The New UN Disability Rights Convention: Building Support in the United States for Ratification and Implementation

Lunch and Keynote: The Disability Convention and the International Human Rights Movement

Captioner: Natalie C. Ennis, CSR-CA, RPR / CI and CT

ERIC ROSENTHAL: Lunch is available in the hallway. I would encourage people to bring your lunch back to your seat. We'll hear from our speaker once we all get settled back in the room.

Looks like most people are settled now. I would like to very briefly introduce the man who is doing introductions for our keynote speaker.

Professor Herman Schwartz from American University is a widely respected leader in the international human rights and domestic civil rights fields. And I owe a particular debt to him that I have been looking for an occasion to fully explain for quite some is time. It was Herman who first took the risk to start the crazy idea of looking at international human rights law for people with mental disabilities. He welcomed me to American University, opened up his offices, provided the resources of this school, and my work would never have happened if he had not been willing to take a risk on a recent law school graduate with very few resources by a big idea and one that he very much shared. So Herman will be introducing our keynote speaker, Aryeh Neier. Apart from the fact that his organization is now expanding to do more work in the mental disability rights field, we owe everything we do to them. So without further ado, Professor Schwartz.


HERMAN SCHWARTZ: Thanks, Eric. It's a pleasure to be here. It involves so many things and so many people who have been close to my heart for a long time.

It really didn't take very much of a risk to go with Eric. He is an impossible person. He talked at me. I had known him when he was at the Mental Health Law Project as a student, I think. This one, it's very easy to sell high quality goods. You see before you all the things that have happened in the 14 years since. It really wasn't much of a risk, as I said.

This is especially pleasurable for me because it involves the two things that have meant a great deal to me. First has been the incredible performance of this nonrisky enterprise that got its home here initially. Before this audience, I don't have to tell you about how much MDRI has done from its very earliest years in psychiatric facilities in Hungary, in Mexico where people were freezing in these places, most recently, in Turkey in stopping electroshock therapy, and in Romania, in the orphanages where people were not taken care of as we had thought. We'll hear more about that later. And of course what MDRI has done so well is not only to do these exceptionally fine investigations and reports, but to alert the world to them, and with a keen sense of where it is you have to go in order to get your message through. MDRI, as you know, what it's done, reporting in the New York Times, on television, they have worked with Congress to get money so U.S. aid programs are involved. And in general, it has become a major force in the world. From what Eric told me a while ago, I think they are now trying to expand their efforts into not only the United States but also into Asia and Latin America.

The other aspect is this opportunity to introduce my old friend, somebody I have admired pretty much since I knew him. Those who might have been asked to take risks didn't have to worry. I have worked with Aryeh Neier for now just about 40 years. He very quickly went from the New York Civil Liberties Union to the American Civil Liberties Union. Not very many people here will remember those days, but at that time, the ACLU was a good, solid organization. He turned it into the powerhouse, the most influential force for human rights in America today, and it was he who did it back in the '70s, sponsoring programs like the women's rights project, which was then headed by the woman who became Justice Ginsburg, worked on supportive juvenile and prison projects, civil rights projects, and pioneered in the area of people with mental disabilities, working with a lawyer who unhappily is no longer with us, who developed the right to treatment for people in mental institutions and brought lawsuits all over the country which were landmark suits. Aryeh moved on to international affairs in the '70s and '80s, moved over to Human Rights Watch and America's Watch, where he almost immediately became an immensely powerful and significant figure. I remember when he and I were in Cuba together in the '80s. People just flocked around him, the dissidents, as somebody to whom they could turn in a very, very difficult situation.

And then after he turned Human Rights Watch into the premiere human rights organization in the world, he moved on to the Open Society. Now, for a good number of years, we have been talking about trying to develop something in the area of mental disabilities on an international basis, but we couldn't find anybody who really could do this. We talked to the people at the mental health law project, which Aryeh was instrumental in setting up, but we couldn't get very far because they were preoccupied with domestic issues.

Then Eric came along. I think within a few months, I asked Eric to come with me to New York. I brought him into Aryeh's office. I remember this distinctly. I had other things to do in the office at the time, and I said, Aryeh, I don't want to be involved in this at all. Here's the guy we've been looking for. Talk to him. And I walked out of the office and the rest is history. So it gives me enormous pleasure to welcome Aryeh to the school and to invite him up.


ARYEH NEIER: Thank you very much. I think my principal qualification for being here is that I haven't been as deeply involved as many of you have been in this work. But I've been involved perhaps longer than anyone else here with the possible exception of Herman. Herman mentioned a lawyer. His name is Bruce Ennis. My own major contribution to this field is that in 1967, as director of the New York civil liberties union, that is 40 years ago, I was trying to establish a project to deal with the rights of those who were considered or who were labeled as mentally disabled. The lawyer who I found to direct that project was Bruce Ennis. He was probably as able a litigator as I ever knew in my life. He subsequently became the national legal director of the VACLU. And he is also one of the finest persons I ever knew. Bruce pioneered in litigating civil liberties cases for the medically ill or those labeled mentally ill, and then subsequently, also, on behalf of the developmentally disabled.

Working with Bruce during that period, there were immense satisfactions. There were also disappointments. I think a disappointment was that we found that although we were often able to secure liberty on behalf of the mentally ill, and that was immensely important, we were not able to do so in circumstances in which significant social services were provided to then outside institutions. And because of that, a significant number of the persons who were released from the giant mental hospitals that we dealt with ended up as part of the homeless population, and I'm very sorry to say that a significant number of those in prisons and jails in the United States today are people who would have previously been incarcerated in institutions for the mentally ill.

And so it was important to free them from the mental hospitals, but it also would have been important - and we failed at this - to try to secure services for them outside institutions.

On the other hand, I thought that the effort on behalf of the developmentally disabled was really one of the great successes that I have been associated with. When we became active on the issue of the developmentally disabled, I think there were about 150,000 persons in the United States in the large institutions where the developmentally or many developmentally disabled were confined. I think the number today is under 40,000. On the other hand, at that time, there were about 20,000 persons in the United States in small group homes. Today, the number is more than 250,000. And while there are deficiencies often in the small group homes, they cannot be compared with those giant institutions for the developmentally disabled. The degree to which they live as human beings, interacting with others, the extent of their liberty, the extent to which they enjoy personal privacy, the extent to which they are able to interact with their families, is simply not to be compared with what went on previously. The institution with which I was principally engaged was Willowbrook, an institution on Staten Island in New York, which when I first dwelt it had about 6,000 inmates. And inmate is the only term that I could use to describe that institution. I recall one person I met in Willowbrook. At the time that I met him, he was a man in his 40s. Because the attendants at the institution considered that he could not clean himself, he was hosed down periodically. He was thought not to be able to dress himself and not to be able to feed himself. As a consequence of the litigation that we engaged in, I saw him about three years later in an institution in the Bronx in New York which was a kind of halfway house between Willowbrook and a small group home. The director of that institution in a sense made the best out of an architectural mistake. The institution was housed in a spectacular building designed by one of the world's great architects, Richard Meyer, and Meyer got it all wrong. He had the building inward looking, whereas what one wanted to do with the developmentally disabled is get them out into the world. It was a piece of extraordinary contemporary architecture, but it had very curious features. One of them was that the different rooms of the building had oval windows at the floor level. And I could remember asking Richard Meyer, why did he put the windows at the floor level. And he said, when he had gone to an institution for the developmentally disabled, he saw them lying on the floor and so he wanted them to be able to look out the window so he put windows on the floor. And I asked him, well, wouldn't it be a good idea to help them sit up in chairs and stand up and not lie on the floor. But that wasn't what he had seen and so he designed the building for what he thought was the appropriate way to make arrangements. But the man who ran the institution, a Dr. Herbert Cohen, did some very simple things which seemed to me to help overcome a lot of the difficulties. One of the things he did was to organize the building into apartments. And as you came to an apartment to visit the persons living there, he knocked at the door. And he didn't enter until someone opened the door for him. The very idea that the developmentally disabled should have such privacy that they could determine whether somebody came in the door and that you simply didn't barge in was something inconceivable in the previous circumstances.

At that point, the man I had seen in his 40s was certainly feeding himself, certainly dressing himself. He was taking showers. I saw him again about three years after that living in a group home. And at that point, he had a job. He was employed wrapping packages. And the gap between being hosed down in that giant institution and being able to work, being able to support himself living with a few other men in that group apartment, was all the difference in the world. And the satisfaction of seeing the effort to protect the rights of the developmentally disabled lead to that transition in a person's life seemed to me something tremendously significant.

I think that the U.N. Convention gives us an opportunity to try to promote changes of that sort internationally. It will be very difficult, but this is the best opportunity there has been to deal with these issues. And I'm afraid that there are many places around the world where the conditions that I saw in Willowbrook 40 years ago continue to prevail today. It won't be easy because I think that in many places, there won't be a possibility of engaging in litigation effectively, to secure implementation of the Convention, though there are some places where I do think that will be possible.

But the foremost mechanism that the international human rights movement uses in order to promote the issues with which it's concerned is monitoring. The essential element or the essential elements of monitoring is that there should be agreed upon standards. And once you have agreed upon standards, then you can say, look, there's a discrepancy between the practices and the standards that you've agreed to. And by pointing out these discrepancies, you get officials to move in the direction of the standards they have agreed to uphold. And if they don't move in that direction, you create embarrassment by pointing out these discrepancies publicly. That's the main method - it's not the only method, but it's the main method by which the entire international system of protection of human rights works. And it's what makes international agreements about human rights meaningful. It's that ability to cause embarrassment by pointing out those discrepancies between standards or pretenses of government and the actual practices of government.

In the case of the Disability Convention, at least in the mental disability field, which is the one where I've had some engagement, there are so many significant things that one could find. This commitment to community residence, to inclusive education, to legal capacity, to privacy. These are simple things, in a way, but extraordinarily significant. They have not been rights which the mentally disabled, the developmentally disabled, have been able to claim. And by serving as monitors of the way in which those rights are actually dealt with in practice, I think it is possible to move in the direction of the commitments or the provisions of the Convention.

What matters this international human rights often is the degree to which the advocates take seriously the various commitments. For example, the Helsinki accords of 1975 are very weak as international law. They're not a treaty. They're not a body of law that was ratified by various governments. What made them important is that human rights activists took them seriously and monitored the compliance by their own governments with those provisions. And in the process of taking those provisions of the Helsinki accords seriously, they actually became much more significant than many treaties that are considered to be binding international law. Our Secretary of Defense, Robert Gates, was once the director of the Central Intelligence Agency. He served in that position under Gerald Ford. And if you read his autobiography, he talks about the way in which Ford was criticized for going to Helsinki and signing the Helsinki accords. He was giving away a great deal to the Soviet Union, according to the critics, because the Helsinki accords recognized the boundaries that emerged from World War II. And then Gates goes on to say, who knew at the time that the human rights provisions of the Helsinki accords would turn out to be far more significant than anything else that the government of the United States had ever done in helping to bring down the Soviet system. But that was because human rights activists took seriously those provisions, monitored compliance with them, and in that fashion, made them meaningful.

I think the challenge that lies before us at this moment is to get governments to adopt and ratify the Convention, but equally, it is to mobilize the international human rights community to take seriously the provisions of the Convention and to engage in the kind of monitoring which will bring about the embarrassment of governments. And in that fashion, make meaningful the provisions, whether or not they are subject to enforcement to litigation, because the strongest pressure that can be mobilized on behalf of human rights anywhere in the world is the force of public pressure. Thank you very much.


ERIC ROSENTHAL: We have a few minutes left in our break for lunch here, and Aryeh and Herman have agreed to stay on for a little bit. So we can open it up for some questions and discussion. There are some people with microphones. Jerry. And if people could generally identify themselves before they speak, that would be helpful.

AUDIENCE MEMBER: Hello. Jerry White, Director of the Landmine Survivors Network. Thank you very much for your intelligence applied to this very important issue.

In our previous conversations and also in our experience at Landmine Survivors Network, we went around to the large human rights institutions. We did the tour. We were realizing that we had to lobby our allies, our friends, those who were leaders in human rights from Human Rights Watch, Amnesty International, foundations traditionally active in human rights, and the answer we got very often was, we don't do disability rights. They're special rights. So we moved from that position to work with the disability organizations around the world and create this Convention, thinking that if there was actually an international standard and tool and legal obligation, then perhaps some of these other organizations would then pay greater attention.

Now we're at that moment where things can be incorporated. Do you have ideas for strategies? In fact, there's still some resistance we're hearing from different movements and groups saying, well, if we had resources. But this idea that they could be bought or promoted in that way is still rather disturbing to many of us in the disability rights community and wondering if you have some advice for us on how to infiltrate, integrate mainstream and not make this about 650 million people in the world but 6 billion.

ARYEH NEIER: I have a few comments on that. One comment is that I think it's important to define disability rights in a certain way. An example of the way I think it can be defined, and I think it should be defined, is as is done in the Equality Act in South Africa. The Equality Act in South Africa deals with discrimination on the grounds of race, gender, and disabilities, and it puts the three on the same plain. And I think that's very important because in my view, the rights of the disabled are rights of persons who have the status of being disabled as the rights of racial minorities are the rights of people who have the status of being members of a racial minority, and as the rights of women are the rights of persons who have the status of being women. And I think that approach to the rights of the disabled I think gives the concept a significance which is one which it deserves, but I think that can be important in the way in which rights organizations think about it.

I also think that the U.N. Convention is an enormous help, because as I said, the major mechanism that most rights groups use is monitoring. And so it gives them something to monitor. It allows them to say, here are normative standards. They have been adopted. They have been agreed to. Our government has said that it will abide by these standards. And so this is the sort of work they ordinarily do, and therefore, doing it in this context I think is appropriate.

The question of resources is not one which you can - it's not a trivial one. There are difficulties. Let me illustrate this. With my own experience at Human Rights Watch, in the late 1980s, we had decided - we, that is members of the Human Rights Watch board and I decided we wanted to establish a women's rights project. We got tremendous resistance to the idea. At that point, it was not generally accepted that women's rights was part of the mandate of human rights organizations. The largest funder through most of our history up to that point had been the Ford Foundation. At that point, the McArthur Foundation had just come in and exceeded the Ford Foundation. But the Ford Foundation was still our second largest donor at that moment. The Ford Foundation human rights officer was somebody who came out of amnesty international in the 1960s and believed that the human rights agenda as defined by Amnesty in the 1960s was the proper human rights agenda, and that didn't embrace women's rights. She was immensely antagonistic, as well as her immediate superior, to the point where they cut the Ford Foundation's funding for us. Within the staff, we had tremendous resistance. The woman who directed our Asian division also came out of Amnesty International and was appalled at the idea that we would engage in efforts on behalf of women's rights. And there were others on the staff who took other similar positions. So we had a loss of funding for getting into the field, we had staff resistance, and we had a huge agenda to deal with. It would be very easy not to deal with the issue of women's rights. Well, a few years later, it was broadly accepted. But our willingness to go into the field played a significant part in that shift in the agenda.

So when organizations say to you - you know, it's not easy. In fact, it isn't easy for them. They don't necessarily have in their own circle people who have experts in the field. They do want to bring somebody on if they're going to do it who has the expertise. They need the resources for that. There is resistance from the people who are engaged in the present activities of the institution. So there are hurdles to overcome. They can be overcome. And the Convention helps enormously in that respect. Frankly, the fact that the Open Society Institute is a source of funding could also be a help. We have a board meeting coming up in two weeks, and we have an agenda item to enlarge the funding that is available because of the Convention in order to be able to support the ratification efforts. If we have money available for it, it will be easier for various groups to get involved.

But those sort of practical realities are something one has to deal with.


JUDY HEUMANN: Thank you very much for your comments. I want to support very much that comment that you made about the importance of the establishment of standards. On the issue of institutionalization for disabled individuals, both those with mental disabilities, physical disabilities, and so on, I think we have a few issues. In the United States, eastern Europe, Europe, where we have created large institutions over the years and are how to looking at the issue of deinstitutionalization, but in other countries, there are very few institutions. But as economies get stronger -

ERIC ROSENTHAL: Can you speak more into the microphone?

AUDIENCE MEMBER: It's not working.


JUDY HEUMANN: Is that better? The point that I'm trying to make is that I think the issue of standards is very important and the creation of standards in countries that do have institutions and don't have institutions I think is equally important. And that the challenge that we're looking at around the world are some more affluent countries who have created institutions and are now looking at the issue of taking them apart, and other countries that have not yet created institutions. I'm wondering if there's any work you're doing right now that would also be providing assistance to countries that have not yet embraced the issue of institutionalization to really thwart off the creation of institutions?

ARYEH NEIER: Up to now, our efforts in the mental disability rights field has focused not exclusively but mainly - a stronger word than mainly is probably required - on the countries of the former Soviet block. Those are countries which have had institutions. We're looking to engage on these issues on a more global basis, and the challenges will be very different in other parts of the world.

Years ago, I undertook the investigation of prisons in India. I was startled or shocked to learn at the time that a lot of the places where the mentally disabled were confined in India were simply wings of the various jails and prisons around the country. They weren't different in any aspect of their operation; they were simply other parts of the same institution. So there will be many variations from country to country, and I think we'll have to learn by taking on a responsibility for this effort more globally about the different circumstances in different countries and how to try to deal with those circumstances.

ERIC ROSENTHAL: Okay. Rob in the front.

AUDIENCE MEMBER: Thanks. Rob Cushion from the Open Society Institute.

One of the questions I had about the Convention is that while to some extent the Convention recapitulates existing standards that arguably exist in other international instruments, in a few areas, the Convention appears to be really pushing the envelope. We heard about the area of supported decision making and the fact that there are very few countries where a robust model of supported decision making exists, and yet the Convention and its provisions on legal capacity suggests that that's where countries should be.

So my question is, do you have experience of human rights standards that really are far in advance of state practice? And how can civil society help to monitor and press those standards that seem to go well beyond what most states are doing presently?

ARYEH NEIER: It's a good question. I'm not sure that I have the ready example to mind of standards that go significantly beyond state practice. I do think that that question of legal capacity and supported legal capacity is really one of the outstanding features of this Convention.

Thinking about other international standards, it's very hard to think of things in most international human rights treaties which really are as revolutionary as that. If you look at, for instance, the universal declaration of human rights and the international covenant on civil and political rights, there are things that are, let's say, different from what is the practice under, say, the Bill of Rights in the United States. The international covenant on civil and political rights, for instance, includes a provision involving compensation for those who are accused of a crime and then acquitted. And we don't have a right of that sort, let's say, in the United States. I don't think there has been enough of a push to deal with something like that in the work under the international covenant. So I don't think that's an issue quite as central as this question of legal capacity. The legal capacity provision seems to me at the very core of this Convention.

ERIC ROSENTHAL: Her man, you have a question?

HERMAN SCHWARTZ: Yeah. I was wondering, Aryeh, what role do you see for the committee that will either immediately - I don't really know how that works - or ultimately set up to enforce the Convention like the committee on civil and political rights under the international convention and others?

ARYEH NEIER: These committees can be important, by only to the degree that there is a significant effort by civil society groups internationally to make its activities significant. That is the filing of shadow reports, monitoring reports, giving it the basis for being able to evaluate the reports it gets from government and treating its decisions seriously seems to me at least as important as the actual work that the committee itself does.

ERIC ROSENTHAL: Okay. Any other last questions? Holly.

AUDIENCE MEMBER: Thanks so much. Aryeh, that was just marvelous. The last conversation about legal autonomy and rights in the Convention informs my question about where the opposition to the U.S. signature and ratification will come. Someone earlier today said something about who would want to be opposed. And I think that there are some real advantages. The issue is so dynamic and the community that works on it is so dynamic. But when I think back to the signing of the mine ban Convention, it really turned not on the absence of a dynamic. There were lots of people in the room active on the effort. But it sort of turned on expertise. And when there's a head to head between Jody Williams and the USICBL and the pentagon, most people are going to go with the expertise and fact.

In trying to think through where we're going to get into trouble, on this Convention, I'm finding myself a little nervous about the medical community, about the hospitals, and about family members of institutionalized persons as being a source of alternative expertise to that that you see represented in this room. I'm wondering what you're thinking. It's a political question, but your long experience on this around the world makes me want to pick your brains for the few moments we have you here. Thanks so much.

ARYEH NEIER: I'm sure that that provision on legal capacity will be the greatest stumbling block so far as the United States is concerned. And I think the argument will be that guardianship positions are a state responsibility and that the federal government is not in a position to sign a treaty that would override the various state laws on that subject. It's traditionally an issue that is left to the states. It's hard for me to see the U.S. ratifying the treaty, given the opposition that there will be on that particular issue.

Now, I don't know. The treaty says that reservations can't be inconsistent with the treaty. Is that something that could be dealt with through a reservation? I don't know. I think that would be inconsistent with the treaty.

ERIC ROSENTHAL: You're not going to get me to go there.



ERIC ROSENTHAL: We had one question from the very back. Can we get a microphone there?

AUDIENCE MEMBER: I just wanted to add to the list of potential opponents. There are those that rely on orphanages and guardiancy and so forth. I hope they don't break up too soon.

ERIC ROSENTHAL: Okay. One last question so we have a little break until we continue until 2:30. Any last questions? If not, well, thank you very much. That was extremely valuable.


I really appreciate it. You know we'll all be rooting for you. Thanks very much.

Now we can take a little break and we'll resume at 2:30 sharp.