Parallels In Time
A History of Developmental Disabilities

Allen Crocker: Our next speaker is an important one. Tom Gilhool is a civil rights lawyer of uncommon skills and devotion. He's been 30 years in the Public Interest Law Center of Philadelphia, which is a magic name to those of you who know the field.

His own career has had concerns, particularly with developmental disabilities, with poverty, with child health, and in this, he's had extensive common effort and common belief with Gunnar. Their partnership on PARC v. Pennsylvania was a turn point in the progress of our field. It is extremely appropriate that we share some views with Tom Gilhool.

[Applause]

Tom Gilhool: Gunnar would want all of you, I think, to know that his friend Allen Crocker received, just a few weeks ago, the C. Anderson Aldrich Award from the American Academy of Pediatrics for his work in child health, an award previously bestowed upon Benjamin Spock and Terry Brazelton and Anna Freud and Gunnar Dybwad.

[Applause]

Ladies and gentlemen, friends, by 1968, in his 60th year, Gunnar enlisted as teacher and mentor of the ARC across the country. Especially as it turned out, the Pennsylvania ARC Rosemary cautioned that it was not necessarily because he loved Pennsylvanians more but because the spot on Second Street in Harrisburg was, in Gunnar's opinion, the finest greasy spoon in America.

[Laughter]

In 1968, of course, the Residential Services Committee of the Pennsylvania Association for Retarded Children conducted another of its periodic investigations of conditions at Pennhurst, Pennsylvania's flagship institution. They found that life there was nasty, brutish and short. And they concluded that the institution was not redeemable.

In December, 1969, the Committee's findings and conclusions were presented at convention, the theme of which was, "Partners in Progress." Gunnar's address to the convention opened, "I hope you will let me ask you a very blunt question: What progress?"

"And which partners? For 19 years," he said, "you have tried to be nice. You've kept quiet too long." He closed, "You have adopted a resolution with which you finally take the first steps to assure for Pennsylvania's retarded citizens some rights in their own country. This resolution to retain counsel to determine what legal action you as an association can take against the Pennsylvania Department of Public Welfare to either close Pennhurst or justify its continuance is what you should do."

One month later, Jim Wilson, president of PARC, and later of the national ARC, and Dennis Haggerty, Chairman of the Residential Services Committee, appeared in my office. They had not known that my brother, Bob, is retarded and had lived for some time at Pennhurst. If I would undertake what they asked, they promised me a guide and a mentor. Dybwad, huh?

He must be okay. He's Peter Dybwad's father.

[Laughter]

During 1970, we look at four kinds of litigation. PARC chose to sue for the right to education. What, you may wonder, did education have to do with closing the institution? PARC had noticed that nearly everybody went to the institutions when they were children of school age, most in their early teen years. They thought if we opened the schools, we will fade and end the demand for institutions, and they were significantly correct.

In 1970, 12,000 children of school age were sent to institutions in these United States. By 1978, only 1,200 were, and now we are not at zero but we are tending. Moreover, to teach the courts about retardation was enough of an undertaking. Best, we thought, to do so in the context – in a context which they understood, the schools. They knew of the schools because of Brown v. Board of Education and all that followed, the unanimous Supreme Court decision which held segregation on grounds of race to violate the equal protection clause of the 14th Amendment of the United States Constitution. Moreover, Brown was the trump.

Soon after the Supreme Court's decision in Brown, early in his tenure as NARC. executive, Gunnar had called attention to the Supreme Court's decision, suggesting that what Brown sought to do for black children had enormous possibilities for children with disabilities, as well. Brown said, "… education is required in the performance of our most basic public responsibilities. It is the very foundation of good citizenship."

Today, it is a principal instrument in awakening the child to cultural values, in preparing him for later training, and in helping him to adjust normally, normalization, to his environment. "In these days," the Court wrote unanimously, "it is doubtful that any child may reasonably be expected to succeed in life if he is denied the opportunity of an education. Such an opportunity where the state has undertaken to provide it to any is a right which must be made available to all on equal terms." Hence, the strength of the claim.

We learned later that John W. Davis, who had represented the defendant State of South Carolina in Board – Brown v. Board of Education, a man who was congressman from West Virginia when Gunnar was born in 1909, who was Solicitor General of the United States when Gunnar was four, who was the Democratic candidate for president when Gunnar was 24, and before Gunnar married Rosemary, had three times turned down appointments to the United States Supreme Court.

Davis was a man steeped in his times. He opened his argument to the Court in Brown as follows: "May it please the Court, I think if the appellants' construction of the 14th Amendment should prevail here, I am unable to see why a state would have any further right to segregate its pupils on the ground of sex, on the ground of age, or on the ground of mental capacity.

Davis lost the case but he won the prediction.

[Laughter]

[Applause]

On October 9 of 1971, the front page of The New York Times reported, “A special three-judge federal panel ordered Pennsylvania today to provide a free public education to all retarded children in the state. The court ruled that all are capable of benefiting from an education and have a right to one.” The New York Times, on page one, quoted Dr. Gunnar Dybwad, Professor of Human Development at the Florence Heller Graduate School of Brandeis University, an internationally known authority on mental retardation, who said, "The decision makes Pennsylvania the first state in the union to guarantee education and training to all of its retarded children now and in the future."

Four days later, on its editorial page, The New York Times called on the Congress to do that for all of the states of the United States. Within two months in the House of Representatives, and another month later in the United States Senate, what became section 504 was introduced, and moments later, what became the Education for All Handicapped Children's Act of 1975.

A year later came Mills, and then in Louisiana, LeBank and Spears, and then another 32 cases. At the heart of PARC was the equality principle, Gunnar's citizenship, Gunnar's equal citizenship, the principle that presumptively insists that the organized society treat each individual as a person, one who is worthy of respect, one who belongs. Stated negatively, the principle presumptively forbids the organized society to treat an individual either as a member of an inferior or dependent caste or as a nonparticipant. As Gunnar put it, in a word, people with retardation cannot be treated as non-people. As he put it, the long struggle of people with retardation has been to be members of the community, not just in the community.

Now, understand, there was a contending legal theory. It arose from the due process clause of the 14th Amendment, not from the equal protection clause. It said that if a person's liberty is taken, he must get something back, a right to treatment, for example. A right to habilitation, perhaps in the least restrictive environment but restrictive, nonetheless.

Wyatt embodied that theory. Gunnar contributed mightily there, too. It was in Wyatt where he famously said, Partlow et Partlow, (sic) it is storage. There is no evidence of any human caring. But Wyatt resulted mostly in the fix-up of the institution.

By 1974, Willowbrook had been filed but the remedy sought in the original filing was fix up the institution. In Pennsylvania, some individual families had filed Halderman. They sought to fix up Pennhurst.

Gunnar took the occasion of mentally retarded citizens and the law to the 1974 PCMR Ohio state conference. The book, 1976, still the Bible to publicly reject such equivocation. He was commenting upon Yale Professor Boberg's paper contrasting the equality principle of PARC with Wyatt's substantive due process. Gunnar followed a commentator who had said, "We must avoid inflexible decisions that ultimately may be harmful. All or nothing, either/or must be avoided."

But of course, in Gunnar's view, it is either/or. Gunnar said, if the Partlows and Willowbrooks are to be eliminated in favor of community alternatives, we must determine what kind of in-community resources should be mandated.

So, in 1975, PARC, by then citizens, not children, intervened as plaintiff in Halderman v. Pennhurst State School and Hospital was to complete its 1969 resolution to show cause why Pennhurst should not be closed and replaced entirely with human scale community integrated living arrangements and supports.

Judge Raymond J. Broderick, who died just a year before Gunnar, filed his Pennhurst opinion on the eve of the eve of Christmas of 1977. The Christmas morning banner headline in the Austin Texas Statesman American was "Public Institutions for Retarded Ruled Unconstitutional."

It was Gunnar's testimony for PARC that Judge Broderick cited for the revolutionary proposition which was at the heart of his Pennhurst opinion, the proposition which Gunnar had stated as the simple truth.

"Given," Gunnar and the Court said, "appropriate community facilities, all the residents at Pennhurst, even the most profoundly retarded with multiple handicaps, should be living in the community." (Dybwad notes of testimony, volume seven, page 68).

From there, there followed -- and Gunnar was present at nearly all of them -- Michigan, Plymouth and all; Ladd School, Rhode Island, Laconia, New Hampshire, Pineland, Maine, Mansfield in Connecticut. Southbury is now under submission. Gunnar's beloved Massachusetts, surrounded now by states without institutions or about to be without institutions, still has six public institutions open. Surely there would be no more fitting tribute than for Gunnar's circle of friends here to complete here the job that Gunnar so mightily advanced all around us.

[Applause]

New Mexico became the first state west of the Mississippi without an institution on July 4th, 1996. Wyoming and Alaska have followed. Tennessee is under orders to achieve that status. Now, Tennessee is the first case – three cases, actually, run entirely by a People First organization as plaintiff, and it was Gunnar's last courtroom testimony. Let me tell the story as my partner Judy Grande, who represents People First of Tennessee, tells it.

It's 1995. Gunnar is visiting Susan in Nashville, Ed Sewell and Judy Dee. Ed Sewell, the President of People First of Tennessee. And Judy picked him up and set out on the most wonderful trip to Memphis. Never had so much fun. They talked about everything. Stopped for fast food. Gunnar was in heaven.

[Laughter]

By then, Ed and Gunnar had become fast friends. Got to Arlington. The most they could do was drive around the institution. People First had been barred from entering the institution. That was before the court's First Amendment order guaranteeing them access. Gunnar went to his full alert mode. His antenna for picking up things went up. He was wracked, looking as hard as he could to see if he could possibly see a person.

Fascinated by every little trace, every trace. You could feel his compassion and sympathy and desire to do something. His way of connecting with people, even though at such a distance, and without the opportunity to talk with them. "Oh, thank you," he said, "thank you, for taking me here."

The next day, Gunnar took the witness stand. He talked about his visit to Arlington, what a beautiful day it was, not a single person out of doors enjoying the day. The only people you could see were behind doors, behind windows, looking out. He conveyed to the Court this incredible sense of desolation. Now the judge began to understand what it was like to live there. The judge had been very deferential to institutional parents, skeptical of this collection of people called People First.

Gunnar vouched for People First. He talked about why they were motivated to bring this lawsuit, that they were real people with real issues who were driving and directing the lawsuit. How People First grew out of the parents' movement, that it was natural, generational, that nationally the self-advocates had grown up in an environment of education, which their parents had fought mightily, Gunnar said, rebelled in order to get. Once experiencing such a richness of life, they would not abide the institutions. Most everyone in this room has had this experience of Gunnar. The infectious insistence, the blinds lifting from the eyes, the vivid connections, the willingness to do battle, the everlasting wisdom. We loved him for all of this.

Across all of the law, it is perhaps words of Justice Douglas in Papachristou v. City of Jacksonville which best expressed Gunnar's spirit and his service, what it is he sought and so largely succeeded in bringing to others. “The promise of a constitution of the United States," the Court said, "to each of its citizens," and Gunnar would say, as on nearly every occasion he did, "the promise of the universal declaration of human rights to each of the world's people, is independence and self-confidence, the feeling of creativity, lives of high spirits rather than hushed, suffocating silence.” God bless you, Gunnar, and thank you.

[Applause]