Americas regional seminar and workshop on norms and standards related to the rights of persons with disabilities.

Quito, Ecuador, 9 - 11 April, 2003

Sylvia Caras, PhD

Declaration of Quito

NGO statement

I got up at 2:30 AM to leave at 4 for the airport for the first of the three flights to Quito. The first flight left an hour late and by speed walking from one terminal to the next at Dallas I just made my second connection. In Miami I was able to stroll for about 15 minutes, was startled to see an employee indoors on a bicycle - yes, the connector distances are that long. At the gate I was pleased to see four people I’d met last year at the first Convention meetings I attended. We arrived on time in Quito and already at Customs I felt the disadvantage of knowing no Spanish - I wasn’t sure which line to wait in. I was surprised to see the drivers who had been prearranged to pick-up passengers allowed between the plane exit and customs/immigration, not required to wait on the other side. Baggage was unloaded on two separate carousels. I kept looking from one to the other and finally recognized the bright ribbon I’ve tied to the handle of my checked bag. Everyone so far has been extremely friendly and helpful and the communication is rudimentary. I faced a real challenge when I found scented toilet paper so perfumed it pervaded my room and triggered a headache I can usually avoid by removing scented products. I ultimately realized there were tissues available and I left the perfumed rolls outside my door and in the morning used gestures to get several more boxes and explain.

Quito is at 9,600 feet, nestled in even higher mountains, and there is a nearby historic monument at the Center of the World. The sidewalks around my hotel are cobbled with I-bar shaped blocks. The cobbles and the altitude slow my walking. I’ve signed up for a sightseeing tour which took four others to the highest point, 10,000 feet, to several wonderful views, and then walked us through the old city to see the reconstruction of several churches. Ecuador is 85% Catholic. People stop in to church for a few minutes throughout the day. Quito is 7 km wide and 70 km wide. Homes are pasted to the almost vertical valley slopes like a Colorform project. I wandered through the crafts market near my hotel, alleys lined with stalls selling many alpaca shawls, and other crafts and carvings.

The next day, the 9 AM meeting started at 9:40 as 200 stood for the national anthem of Ecuador. We are assembled in the very cold ballroom of the upscale swissotel Quito hotel with several hundred accessible guest rooms. Around a central triangle are seated some 30 state representatives. From the US is Ruth Katz from the HHS research Office of Disability and Aging. Behind two legs of the equilateral triangle are three rows of seats for observers, perhaps 40. At the back of the room are three columns of tables for the NGO’s, I’d guess 75 people, with name tags for each seat. People Who and Disabled People International both were translated as OMPD (organization/world (mundial)/people/disability) The representative from Peru has a sign translator. There are wheel chairs, including the representative from Venezuela. There are a number of people who are blind. I am listening to the open remarks wearing mammoth earphones for translation, sitting next to Steve Estey from DPI and Shelley, his Vancouver Island translator, who is using a steno machine and computer with very large font. All this technology also attracted the cameras and for a few minutes the were bright bright lights so that the captioning could be captured. One row back are Kathy Guernsey, Janet Lord, and Elaine B from Landmine Survivors Network, and behind them, Tina from WNUSP, translated as Red Mundial de Usuarios y Sobrevivientes de Psiquiatria (RMUSP=WNUSP). There is an invitation to a reception this evening and each registrant received a three ring notebook printed with a map of the Americas containing an agenda and six documents. The organizers have provided a room full of Internet-connected computers for the use of the delegates. I took advantage of this, since I arrived quite early, to send an email to Karl Jensen at WNUSP commenting on a paper he’d sent me just before I left.

Sign language is recognized as a language in the constitution of Ecuador.

At 10:10 there was a break for coffee - the exit was blocked by three cameras and microphones and a crowd of a dozen waiting to interview the Ecuadoran officials. Coffee, mint tea, colas, meat empanadas and elegant looking chocolate balls and lots of people smoking. 2/3 did not return to the meeting.

The delegates have elected a person from Ecuador to chair, be president of the meeting. One delegate noted that Ecuador is a port of entry for this sort of work of human rights and disability rights, and there were comments on the excellent organization of the meeting. The three vice-presidencies (I think chairing the three work groups) will be one from each of the three regions. The group adjourns so the delegates can confer with each other to select these vice-presidents.

Carribean delegates absent because of last evening air traffic problems.

Gallegos: What is a disability? Solution to pervasive issues. How to live together. Those countries who can’t sign, please accompany and work in parallel in your own country. For definition, use visible v invisible, inductive v deductive, .... (DPI - postpone definition ‘til end of long process.) Written law must be respected, and enforced. Stakeholders used to be governments; now NGO’s and public at large. Since Asian and African regional meetings were postponed, their input won’t be available in time for June. Find unifying factors, achieve consensus. Middle way, compromise.

Mathieson, international relations, UN consultant expert, advocate for pwd, for women, about us without us?, must be realistic, NGO’s focus on violated rights but if we only focus on violations we will never get to a convention, we should not define new rights, no more no less than the in the international human rights documents, must continue within the existing framework, not whether pwd have rights but whether they can enjoy those rights, basing language on elements which already have a consensus. Agreement to go forward. No negotiation yet on text. June - agreement on type and scope. We must first overcome arguments against this convention ( preamble must rebut): 1. existing six conventions are enough, just enforce and mainstream (women’s movement mobilized public support for theirs); 2. standard rules are enough as long as they are updated; 3. too difficult for States to implement, States won’t sign (migrant worker convention); utopic. First argument most important. I was very glad I heard Matieson’s arguments and style in person. I think there is a defeatist tone to his advocacy, what was will be. It seems to me this is a time of social change, a time of creating new. I’m not sure whether depending only on the original UN rights document is adequate.

Each country will give 10 minute presentation for the rest of this morning. Next the NGO’s will present. Costa Rica requests delegate seating be changed from alphabetic to regional. This was agreed and the rearrangement will happen during the lunch break.

Three work groups - all will address recommendations for the 7th instrument, each vice-president will chair one of the working groups.

El Salvador: Feb 2003 access standards enacted. Government, non-government and pwd all participate. (War has created disability.) Employment: affirmative -1/25 of all employees (per business?) must be pwd.

Cuba: social justice and inclusion for pwd, full integration of people with inabilities, integrated equitable manner, endorse Vienna declaration.

Panama: children, family, youth - conscious-raising, hearing impaired doing arts and crafts, retarded child raising chickens

Peru: delegate shared time with two representatives, four year old law establishes legal protective system, as well as 7th article of current Peruvian constitution. National council of pwd. Tax benefits and incentives for sheltered workshops. 55% poor; 45% extremely poor; national commission on disabilities, Internet forum, special education, mental health community clinic,

Delegates, despite reminders from the chair, are going way over ten minute limit.

There was a 90 minute lunch break. Some of the disability NGO’s stayed to try to coordinate the afternoon interventions. About 20 caucaused. William Smith chaired, pointed out that the delegates are not high-level, don’t have decision making authority.. 8 groups had signed up to intervene. There was an unwillingness to relinquish the individual time/space to an overall message, despite a request from Chair Gallegos for one document. Landmines and DPI will draft an overall statement which we here might all be able to sign and submit. I think we should start with appreciations of the work that many countries have already started and to the delegates who have come, and go on to cover a few key pro-active points: pwd are the experts and need to be part of the delegations, the concept of universal design, which is understood in Latin America - designo universal) makes society inclusive, maximizes human functioning. Others feel there is a need to argue against the three categories of objections Mathieson noted and to argue for the need for a convention.

Sheets of rain poured down prohibiting getting take out from the café Tina found around the corner. I tried to get a quick lunch but the café was a large buffet and noisy and crowded. The front desk helped me order from room service and chicken soup with rice and vegetables was delivered to my seat at the meeting just before it reconvened.. $9.15! I didn’t wear my headphones while I ate and I missed the intervention from Ecuador There are now 13 people at the delegates tables, about a dozen observer, and 50 sitting at the NGO tables.

Argentina is now speaking. Implementation of laws is slow.

Costa Rica: delegate uses a white cane, civilist position - applause - we don’t invest our revenue in the military, disability generates poverty, what is the UN willing to do for disabled persons? What about financing to reconstruct Iraq?

Mexico: supports broad inclusion of civil society, NGO’s, UN will collate; most challenges faced by pwd are social and cultural, convention must be broad and inclusive, must have a development perspective If all people with disabilities were put into one country, that country would be the third largest in the world.

Chile, Uruguay, Brazil, ... (I took a break, checked my email, chatted with Tina a bit and came back in to ...)

US: investments in special education in the community led to work and employment and accommodations as pwd graduated from schools. ADA Transportation. 70 % unemployment rate for pwd; biggest barrier is transportation. New Freedom Initiative. Assistive technology is not necessarily expensive. Litigation is a serious US issue that can impede progress. Inclusion - Nothing About Us Without Us.

All invited to cocktails, Ministry of Foreign Affairs, vehicles at 6:30. (I am going to just go back to my hotel. I am not staying where the meeting is; I cashed in reward points earned from prior stays and to save money, am staying at a hotel a mile away.)

Break - small meat and cheese sandwiches and a tray of fancy sweets, and hot and cold beverages.

Venezuela, Bolivia - representative of disability umbrella organization, uses a wheelchair, Nicaragua (delegate ill)

It is now 5:30. The meeting is scheduled to end at 6. The NGO’s have been limited to five minutes.

1. William Smith and Maria-Veronica Reina (wheelchair) (International Disability Rights Monitor): Overheads. 4 - 15 % of the world’s population are pwd, hundreds of millions of people. The issue is injustice, pwd aren’t being considered. Leadership from pwd themselves. Monitoring.

2. Luis ...(wheelchair), Costa Rica: Forum for human rights for pwd

3. Gladys Montalessa, Ecuador, Ministry of Labor, when God works, men sing; when men work, God sings

4. Rosangela Berman Beier (wheelchair), Brazil, Inter-American Institute of Disabilities created to influence and support civil society,  www.disabilityworld.org,

5. Henry, Columbia, National Federation of the Deaf, include signing, interpreting, this is other than "alternative communication" and must be explicitly included. He signed first, then used his voice to tell a familiar story to emphasize his point that we aren’t using the tools and conventions and laws that we already have and we must strengthen our disability institutions to demand our rights.

6. Stephen Estey (deaf, uses CART and speaks with voice), DPI, Sapporo Platform in support of the convention, new (excellent) position paper.

7. Janet Lord, Landmines Survivors Network, content of core human rights treaties don’t address common barriers to pwd to their enjoyment of full human rights; standard rules don’t cover non-discrimination and civil and political rights; implementation challenges can be overcome.

8. Tina, WNUSP, in Spanish!, explain user/survivor - use services of mental health, plus persons who reject/refuse but the services are imposed and they survive (experience has been negative) - human rights without limitation/discrimination, for instance community living in freedom, right to accept or reject treatment, some existing human rights instruments do not respect rights of pwd nor do some of the country laws. Definition of disability includes all disabilities; definition of discrimination includes all forms. Finally, pwd are the experts in our lives and affairs and we want full participation in our affairs.

9. Carlos, Columbia, blind; and I missed 10.

It was still raining and hard to get a taxi to return to my hotel where I removed two rolls of perfumed toilet paper from my room, reorganized, and read a mystery for a bit to quiet down. The Quito weather in what we think of as fall and spring is changeable - the same day can offer sun and warmth, cold and cloud, spatter drops of water, and walls of rain.

The suissotel, proud of its accessibility, has ramps instead of the several stairs that separate areas that are too steep for a wheelchair user, and staff are pushing chairs up and pulling them down.

Mexico was selected as Special Rapporteur for the overall meeting to enthusiastic support and applause.

Floyd Moss, Jamaica, was selected as vice-president of the English work group. Two other groups are being held in Spanish, without translation. There are about 20 in the room, from many countries. Cynthia Waddell is here as a consultant. She formerly managed accessibility for San Jose, CA. The charge for this group is to review a pre-seminar basic document. The introduction and preamble were read aloud and participants are now to commenting:

Moss: human rights issue, developmental approach

Lord: good extracting from original Mexican draft

Tina: social model, development

I was chatting with one of the translators, originally from New Mexico, who shared that he and many translators have ADD, and are good at simultaneous translation because they hyperfocus. We talked about labels and he said some things are like Rumpelstiltskin - give it a name and it goes away

The work group has now spent too much time deciding which document to start from. Convention Expert Cynthia Waddell moved we start from the Mexican document instead of the document provided. The Mexican document includes the MI Principles; the provided document excludes them. <sigh> Cynthia keeps invoking Roberts Rules formalities which are getting in the way of going forward. She is using that role to push the meeting in a direction she has chosen and comments on everything that others are saying, agreeing/disagreeing. The style of consulting/facilitating is an obstacle to including all the voices in the room. Finally, with 20 minutes left, we are going letter by letter. a to p, through each item of the Mexican preamble. We are now on item e which lists existing instruments and includes the MI Principles and are leaving them in and making a note that "not all international instruments" reflect current status ... - if I were a pro-biology advocate I would understand this as meaning more force needed, less choice We stopped for break at letter i and moved on after break to:

It was noted that we didn’t reach the issue of development in the preamble. and we are now rediscussing the preamble despite the instruction to move on to the articles. Quite a lot of a 10 page basic document was then read aloud; I’m not sure whether this was to accommodate the chair, who is blind. There are now 30 minutes left. The suggestion was made to put forward the most pressing issues instead of going point by point. The first comment is on the definition of disability, temporary v permanent, definition of "daily living." Canada: it is not the definition but eligibility criteria that is the issue. The suggestion was made to include families whenever pwd are mentioned.

Lunch break - 2:30 meeting reconvened at 3. Cynthia was handed the mike by the vice-president and suggested we not proceed systematically by article but brainstorm and she would connect the comments to the articles. A man from Ecuador noted that is was not just the two northern countries and that those from the rest of the region should be heard and the situations in these countries must be included. Media: accurate/positive/realistic image of pwd. People are jumping from point to point and the note taker is incorporating into the existing document. The group is recommending specifying family inclusion at many points in the document. I said I hoped that the developing countries not model the relationship of families and people with psychiatric disabilities in the US.

The 8:30 meeting started at 10 to insert the work group results into a coordinated document. There is no English material yet available. Copies of yesterday’s interventions were distributed, but not translated. The working document, called the President’s Text, two pages,, is displayed on screens in a font too small to see from my seat - about half a page. This has now been bolded and is somewhat easier to see. I received a copy and have asked for it as an email attachment to share with you. You’ll see if I am successful.. The document mostly reaffirms the necessity for a convention and includes, as far as I can see, none of the specifics about the articles that we worked on. It’s not clear to me how those will be incorporated for sufficiently official inclusion for discussion in June by the state delegates. There are drafts that have been submitted by the Governments of Venezuela and Ecuador that have not been translated into English. The state delegates are now wordsmithing the text, being very careful of the nuances of each word and phrase. This is a painstaking and excruciating process with both content and process suggestions been put forward. The draft last paragraph affirms countries’ commitments. The US and Canadian delegates are saying they are observers, can’t affirm. The other delegates of countries and areas feel empowered to support enthusiastically. US and Canada won’t join because they are currently "reviewing and formulating positions" though they support "selected elements." Text will be named the Declaration of Quito. Mid-morning break turned into lunch and the group was asked to reconvene at 2:30 which became 3. I had a protein bar which I had brought with me for lunch and visited a craft market next door - alpaca shawls, sweaters, silver jewelry, and much more and then walked around the block through the fruit and vegetable market behind the hotel - bananas, papayas, coconut, melons, peppers, yellows and oranges and reds. When I returned the conference room at 2:25, the conference room was still locked but that lock was inadequate because the laptop and power cord of the person sitting next to me has disappeared. Hotel staff are staring at the area, looking around, under the table, on other chairs, as if by magic, the computer would reappear. The computer belongs to Shelley, the CART translator who has been facilitating for Steve Estey and contains the software that works with her transcribing machine so that he can follow the proceedings verbatim. I had left both my computer, power cord, and my backpack containing money, hotel room key, ... and I’m relieved that nothing of mine was taken, shocked at the close call for myself, empathizing with Shelley, feeling some guilt and gratitude that I wasn’t robbed. I tend to be more trusting and not too careful about keeping my pack and computer at hand and I will certainly watch myself for the rest of this trip.

Now the three work groups are reporting back, summaries of their work, to the whole meeting, The summaries have not been translated, one is in English from the English group.

Mathieson: 14 page document integrating the three work group remarks, document not available in English, presentation will now be 2/3 in Spanish, 1/3 in English. I don’t see a few things that I thought were key <sigh>. However, this document is not very coherent, has changes in both languages, still needs to be integrated. The suggestion that the text be adopted "ad referendum" which means once a copy is completed in English and Spanish and accessible, parties can then add to and correct. This document is not intended to be negotiated, but rather reflects the concerns of those present. Break, 5:10, rapporteurs’ report is ready. NGO’s speak- Maria-Veronica for all of us.. CD provided by staff - not sure how many of the documents will be on it. The label says it contains documents for NY June meeting. Chair is noting this meeting has been exceptional because not only because of English/Spanish translation but also because of signing, accommodations. Meeting is ending with song by advocate. "When an institution doesn’t receive people, the street receives them." The room is at full complement, all delegates in their seats. There is a good feeling of common purpose and warmth.

A phone call from my hotel to the United States is $3.56/minute. The access charge per call to us a calling card is $2.52. And the per minute charge for a call to an overseas mobile is $22.98. Thank goodness for email!

I took a day tour and was tickled to see colleagues from the meeting part of another tour pacing or group at each stop. We drove along the Pan American Highway, through hills and valleys, stopped at at a town that makes figurines from a flour and water dough which here is called marzipan, a market town, a leather town, where there was a brief squall, and stopped at a spot at zero latitude, reminding us that Ecuador is named for its position on the equator. At the March and September solstices there are no shadows. Along the road were many vendors selling squashes to make panesca, a special soup for Good Friday made from squash, dried fish, and 12 grains. We lunched at a lakeside resort, and there were two other disability advocates.

Sunday Tina and I spent most of the day together, wandering through a handicrafts market, exploring the archeological museum, watching some Ecuadorian dancing, and walking through the rain to La Ronda, where we had potato, cheese and avocado soup and talked over what had happened and what might happen in New York at the next ad hoc committee meeting.

My alarm is set for 4 AM for the first of the three flights back to California. I expect to be in my apartment by midnight.

The phone in my hotel rang at 4:50. Could I get to the airport for the 6:30 flight? My flight had been delayed four hours. I scurried, arrived there timely, waved to Tina, waiting in a check-in line, an immigration line, a security line, settled in my seat startled that I had been adequately organized to bolt from my room after the airline call, looked out the window, and saw Tina climbing the stairs to board her flight.

The International Disability Alliance (IDA): Disabled People’s International, Inclusion International, Rehabilitation International, World Blind Union, World Federation of the Deaf, and World Network of Users and Survivors of Psychiatry has been instrumental in monitoring existing situations. In addition there are more than 600 national affiliates of the six international non-governmental organizations that have formed a powerful network for obtaining information and contacts in countries.

www.peoplewho.org