Tom Gilhool was never, strictly speaking, an autism guy. He never did much reading on it, never had relatives who dealt with it. Before he became involved, he probably would not have been able to say with certainty what autism looked like.
Not that it mattered in the long run, because Tom Gilhool was an underdog guy, a champion for the disadvantaged. He was also a smart lawyer. It was this combination that thrust him, in the early 1970s, into a decisive legal battle on the side of an organization known as PARC. It stood for the Pennsylvania Association for Retarded Children. It was these parents’ children Gilhool would fight for. The state had failed to provide them with an education, leaving the children whose families could not afford private school to languish at home all day, or to waste their days confined inside the massive state-run institution known as Pennhurst.
This was at a time before the word “retarded” had fully acquired its toxic connotations. This was also at a time when the parents of children with intellectual disabilities—as opposed to parents from the autism community—were the more experienced, battle-scarred trailblazers in the fight to reform how society responded to developmental disability. Their activism had begun decades earlier, with the founding of the National Association for Retarded Children in 1950, of which PARC was a state chapter.
In those years, the parents of children labeled “MR,” for mentally retarded, and the parents of children with the lesser-known condition called autism represented two separate camps, and were also to some degree rivals. They both wanted to be first in line for the attention of politicians, and they both wanted to be first in line for donor dollars. The divide between them gave rise to multiple ironies, as the two sets of kids actually showed a large overlap. In the late 1960s, for example, epidemiologists showed that roughly three-quarters of children diagnosed with autism were also intellectually impaired.
Yet certain autism activists, Bernie Rimland among them, seemed to prefer to keep a distance between autism and the question of intellectual disability. Like Leo Kanner in the beginning, Rimland believed that autism always came with relatively normal intellectual functioning. When making this case, Rimland betrayed some biases of his own, contrasting the “dull, vacuous expression” of the truly “feeble-minded” with the “beautiful and well-formed” child with autism, whose facial expressions he described as “strikingly intelligent.”
Another irony lay in the fact that the two sets of parents faced nearly identical obstacles. Institutionalization, as the default solution, had failed all of their children. So had the school systems. But in 1969, the parents from the MR side of the divide—the group in Pennsylvania—set out to force change by taking the Commonwealth to court, citing a dereliction of duty to educate all children. They did so without the involvement of autism parents, who were still only beginning to organize. But autism parents everywhere would soon owe a great debt to the group from Pennsylvania—and the lawyer they turned to.
TOM GILHOOL WAS not familiar with PARC when, in the winter of 1969, two parents representing the organization dropped by his office to discuss the prospects of bringing a lawsuit against the state of Pennsylvania, which owned and operated the Pennhurst State School. When Gilhool confessed to not even knowing what the letters of PARC stood for, one of his visitors, Dennis Haggerty, said, “Tom, I guess now I’m going to have to teach you about mental retardation.”
That’s where he was wrong. “Dennis,” Gilhool said back to Haggerty, “you don’t need to explain it, because my brother is retarded.”
It went further than that, actually. Gilhool had been out to Pennhurst many times during his youth. His mother had committed his brother Bobby there in 1953, the year Tom turned fifteen. Bobby was nine then. On visits to his brother, Gilhool had not seen a “snake pit” institution—not quite. He found the staff he encountered generally pleasant, and there were some attendants Bobby was particularly fond of. But it was clear someone was beating Bobby up from time to time. He would show up for visits with swollen ears, like boxers have. Tom was against keeping Bob in an institution at all, but after his father died, his mother, who belonged to a different generation, insisted it was best for him and for the family.
As he explained this to the two men from PARC, Gilhool could see past them, through the single long window of his narrow, corridor-shaped office, down to the neighborhoods of South Philadelphia. The streets of South Philly were where he had spent many years building his activist skills. A Lehigh and Yale man in bow tie and sideburns, he was part of that generation of young people who felt summoned to put some skin in the game by President John F. Kennedy’s challenge to “ask what you can do for your country.”
Gilhool, when he finished law school in 1963, was already planning to work on behalf of the disadvantaged, because of his brother Bobby. The great cause of the day was civil rights, so Gilhool dove into campaigns like the Philadelphia Tutorial Project, which brought tutors out of Philadelphia’s elite universities into poor neighborhoods; worked with Community Legal Services, a provider of legal expertise to the poor; advised a successful Welfare Rights Organization campaign to convince Pennsylvania’s governor to increase state assistance to needy families; and helped in the establishment of a network of “self-help centers” that negotiated a truce among Philadelphia’s street gangs, ending the most deadly streak of intergang killings in the nation at that time. In the changing role of lawyer as agent of social change, Tom Gilhool, at a young age, could boast plenty of battle scars.
The parents from PARC had sought him out for this very reason. They wanted a “rights” lawyer, and they wanted a “rights” argument. Constitution-based arguments were defeating policies like racial segregation in the schools and ensuring minorities the right to vote. In court, as opposed to legislatures and governors’ offices, it seemed that the weak stood a fighting chance.
PARC’s parents, for some time, had been demanding reforms at the Pennhurst School. Recently, the mother of a boy named John Stark Williams had only been informed of his death upon her arrival to visit him, although he had died nearly a year earlier. PARC investigated the school’s claim that he had slipped in the shower and discovered that he had actually died of burns. When confronted by a PARC representative, a school administrator responded, “Well, these things happen. We’ve got twenty-eight hundred people here.”
When that story was told at PARC’s annual convention in Pittsburgh that year, and slides from the autopsy were shown, the outraged group immediately moved to initiate proceedings against the state of Pennsylvania. Its goal was to force the state to shut Pennhurst down, or to require the state to demonstrate just cause for its continuance as a state facility.
The meeting in Gilhool’s office lasted two hours. A few days later, Haggerty picked Gilhool up in his car and drove him out to the state capital, Harrisburg, to meet PARC’s full board. “I can do this,” Gilhool told them.
GILHOOL WAS AN intellectual tortoise. He spent most of the rest of that year reading widely, talking with experts and activists in the field of intellectual disability, and thinking through the kinds of constitutional arguments that would move him, if he were a judge.
Nine months later, he thought he had it. He presented his clients with a nine-page battle plan whose key words were “the right to education.” Gilhool wanted to build an argument around the fact that children kept locked up in the so-called state schools were not really at school at all. He believed this would resonate in court because education was a topic on which federal judges had been well briefed in a long series of cases stemming from the civil rights movement. The denial of full educational services at Pennhurst, and in school districts across the state, Gilhool wanted to argue, amounted to a violation of the Fourteenth Amendment’s guarantee of equal protection under the law.
Such an argument would challenge all kinds of conventional wisdom. It would assert, first of all, that people inside institutions had full rights to begin with, and that segregation behind their walls amounted to a denial of those rights. He would also need to challenge assumptions that it was a waste of effort to educate people labeled “ineducable.” These seemed enormous barriers to get across. But PARC wanted to try, and so did Gilhool.
The surprise came in just how quickly the barriers fell. The trial commenced on August 12, 1971, eight months after Gilhool first filed with the court. A three-judge panel had set aside two days for argument. A large team of lawyers, representing the state, sat together at a table to the judges’ right. Gilhool, in bow tie as always, sat alone at the table opposite. He had seven witnesses to present—all experts on special education and human development. They had all prepared fastidiously, but in the end, some of them did not even get the chance to testify.
Early on the afternoon of the trial’s first day, after Gilhool’s first four witnesses had testified, an attorney for the state, the assistant attorney general of Pennsylvania, interrupted the proceedings and asked to address the court. “Your Honors, we surrender,” the opposing counsel told the judges. Gilhool was stunned. That was it. The trial was over.
The sudden surrender was prompted by a morning of compelling testimony from a variety of educators with impeccable credentials. These educators had worked with retarded children, been in classrooms with them, carried out research on their development, created innovative teaching programs—and they testified that they had always seen the kids learn, grow, and become happier. Each witness portrayed the noneducation of the kids as an unjustifiable and scandalous waste of their potential, and affirmed, from the front lines, that all so-called retarded children were capable of learning. What’s more, they came with empirical evidence so persuasive that, in the view of the judges, the state’s surrender was “an intelligent response to overwhelming evidence against their position.”
GILHOOL HAD WON, on behalf of the parents of PARC. Now he was handed a rare opportunity to sketch in the details of a better future for the mentally disabled of the state of Pennsylvania. He was delegated to write the first draft of a so-called consent decree—the document that, when an agreement is reached between two contesting parties, spells out what that settlement specifies. For two months, he labored over the terms, crafting a set of undertakings by the state and its thirteen school districts that would make a clean break with the past and a swift transition to the future.
Gilhool demanded, first, that every child in Pennsylvania who could qualify for the label “mentally retarded” be searched for and found—whether at home, at Pennhurst, at some other institution, or at school. The deadline for this was set for June of the following year, and part of its purpose was to let parents know their child was now entitled to a free public education. After that, school systems would be required to put together a plan specifying how they would begin offering each of them education and training, “appropriate to his learning capacities.” He made clear what this was supposed to mean: programs were tailored to the individual child, and the programs themselves were to be held in settings as “normal” as possible. Specifically, “placement in a regular public school class is preferable to placement in a special public school class, and placement in a special public school class is preferable to placement in any other type of program of education and training.”
The terms of the decree, which the state began putting into effect in 1973, were immediately recognized as a landmark advance for disability rights and education. The ripple effects were felt almost immediately as lawyers representing parents rushed to bring like-minded lawsuits across the nation. Most of them borrowed some of their intellectual framework—and, in some cases, exact language—from Gilhool’s Pennsylvania suit. By the end of 1973, some thirty federal court decisions had affirmed the principles established in Gilhool’s case. Meanwhile, legislatures in statehouses across the nation were starting to update laws to guarantee education for the mentally disabled through the public school system. State officials were making public pronouncements to show they recognized that the right to education was real, and that adjustments to the way things had been done for decades were required.
There was just one catch, in all this, for autism families: everything good that was happening all of a sudden, and in so many places, was driven by a sense of outrage on behalf of one distinct group of kids—those with so-called mental retardation. To be sure, it had been these children’s parents who pushed the legal action, and it had been these children’s plight, and potential, that had received unflaggingly sympathetic media coverage.
But unheard in the outcry was any mention of the terms autism or autistic. These terms were as unfamiliar to the larger public as kids with the condition were invisible. Overlooked in the outrage, they were also missing from the agenda of motivated legislatures.
It was clear what autism parents needed to do, to become part of this moment, and this important conversation. They had to change the subject, maybe a little, maybe a lot, to make their kids a part of it.