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

Video & Presentation: Overcoming Abuses in Orphanages and Institutions

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


ERIC ROSENTHAL: Okay. Let's get started again. We will be showing a video. The video is captioned, so we won't have sign language interpretation during the video, but the video will be showing only on this screen. So that may be hard for people at the far reaches of either corner of the room to see, so I strongly recommend, as you sit down, if you want to push towards the center of the room, even if it means standing up in the back for a little bit. It's a short, 8-minute video.

We will be speaking today - I guess I'll give people another minute or two to find a place to sit.

All right. We want to get going, especially since we have all these people standing up in the center here.

This panel, we will do a short presentation with some video on the rights of children and adults in institutions, orphanages, psychiatric facilities, developmental disability facilities. My organization, mental disability rights international, has for the last 14 years been conducting investigations, documenting abuses, shaming governments into action, and collaborating with advocacy groups around the world to end what are, to my mind, the most horrendous abuses taking place in the world today on a massive, massive scale. In very much of the world, people with disabilities continue to be segregated from societies, theoretically for their own benefit, with a medical patina on it that says they will be cured. Yet what we have found inevitably is that if you separate people from society behind closed doors, horrendous abuses take place.

Now, we have for the last 15 years been able to use international human rights law, which has had many important provisions, protections of basic life, torture, and those have been core to ending abuses in institutions. Yet the great lesson in the disability rights community is that we must go beyond those kinds of abuses. The key is choice, participation in society, inclusion. We will never end those abuses if we're only about cleaner facilities, better facilities, more appropriate facilities, more appropriate institutionalization. We have to provide an opportunity for every person to be fully part of society. And this Convention provides an opportunity for a radically new approach, because while it does recognize the basic rights that are already established in international law, the core principles of this Convention are about inclusion, are about participation. The Convention of the Rights of the Child now says - and it has some very good language, Article 23, on children with disabilities - children have the right to the services necessary for the maximum possible social integration. And yet UNICEF and many other international agencies have assumed national social integration, but why doesn't it mean full integration? We don't have that language now in this Convention. We have a right to live in the community and have a right to community-based services.

Let's stop for a minute and think of the word orphanage. An orphan suggests someone without parents. By most orphanages are not for orphans. They are for children who have been abandoned, or if not abandoned, whose parents simply don't have the wherewithal to keep them or the state told them they can't keep them. And it's very often a child with a disability where there are no community services and that parent hasn't been able to keep that child at home because the resources are not available. If it is not a child with a disability, the evidence has shown that orphanages are inherently dangerous places. Many parents who are very poor can put a child in an orphanage because they feel they have no choice. The evidence has shown that when a child grows up without their parents or without a family member with whom they can form loving attachments, that that will have damage, create damage to that child. And yet, foreign assistance agencies throughout the world continue to rebuild orphanages, rebuild institutions. So what is interesting about this Convention is there is a confluence between two of the principles: One, the concept of community integration, and two, we've heard a little bit more about Article 32 on foreign assistance. The whole next panel will be talking about foreign assistance. But what I would like to do is show you a video about some of our findings in Romania. Romania is a classic example of where foreign assistance has had a negative effect. When the government fell in '89, the world responded to contributing the orphanages and the number of orphanages there shot up. Then the world realized this was a problem. So the next phase of assistance was about lowering the population of orphanages, and the Romanian government wanted to show that they could lower the population. And they did so. It looks like tremendous success. But what about the children with disabilities? A system was not created for them. So what happened? The children with disabilities were either left behind or they simply redefined what was an orphanage. There were old crumbling facilities left over. And they created new facilities, put them in the center of town, and called it community integration. We're going to see some of the shots that we took in Romania. This will be a short video piece from Good Morning America. After we show the video, I'm going to turn it over to Laurie Ahern, my colleague. When Aryeh Neier was talking about the most important tool you have in implementing a convention is monitoring, exposure, and public shaming, Laurie's background is in part from running the national empowerment center for people with disabilities in the United States and having ten years of advocacy work on domestic disability rights. Before that, she was an investigative reporter. We have found, when we are able to communicate these ideas and talk to the people, get them to speak for themselves, get the word out through the press, that's when we've had the most direct and overwhelming impact. And she'll talk to you a little bit about our findings in Romania and perhaps some of the other work we've done as well. Let's lower the lights, perhaps, and start with our video.

(Video.)

We have found this problem to be on the worldwide level. When the European Union first responded to us, the letter we got from them said, how can we hold Romania to a standard that no other country in Europe meets itself. It said, and I have this in writing: Children with severe disabilities are institutionalized in every country of Europe, so it would be inappropriate for us to criticize Romania for its institutionalization of children. The European Union has now signed this Convention and our advocacy efforts are going to be redoubled to talk about what it means to implement these new requirements under the Convention.

Laurie, do you want to come up here?

LAURIE AHERN: No. I'll sit here.

It's kind of hard to say a whole lot immediately following that video. Not surprisingly, I could see sort of the shock and horror on all of your faces, and well it should be, I think. No matter how many times I see that video, it's hard for me not to get physically ill. I guess I have some hope here, though, because in this conference today, all of the activists and advocates that have been working on this Convention and the promise and hope that it holds. This is particularly personal for me. Some of you who I've known for a long time probably know this about me, and some of you maybe don't, but many, many years ago, long before the ADA and many civil rights protections were in place, I found myself inside the walls of a psychiatric institution. I found myself locked in a room, tied down in restraints, for having committed the severe crime of having emotional distress and having had a breakdown.

When I look at those children and others in institutions, and really, even though our organization is Mental Disability Rights International, invariably, we go into these institutions and we find anyone who is, I would say, throwaways in society. People with any kind of difference of any kind, a physical disability, developmental disability, many times just ethnic minorities in the countries that we happen to be in. And when I harken back to those days in that institution, the idea of my loss of freedom and my loss of hope and knowing that I was sure that I was never going to get out, quite frankly, the fact that I'm sitting here and walking around free some days just amazes me. When I see a video like that, it only takes me a second to go back to that room again. It was just a little bit of luck, I think, because those were in the days that one would go into an acute hospital, stay there until your insurance ran out, and then you would be transferred to a state institution, and I could easily still be there.

In Romania, as you all know, Romania was trying to get into the European Union, which they have been very successful in getting into, which in my mind is hard to kind of put together when I see a video like that. When we first went into Romania and we found those children, it was shocking, and it was some of the worst physical situations that we had seen. As the video said, children 16, 17 years old weighing 20, 25 pounds. Some of those children were wrapped from the neck to the ankles in sheets. And the reason they were wrapped in sheets was to keep them from gouging their eyes out, biting their hands, hitting their heads. That was the response that the staff gave. They didn't know what else to do. I guess the idea or possibly the notion that this total lack of stimulation in a child, that a child would self injure or hurt themselves because the child needs stimulation, they have to feel something, and better to feel pain than feel nothing. So it was pretty horrible. But we've seen this in many institutions. As Eric mentioned and as the video shows, the children were moved, but they were moved into another institution. I think this is one of the most frightening things to see, the idea that a clean institution is a good institution. I was locked up in a very clean room. I was tied down in a very clean room. And I had good food. And it didn't make one damn bit of difference about the way it made me feel, and I was an adult, I was not a child.

In the United States, when we were institutionalizing children, small children, babies, infants, in this country, who had plenty of food, heat, not like some of the children we found, 25% of them would die in the first three months. 25%. Not from lack of food. Not from lack of heat. But from lack of touch. Lack of love. Lack of nurturing. Basic, basic things that we as human beings need to survive.

So as Eric said, in Romania, when the European Union, who I might add got very defensive, I think because they were letting Romania into the European Union. And as Aryeh said, embarrassing governments can be a very effective tool. MDRI has been successful in being able to get international press to put a spotlight on these issues. We got the response that there is a certain percentage of people who will always live in institutions. We know it doesn't have to be true. It doesn't have to be that way. I hope that all of you who are not afraid to speak out, who have been working in human rights and disability advocacy for many years will make this a reality. And it goes far beyond the United States. What we do - I was in Turkey several weeks ago meeting with activists there. We've done quite a bit of work in Turkey. And MDRI, one of the things that we do besides just international investigations, we also work with advocates in the country on the ground to try to support them, to sustain advocacy movements in countries much and after working in Turkey for several years, there was a recently formed countrywide organization, the first of its kind, on mental health and human rights initiative to work on these issues. And I was giving a bit of a talk, discussion, about the Convention. They were very excited. They were holding a press conference there in Istanbul. They wanted to know what we were going to do here at our meeting. Whatever strategies we came up with, they wanted to know about them so that they could implement them in Turkey.

There are some good stories, though. They're not all bad. Which is good, because it would be hard to go on if they were. We've been working this Kosovo for quite a long time. When we first went to Kosovo in 2002 and released a report, there was a very horrible institution, and I don't even like to say abusive institutions because inherently they're abusive just in the fact that they exist. But a really bad institution right after the war. All the internationals came in after the war, and lots of money was pumped into Kosovo. And this institution, which physically was rundown and didn't have adequate heat, there were children mixed in with adults, there were people with all various kinds of disabilities. The international donors came in and they bought nice clothes for the people, they put marble stairs to get into the institution. No ramps, mind you, but marble stairs, which when it rains and I go there, I can barely stand up right. These were the kinds of investments made in the institution.

There were also, as I said, children in this institution, about 30, 35 kids with a variety of disabilities, who many of them had been sexually abused in that institution. There were several hundred people at that time, all adults, and then 30 kids roaming around. The internationals took the children out and put them in two different homes, one for the ethnically Albanian and one for the Serbian. For the ones that were Albanian, the development groups came in and built a beautiful, beautiful house, just a beautiful house. About 16 kids in that house. The problem with the house was that it was located on the grounds of the institution. So those children have been in that house, which is very beautiful physically, on the grounds of the institution. They can't go outside because their abusers are also wandering around still in that institution. They've never been integrated in any way with the community. There is a village about a mile away but they have yet to see it. And so basically they just replicated another institution. And those children are suffering as much, maybe not quite as much, but still suffering horribly because there's no integration of those children.

The other ironic thing was that the Serbian Kosovo children were moved to an enclave, a small village, and it's a village with a nice little town square and coffee shops and a school. And they put their children in a house that already existed right in the village. And it was a little rundown, but it was nice. You know, it was like a two-family home and there were 8 or 9 kids living there, and they were able to go outside. Some needed assistance, but they were able to go outside, they were able to go to school with the other kids, they were able to play outside with the kids, the neighbors knew them, and it was a pretty integrated situation and the children were extremely happy.

About a year ago, I went back. International donors had decided that they were going to build, just like the other kids had, a beautiful house because the house that these kids had was a little bit rundown. They built an absolutely gorgeous home again, except the problem was, they built it on the outskirts of the town. So these children could no longer see their friends. They needed a ride in a van to go to school and they needed a ride back, and that was the extent of their connection with the community. When I talked to the staff there, they said that unfortunately, since they moved from the small rundown little house in the village to this beautiful house they were living in now, they all had to go on anti-depressants because they were all so depressed, crying all the time, they lost all their friends, they lost all their connection to the community.

So I think it's a challenge. But also the hope of the Convention is not only in its legal capacity to force change, but also to bring the discussion to the floor to raise consciousness about disability rights and about what it is that every human being deserves in this world.

What? Are you telling me what to do?

ERIC ROSENTHAL: No.

LAURIE AHERN: Oh, okay. The other thing that is a success story in Kosovo I have to say is that we were able to get a promise from the president of Kosovo to close that institution. We were able to get a lot of people out but there's still about 180 people in there but we have a promise from the president to close it.

Another interesting thing too, because there's no services for people with disabilities in Kosovo, or for anyone in Kosovo for that matter, we helped start peer support groups for people with intellectual disabilities. These are people who basically are in their homes and have no access to education or employment or anything. And now there's a registered NGO made up of self advocates of people with intellectual disabilities. And now they're going into this institution and taking people out who haven't been out for 20 or 30 years to come to their meetings and help facilitate their transition into the community. So there are some good stories.

Can I go?

ERIC ROSENTHAL: It's dangerous being a moderator.

LAURIE AHERN: I'll just finish up by saying in the United States, for all the reasons that have been said today about why the U.S. should sign the Convention, there still are a lot of abuses going on in the United States. It was only six months ago I was in an institution that's not an hour from here where I talked to people who have been there 20, 30 years, and the only reason they're there is because there's no homes in the community for them to be let out to. And so they're not being let out. And probably 35 years ago, I don't even want to the think about it. But when I was 16 years old, I worked in a pediatric nursing home. When all of this came up with the Convention, I looked it up again to see if it was still there and was hoping it wasn't. Because it's a place where people with disabilities were locked away. Unfortunately, it's still there. So I'm optimistic and hopeful and glad we're all here. Thanks.

(Applause.)

ERIC ROSENTHAL: Our next panel starts immediately. I think we can take one or two questions if there are any. Does anybody have any comments or questions on any of this? Maria Veronica? Is there a microphone that we can get in the back?

MARIA VERONICA REINA: Two questions. Sorry. One is about how much these embarrassing states (inaudible) and the awareness about people with disabilities can bring to the board that I think would be a tool for (inaudible) how the balance between these two things. And some things that maybe it's just my silly concern, sometimes I get a little bit concerned - (inaudible) sometimes I feel this is going to harm me in some is way but you can tell me.

And the things about poverty, Eric, you have traveled a lot. In my country, in Argentina, sometimes people want to enter an institution because they can't get food and medical care. I want to know your opinions about that.

ERIC ROSENTHAL: If I could respond to the second question first and then move back to the first one. Your question brings me back to a conversation I had I remember in 1996 at the height when the population in Romania had gone way up in the orphanages. I remember having a discussion, a heart breaking discussion, with family members of children who had developmental disabilities who wanted to get their kids into orphanages, and it was because they felt that they had no other choice because they simply could not afford - they couldn't give three meals a day to their kids and they knew in the orphanage they would get three meals a day. They loved their children and were heart broken. So yes, sometimes people make choices to go into institutions but it's usually only when there's no meaningful other option. So yes, many people will make the rational decision to go into an institution in severe poverty. But those shouldn't be the choices. In Article 19 in the Convention, it's the government's responsibility to create those options. It's a human rights abuse in itself to not offer the integrated environment.

Regarding the shocking nature of the reports, Laurie, do you have thoughts?

LAURIE AHERN: Yeah. I mean, I think I understand what you're saying about also having a positive sort of way of dealing with these issues. And I think that what Aryeh was saying earlier, historically, governments don't necessarily give them their rights; they have to demand them. There is a time I think and a place for - especially when people are in a position in these institutions being locked away, when you're in there and people are saying, please help me, get me out, you know, you use the tools that work. But in terms of positive also, in this Kosovo situation we were talking about with people with intellectual disabilities organizing, they have organized press conferences and gone out into the community. So people are getting to know them. Whereas they've been locked away and people didn't know them. So we're also trying to help them develop some positive ways of letting the community know them and becoming integrated so people can see that their human needs are just the same as everyone else's.

ERIC ROSENTHAL: Last question.

AUDIENCE MEMBER: I forgot to introduce myself last time. My name is Thomas.

I have a question and a comment. My impression from having gone to some countries in eastern Europe is that the alternative is institution or a better institution. They don't know really what community-based living means. So a poor family with a child with a disability, in an institution, at least know have food and clothes. Isn't there a need for good practice for showing how community-based living means? The example we used, they have no alternatives.

In several countries in eastern Europe, there was a profession which combined speech and pathologists and physical therapists and defectologists. I have met many people who were proud of that. Now they're discovering this is part of another system which, thank God, doesn't exist anymore. But still, the tendency prevails in many countries.

ERIC ROSENTHAL: In terms of the positive examples, this is clearly the radical challenge of the Convention, which talks about the right to community services. And clearly they don't exist in many areas. So there are, in fact, now models in many developing countries. Laurie has done some amazing work in Kosovo with people with intellectual disabilities and self advocacy in the community with people with intellectual disabilities. There are now models that one could look at. I know the Open Society Institute has funded many model-based services so in developing countries these models now do exist. Part of the challenge is to broadly replicate them on a national level because they are now a recognized international human rights.

Thank you very much. We'll now switch to the next panel. The next panelists can just come up.

(Applause.)