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Selections from an Oral History of Policy and Advocacy in Developmental Disabilities as Reflected in the Life and Works of Gunnar Dybwad Ph.D.

The Contribution of the Courts to the Renewal of the ADA

Video courtesy of the Elizabeth M. Boggs Center on Developmental Disabilities, New Jersey's University Center for Excellence in Developmental Disabilities Education, Research, and Service.

Voice over: Gunnar Dybwad, Professor Emeritus of Human Development, the Florence Himmler Graduate School for Advanced Studies in Social Welfare, Brandeis University, holds degrees in Law and Social Work which have enabled him to advocate nationally and internationally on behalf of persons with mental retardation.

He has served as consultant throughout Europe, Central and South America. He has provided expert testimony in significant class action litigation involving persons with mental retardation. Dr. Dybwad served as Director of the National Association for Retarded Citizens from 1957 to 1964.

He and his wife, Dr. Rosemary Dybwad, have received awards for outstanding service from the American Association on Mental Deficiency, the International League of Societies for the Mentally Handicapped, and, most recently, the Kennedy International Award for Leadership in Mental Retardation.

Dr. Gunnar Dybwad: It may sound strange, but it is quite correct to say that individuals designated as mentally retarded led a lawless existence in the first half of this century in our country.

That does not mean that they were criminals. Rather than sinning, they were sinned against by society by being deprived of any benefits of law. They, indeed, were lawless, without the protection of the law. And the only parallel to this we could find would be in the existence in our country of black people as slaves. They, too, were not persons but were chattel or things.

We now have so firmly established tremendous progress in the field of mental retardation, whether you think of education, whether you think of social adjustment, whether you think of vocational pursuits, whether you think of lessened dependence on the behalf of others. In what all areas of human life, these individuals termed mentally retarded, indeed, have now shown to us most definitely that they are persons, that they have a humanhood just as all others of us have.

Much of the progress I have just referred to, of course, has been of a particular benefit to the thousands of people in our state institutions. Those large state institutions which have been characteristic of our country, of England and of Canada. And in these institutions we have had in the past conditions which really were worse than what went on in our prisons.

And I can say this with certainty because both my wife and I started out in the prison field. In 1966 Burton Blatt published Christmas in Purgatory, which documented that these very same conditions in Massachusetts, and still in the state of Massachusetts issued in later that year a report signed by both the Commissioner of Mental Health and the Commissioner of Public Health and promulgated by the governor, the conditional institutions were not discussed, were glossed over.

So this, indeed, indicates that renewal in the field of mental retardation was a very slow process because so many of our administrators, public officials, legislators still had this old view of the individual with mental retardation of really not having any rights. Whereas in our prisons, the rights of prisoners, were very well considered and people actually maintained conditions there so as not to conflict with these rights.

Change, of course, did occur, and, significantly, the change in the viewpoint towards the rights of persons with mental retardation started at the very moment the National Association for Retarded Children was created in Minneapolis in 1950. The Governor of Minnesota, Luther Youngdahl, was a distinguished jurist who later served on the Federal Circuit bench in Washington. And this is what he had to say as he opened this First Congress, this founding convention of the National Association for Retarded Citizens. It is a rather stirring oratory which, as you will see, was far ahead of the time.

He said, "This point is, ladies and gentleman, the retarded child is a human being. Above and beyond being a human being, he is a child. And for reasons neither he nor his family are responsible, he is retarded. He has the same rights that children everywhere have. He has the same rights to happiness, the same rights to play, the same rights to companionship, the right to be respected, the right to develop to the fullest extent within his capacities, and the right to love and affection."

"He has these rights for one simple reason. He is a child. And we cannot discriminate against this child – deny to this child the rights other children have because of the one thing that neither he nor his family can help – because he's retarded. Whether he's in Minnesota – or any other state in the country or any other country in the world – he is still a child. But we have forgotten this. And with rare exceptions throughout the country the provisions we have made for him are barbaric."

"The retarded child has a right to social assistance in the world in which he cannot possibly compete on equal footing. He has a right to special education." He said this in 1950. "And to special institutions for the retarded child who cannot be taken care of at home. He has a right to be provided with the most modern training in institutions that is possible, an institution marked by not only the pleasantness of its brick-and-mortar, and lawns, and play areas, and education services, and child specialty medical services, but by an atmosphere and by a group of people in attendance who will not only give that child patient understanding, but to love and be affectionate to that child as other children get at home. He has a right to these things. And his parents have a right to know that he has these rights. For they, too, are entitled to peace of mind about what is happening to a retarded child separated from home."

That is what Luther Youngdahl, the jurist and politician, said in 1950, and nobody understood it. Not even the people in attendance at this conference understood the meaning of what he had to say. They were just nice words like a Fourth of July address. And it took a long time for this to take effect.

By the way, Luther Youngdahl talked about the child because in those days, we really still felt that mental retardation was a child problem out of which you would not grow. And it was only a little later, in 1960, when I submitted a report to the 1960 White House Conference on Children and Youth that I pointed out that insufficient attention had been given in the past to the legal status of the mentally retarded child and adult, particularly with reference to the degree of legal protection required as related to the degree of mental handicap.

That was 1960. And in that same year, Senator Ervin of Watergate fame, convened a session of the Senate Judiciary Committee, of which he was Chairman, in which he discussed in detail the rights of mentally ill and mentally retarded persons. And the next year, the President's Panel on Mental Retardation, Kennedy's contribution to our field, established a special task force on law of which Judge Bazelon and Dr. Elizabeth Boggs were the co-chairmen. I had resigned from the National Association for Retarded Children – I served as the Executive Director in 1963 – and for three years my wife and I were in Geneva, Switzerland with the International Union on Child Welfare on a special mental retardation project.

In 1967, I was called back to Brandeis University to assume direction of a special doctoral program in mental retardation. And it was during that period that some people came to visit me from the Pennsylvania Association for Retarded Citizens. I had worked with them for many, many years coming there frequently as a consultant, and I had helped them with the incredible problems which then existed in Pennsylvania where thousands of children were excluded from any school attendance because of retardation and where conditions existed in the mental retardation state institutions which one really cannot discuss in polite society, they were so bad.

Well, they came to us for help, and I knew what the situation was. They had made every effort up to several conferences with the governor himself – and some of them I attended – and with the Secretary of Welfare and with other high state officials to beg for changes to be made. They had been very active in the legislative field, testified, and, indeed, I arranged for some of my Scandinavian colleagues to actually come to Pennsylvania and testify before a legislative committee as to what could be done. And, in addition, we had some very excellent publicity, expose of conditions but nothing, nothing was helping.

And it was on that day that I said to my colleagues, "We've exhausted all these means, but there is one channel that remains open to us. We have a government that is divided into the executive, the legislative, and the judicial branch. We have never used the judicial branch. It is time to go to court."

Well, we at Brandeis that afternoon quickly found agreement with my proposal. But when the proposal was brought back to the board of the Pennsylvania Association, they said, "Well, we can't do this. We could not possibly go to court and sue the Governor, sue the Secretary of Welfare. It has taken us years to be on first name basis, this is no way to do it."

And for six months were stalemated until a very significant thing happened. It is an anecdote, but it is true; I was present. The institutional committee of the Pennsylvania Association made a report at the annual convention to the board of directors. Only to the board of directors. And the chairman of the institution committee, who happened to be a lawyer at that time, a Philadelphia lawyer, made a report on some recent incident that had led in one of the institutions to the death of a child. And by the way, a death that was not even reported to the mother. When a telegram addressed to her old address came back, nobody cared, and the mother came to visit and suddenly heard that her son had been dead for several weeks.

The lawyer in his best courtroom manner proceeded to talk about the case. We have been able to find the body of the dead boy. It was already in a medical establishment but still kept on ice. So we were able to go to court, insist on an autopsy. The attorney very quietly, very calmly in soft voice explained the damage to this boy. He had been burned apparently and so on.

And what happened was that this board of directors all of whom previously had been thinking of the secretary, of the governor, of their relationships suddenly saw that what it was all about was a little boy who had been alive and now he was dead. Why was he dead? And after that meeting the board authorized the employment of an attorney to study the possibility of a lawsuit. That was the great change. And this, you see, one has to consider when one thinks about judicial action.

Burton Blatt's exciting book Christmas in Purgatory dealt with societal issues. But when we go to court, when we ask a federal judge for help, we go to court on behalf individual plaintiff, and we ask the court to remedy injustice that happened to these individuals. And this is what led to the employment, in this case of an attorney. It was Thomas Gilhool, who, indeed, investigated and subsequently came forth with some very good suggestions as to what the State Association for Retarded Children should do.

And very wisely, he decided that we should not worry about the institution as our first step. It was too difficult for judges, for the public, for others to understand the running of an institution. He said what everybody knows is that children ought to go to school. Let's start with the denial of education for children with mental retardation. And so the famous Park case, the first case in this judicial revolution we have had in our country, that got started in Philadelphia in the federal court house. And, of course, it resulted, significantly, in a consent agreement.

Very quickly thereafter in Washington, DC, the Mills case came to the fore. And just to give you a flavor of what happened in these cases, I was asked to make a deposition and a question which the attorney for the retarded children put to me was, "Can you state an opinion as to educational sufficiency of providing only two hours of instruction per week to institutionalized adolescents labeled as dull normal and emotionally disturbed?"

And I said in answer in my deposition, "The fact that a child may have to reside in an institution does not diminish his need for schooling. To the contrary, anyone acquainted with the limitations and deprivations imposed by institutional living realizes that children in institutions need the guidance and stimulation of a full-scale education program. To provide for such children or young people two hour's instruction per week can only be compared to giving a starving child two meals a week. Two meals a week do not make a diet, and two hours of instruction per week do not make an educational program." The Mills case was the first case which was solved with a judicial decision, not just a consent decree, and, as such, as gone down in history, as a very significant federal case.

My next involvement with the judiciary process on behalf of persons with mental retardation was a famous Alabama case, Wyatt v. Stickney, which was a most memorable occasion because, I was privileged to get to know Judge Johnson, one of the most distinguished, most conservative judges on the federal district bench.

The point I want to make is this, that at the first hearing in this case, Judge Johnson, eager to avoid a long, drawn out court case, gave the Commissioner of Mental Health of Alabama six months to come forward with a plan to remedy the conditions about which the complaint had been filed. Actually, it was seven months until the court reconvened, but the document which the executive branch had prepared through the Commissioner Stonewall Stickney in good Southern tradition – that was his name – was so inadequate that the judge refused to accept it, and we had to go to trial.

I happened to be the leadoff witness in this case. And the attorney was asking me whether I thought that really what people were receiving in that institution was no more than custodial care. And I said, "Oh, no I could not say this. Because how could you speak of custodial care of custody in an institution where nobody was safe from injury, from attack, from just unspeakable conditions? So this hardly could ever be termed custodial care." This happened to impress the judge and also was an important argument in the ensuing review of the case by the Circuit Court of Appeals.

One other point I want to bring in because it is not as extraneous as it may appear. Judge Johnson in this decision referred to the United Nations Declaration of the Rights of Mentally Retarded Persons. He did so to indicate that, indeed, we were dealing with a new era, an era where the recognition of the rights of mentally retarded had not received just national but international recognition.

It is interesting to say in a few words how this declaration came about. The International League of Societies for Persons with Mental Handicap, the organization of which the National Association for Retarded Children, now Citizens, is a member, convened in 1967 in Stockholm, a symposium on legal and legislative problems. And that group of international scholars – and, of course, once again New Jersey was represented by Elizabeth Boggs – came forth with a very significant section in their recommendation. And I would like to read just one paragraph from it.

That section dealt with individual rights and said, "The symposium considered that no examination of the legislative aspects of the problem of mental retardation would be complete without general consideration being given to the basic rights of the mentally retarded, not only from the standpoint of their collective rights and those of their families, but only from that of the individual rights of the retarded person as a human being."

And then the ensuing recommendations were reviewed the following year by the next World Congress of the International League held in Jerusalem under a very significant title, From Charity to Rights. And the congress fashioned by general agreement a declaration of rights. That was in 1968, and nobody could have convinced me, an optimist if there ever was one, in those days that within three years the United Nations would have adopted this declaration without a dissenting vote. But that is what happened. And just as a by the way, four years later this declaration of rights of mentally retarded was extended by the United Nations as a general declaration of the rights of disabled persons in general. A rare incident where retarded people were leading the way.

The question can well be raised: Was all the expense – and it was considerable expense – the disruption, the judicial encroachment on executive agencies really justified by the results obtained? Well, it would seem to me that the answer is best being given by the thousands, indeed, by now the tens of thousands of children who are now in school who previously were deprived of their education. By the thousands who faced abuse and neglect in institutions whose fate has been substantially alleviated, even though much remains to be done.

They and their families will readily acknowledge the debt they owe to the judiciary. But beyond these personal long overdue gains, there are very many systemic improvements that have come to us in the wake of these court decisions to bring to this field at long last a renewal in what we call mental retardation.

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This project was supported, in part by grant number 2301MNSCDD-02, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects with government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official ACL policy.

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