The Arc of Disability Rights Litigation
In the Supreme Court: The Right to Treatment
When I first looked at this, which was 1971, 72, when I was in law school, and wrote my first lawyer review article. I wrote one article about 7 or 8 topics that had been hardly looked at before at all, some of them not at all. And, then was one article, it was 10 or 20 pages now there are books about individual topics, like restraints, like the right to refuse treatment, like the right to treatment. So, there were many people who began, in that period, around the 1970s, to say, when people are in the institution, do they have a right to say no drugs? Do they have a right to not be put in seclusion or restraints? With what kind of procedures? Do people have a right to visitors, to access for advocates? And, then as folks began to think about those questions, the question arose- What happens when people don't need to be in an institution? People like me and other advocates, including Bill Johnson, here in Minnesota. People began to say, "Maybe we don't need either as many institutions, or any at all for some folks.
So, there began to develop out of the litigation around conditions in institutions. Litigation like the Halderman v. Pennhurst State School and Hospital case in Pennsylvania. Wyatt v. Stickney in Alabama, the Willowbrook case, NY Association of Retarded Citizens vs. various state officials. They began to develop litigation that said, #1 We don't need bad institutions, and #2 for some people, there's no need to be institutionalized at all. So, that kind of litigation began to move through the courts, and eventually, in 1990, the Americans with Disabilities Act was passed, which referred in its preamble, I'll call it, to needless segregation of people with disabilities, but didn't directly address what the rights are of people in institutions. The U.S. Supreme Court in 1999 decided the landmark case of Olmstead v. L.C., and in that case, for the first time, the Supreme Court declared that needless institutionalization in itself is discrimination because institutions segregate people with disabilities from people without disabilities and therefore, it is illegal.
So we have, without right now going into all the history. We have, really, a shape I think, of the social and legal developments around people with handicaps and disabilities, where we begin with social moral considerations, move into a rights orientation. Rather than it being a good thing to do, it's the right thing to do, it's a legal right. And then where the focus is begins to develop and shift from how we get into institutions, what happens when we're there and then whether or not we need to be there at all.
Some reflections on some of the work I've done and some of the cases that I've done. Because it's been an interesting journey for me, in 1971, 72, I was finishing law school, and created the first mental health advocacy project in an institution in the United States. Two foundation grants, an office with a desk made out of a table propped up on two sawhorses, a typewriter borrowed from a former mental patient, and then began doing this work at an institution called Haverford State Hospital in Pennsylvania and brought some of the early lawsuits that nobody had ever done before.
I brought one case involving the right not to be forced to do labor. Downs vs. Department of Public Welfare, the first case that ever declared that forced institutional work, which used to be the norm, violates the 11th Amendment ban on slavery, on involuntary servitude.
I also brought there a case that I never thought would take as long as it did, and that was a case involving the rights of children not to be committed to institutions simply on the say so of their parents. I represented a few individual children in a class action, and in one of the hearings in front of a three judge court, the court said, Well these are kids, don't they need a guardian ad litem for the lawsuit to represent them? I deferred to the judge and said, Maybe they do. And the judge right then and there appointed me the guardian ad litem of all 6,000 children in all Pennsylvania mental institutions. And I had that responsibility through a couple of arguments in the Supreme Court.
When I began the Halderman vs. Pennhurst State School and Hospital case, it was one of the first suits I filed. I had been a lawyer just a couple of years and never thought it would have such an impact as it did. And the way that case began is worth recording because it really exemplifies how many other cases have preceded. Terry Lee Halderman, who had been injured at the institution 30 some times, I think. Her mom was upset. Her mom asked the assistant superintendent what should she do. The assistant superintendent told her, call David Ferleger and sue me. So that case began, not because I was there for some other reason. I had done mostly mental health, not intellectual disability type cases, but because the institution itself, an official said we need to be sued about what we are doing. The case was in front of Judge Raymond J. Broderick, an incredible federal judge, a Republican conservative who, through the course of a 32-day trial eventually ruled that no one with retardation, now called intellectual disabilities, needs to be in any institution at all and that people have a right to live in the community.
So, I've counted it up once, I think I've been in 30 or more states, looking at institutions or litigating in institutions and the images unfortunately stay with you for a while. In a Wyoming institution, I remember a very dark room with volunteer grandparent types holding very little children, trying to rock them to sleep or comfort them. Children who need never have been in an institution at all.
In Florida, as a court appointed monitor, I had heard that they were using a new kind of restraint and went down on behalf of the court to see what it was. This was called the mat wrap in which the client with the behavioral outburst, let's say, was rolled up on a mat and I'm thinking that I was protected by the court order, protected by the other two court monitors there, the head of the institution. I ingenuously, I guess could say, volunteered and said let me try it. Let me have myself wrapped up in the mat. They hesitated, I laid down, stuck my head out, tried to use my elbows to give myself some room. They rolled me up in this mat and it was the most terrifying experience I've had had in my life. I felt that I would never get out, even though I knew intellectually that they wouldn't wrap up a court monitor for hours, but it was so terrifying for me who could intellectually understand what was happening. And it made me really think about what the experience was like for someone without that much intellectual capacity who doesn't know why, doesn't know what's happening, doesn't know how it will end, what to do to make it end, and how incredibly traumatizing that would be to someone without the kind of capacity I thank God that I have.
So, among the things that have happened, that people in my generation of advocacy have seen is the closing of institutions in the last 10, 20 years, dozens of state institutions for people with intellectual disabilities have closed. People have moved to the community. Governments have seen, the community has seen that people don't need an institution, to have a quality of life, their right to education laws have helped. Children are no longer being admitted to institutions and so we've seen some really wonderful changes.
It's been quite an experience for me an amazing experience to be able to argue some of these cases at the U.S. Supreme Court. The court gives everyone, who argues, finds on their table a little quill pen that's hand carved from some gooses feather, whoever it is that contributed the feather and that's one of the things that's left.
Another thing that's left is one of the stories that I like to remember, and that was in the case involving children, and children's rights to a hearing or some process before a commitment. The state's lawyer argued that children could file a petition for Habeus Corpus. A child unnecessarily locked up could go to the court and say "I shouldn't be here." And that was an alternative to my proposal for some kind of hearing. And Justice Thurgood Marshall said, "What are you saying, how can a child file a petition of Habeus Corpus" and the state's lawyer said, "well if the child couldn't do it, then a friend could do it" and Thurgood Marshall, famous for his humor he said, "Well aren't most friends of 12-year-olds also 12 years old?" Everybody laughed and we went on.
So, what will the future hold? The future will hold fewer and fewer institutions, more scrutiny of quality community care and some developments that I think will occur in the law regarding community life that deserve some attention elsewhere.