plans recommending a roll-over of the annex that allows NGO participation. If there is an intersessional meeting, it would not be at the UN (no space?), still would be transparent, on technical matters, not matters political, and not matters where there is not agreement.

My daughter is living in New York and stopped by my hotel to visit and bring me some things. We joined five others in the elevator, pressed three, the door closed, reached three, and wouldn’t open. A man became quite panicky, pounding on the door, trying to pry it open, interfering with finding the alarm. We pressed the alarm bell, which activates a speaker system to hotel staff, explained the problem, they sent an engineer who had trouble prying the door open. That’s when the real anxiety set in, but we were at the floor and level, and they did pry the door open and the heat in the elevator car wasn’t too awful and we had to insist the anxious man not help from the inside and stay out of the way of the crow bar. It all didn’t take many minutes but it did feel long! I’m taking the stairs for the next few days.

My daughter and I had lunch and visited, the weather stays hot and muggy, promising showers and thunder storms which haven’t yet happened, but I am carry an umbrella and plastic raincoat with me every day.

I’ve been on the California Protection & Advocacy board for four years and was President 2002 - 2004. I learned from the prior Presidents whom I watched and from the staff skills at chairing and how to be sensitive to the variety of accommodations needed to ensure full inclusion of each board member. Those lessons served me well as I chaired the New York meetings.

It took a while to discover that the UN computers available for us to use have a keyboard encoding that for Yahoo at least, requires using the rightmost numeric keypad, with NumLock on, to enter digits in the password field.

There is discussion about how (and whether) to include public health concepts in the health article. Public health concepts about community health, clean water, ... are valuable. But public health words like prevention (which when applied to People Who has become pre-symptomatic intervention, drugging those with a family history of schizophrenia before they even display a symptom, and early-intervention has become distorted for People Who by diagnosing toddlers with bipolar disorder and medicating them and by inserting mental health diagnoses and medications into primary school. So what should be a good, isn’t. As well, a good public health intervention for pwd would be to look at inter-personal violence, incest, sexual abuse, battering, ... That’s not even spoken of. So the current plan is to talk about community health but not "public health" and re-craft the language and ideas towards dissemination of information and healthcare for all.

Thunderstorms and occasional showers have been predicted almost every day and I have carried an umbrella, but haven’t opened it once.

I’m watching the news as I type this last Friday morning. Several unions are on strike at Heathrow and British Air has canceled or diverted all incoming and outgoing flights. So far 20, 000 passengers are stranded. The New York news is also highlighting the mess at Kennedy that the cancellations have caused. I am thinking of those here in New York who might have been flying BA this afternoon or tomorrow and hoping that my flights tomorrow don’t leave from a terminal where all those people are waiting.

Some pwd reported visa hassles for US, not getting papers ‘til last minute, ...

As has happened at each New York meeting, the interpersonal issues come to a head in the middle of the second week, when there isn’t time to really resolve them. Sometimes a sure-to-fail strategy is adopted to the issue is raised, tension is created, but no resolution can be achieved and the person can maintain a position of chip-on-the-shoulder disrespect. This led into the unpleasant ending of the last meeting.

I had given my word that we would vacate the conference room by 9:45 so that the State delegates could take their seats. As we got close to time I reminded that we had 12 minutes left, then 9, 5, ... and that I would like a minute for myself for thank you’s. However, one person started speaking at 9:43, the timer bell I had set rang at 9:45, I interrupted and adjourned the meeting, he was enraged, kept talking, yelling, said this was a North-South issue, a language issue, a key figure admonished me and said just five more minutes, I insisted I had given my word, we were in the seats of delegates, I repeated that the meeting was adjourned, and I left. Some others left, some stayed. I don’t really know if he kept talking I had such a rush of discomfort. I was so shaken by his rage, at the disrespect to the UN, to the delegates, to me personally. I don’t recover easily from strong emotional exchanges. Many after came up to me, said I’d done the right thing, that I’d chaired well during the time we were there. And I too felt, feel I acted correctly. I was really fortunate later, while doing my email, to be sitting next to Daniel Iga, from Uganda, another WNUSP member. He reminded me that sometimes leaders need to be firm, even inflexible and in continuing to talk with him about what had happened I realized that in those last two minutes I could have, as chair, not recognized this last speaker, overridden the other key figure, given my closing appreciations, and adjourned. I could also have taken it on myself to just delete the last agenda item, sum it up myself, allow no comment, and adjourn. So my lesson is about claiming enough personal authority and learning that sometimes that is appropriate, not bossy, not imperious, but required by the situation. I’m still feeling sad about this. I’d rehearsed such a gracious closing. So another lessons is that I don’t always get to be gracious and charming!

I woke before the alarm on Saturday, dressed slowly, decided to just leave early for the airport, just missed the twice an hour express bus and waited in the air-conditioned Starbucks, sipping tea.  It was 9 AM and already in the 90's, one lane of the tunnel was blocked off, a stalled vehicle was being towed.   I had printed out boarding passes, and at curbside when I went to leave my suitcase, I was told my flight had been canceled.  I was glad I was early, discovered I had been rebooked through Los Angeles, was given an exit row seat, and I put my name on the airport sticker upgrade list, went through a traveler-hostile security screening system where one had to mange the plastic tubs for shoes and computers and one's carry-on's from the table to the rollers for the luggage xray  and then from the rollers to somewhere to put everything back together, used the waiting time to do some email, and boarded to find that the exit row favor was not such a favor - the seat was directly at the galley, noise and activity the whole flight.  I took a few deep breaths, settled in, until a gentlemen had a boarding pass for the same seat number.  The upgrade had cleared, I moved all my stuff forward, had smoked salmon and a salad and vanilla ice cream with chocolate sauce, read Wired, arrived on time at LAX and the plane waited 30 minutes for a gate, and am now at the separate Eagle terminal waiting for the final flight to board in about 45 minutes.  I have the laptop plugged in and am sitting on the floor and beside me is another traveler computer in his lap, leaning against the wall.

 

 www.peoplewho.org