Visionary Voices Interview with Thomas K. Gilhool

Chapter 1: Early Career and Association with PARC 16:42:33:20 - 16:42:55:19 LS: Tom, I just wanted to introduce our interview by saying we are happy to be interviewing Tom Gilhool here at Temple University, today, September 28 [2011]. Also present is our videographer, Lindsey martin, and our student intern Rob Greenberg, and Tom, do we have your permission to proceed with the interview?

TG: You certainly do.

LS: Thanks so much.

16:42:56:00 – 16:51:34:01 LS: Tom, one of the things that I wanted to start off with was talking about some of your early work. You came of age professionally in the ‘60s, which was really an exceptional time in our country’s history. Johnson had declared a war on poverty, there was a civil rights movement, there was a war in Vietnam. And it seems as though these times were giving rise to a kind o a new breed of lawyer, a rights lawyer, and I wondered if you would describe yourself as a rights lawyer, and if so, what dew you to that type of work?

TG: Certainly I would, ummm, my wife and I, Gillian, were at law school from 1961 – 64, uh, it was an extraordinary time, uh, several classmates of ours at Yale Law school were deeply involved in the Civil Rights Movement, particularly the Student non Violent Coordinating Committee. Indeed, one had been sent to Yale Law School by his colleagues at SNCC, um, lest many of them be killed, he would be able to step in, in a serious and well prepared way. Um, those were the fears of that time. Another classmate of ours had been in the first set of sit ins in North Carolina, another was the right hand of the person who organized the March on Washington in 1963. I had come to Yale form Lehigh University and from the 1959 National Convention of the National Student Association, where all of us there were introduced to the Southern Student Movement, which was kind of [inimining?] then, and when the sit-ins began in early February of 1960, at Lehigh we gathered the first Northern action, demonstration, uh library steps, talking and sending telegrams to the Governor of the two Carolinas and so on, in support of the southern student sit-ins. When we got to Law school surrounded by these additional colleagues who had come directly out of the southern Student Movement, and were still very much a part of it, uh, as we used to say, we knew what was happening in the Civil Rights Movement before it was on the front page of the New York Times, because the network included us. And in the first year, uh, the undergraduates at Yale and a couple of us at the Law School had started what became known as the Northern Student Movement, framed initially to organize Northern University Campuses to support the South with money, with telegrams and such political support, uh and with people going South to work with them. Uh, about a couple of months in, Chuck[ McDew?], who was the first chairman of the Student Non-Violent Coordinating Committee, he said “we’re going to deliver Mississippi before you guys even touch Harlem”. And so, we marshaled to focus the Northern Student Movement upon real action in Northern Cities, uh, uh, originally around tutorial programs which most every major university in the country that was within reach of a major city, uh, ultimately joined, um, tutoring addressed to junior high school and high school students. Uh, and then that movement turned to organizing of a different sort, uh, in Virginia, for example, in Northern Virginia, Prince Edward County, the schools had been closed and the Supreme Court ultimately held that they were unlawfully closed. But while they were closed, the Northern Student Movement, with folks from Campuses like Temple and Amherst, and Williams, and all the rest, ran the schools, there, ran Freedom Schools. We had a union organizing project supporting, uh, some of the unions who were engaged with growers on the eastern shore of Maryland, awe had in Philadelphia, uh, the Philadelphia Tutorial Project, the first of its kind, headquartered at Temple University on the famous Park Street, uh, which over a good 15 years, engaged students in the Philadelphia School system and university students from here and, during summers form everywhere, in learning together and quite early, oh, by this time I was here, and in practice, in creating what were called self-help centers, about twelve of them around Philadelphia. Some of them were at the center of the Welfare Rights Organization, where people changed the face of poverty enormously in the late ‘60s, some were in intensive young peoples’ neighborhoods where in two years in the late ‘60s, we, the welfare Rights Organization, and the Self-help-Centers, ended gang killings in a city which in 1968 had been the country’s most mortal city in terms of killings of gang members, one of the other. All of that happened because they had been successful in bringing a Governor of Pennsylvania in intense quarterly negotiations, between the Welfare Rights Organization and the Governor, to raise public assistance grants from $1800 for a family of four to $3600 for a family of four, which was then the poverty standard. Families now able to things with and for their children that they could not do before were an important part of the undertakings that ended those gang killings. That’s a, that’s a slice of, uh, my work that precede the disability undertakings, uh, I had been chair of the Northern Student Movement, I was chair of the Philadelphia Tutorial Project in m early days in practice here in Philadelphia, and it is a fact that, uh, those experiences, uh, very much framed my approach to the Law, and to actions using the Law to advance the rights, our subject of today, of people with disability, and their families and friends. Uh, I was much informed by all of that, and when the ARC of Pennsylvania came to me, they came largely because of their understanding that I had been involved in such work, and they understood that they needed a lawyer who was prepared to imagine with them, and dream and act on those dreams with them, to kick over the traces and restructure the world which had so thoroughly confined them.

16:51:34:03 – 16:54:41:08 LS: Tom, prior to being approached by PARC did you feel attune to the struggles and particular needs of the disability community?

TG: I did indeed, my uh, uh, my brother, uh, I was going to say my youngest brother, but he’s my only brother (laughs), the third of the three of us, is developmentally disabled. Uh, he was born in 1944, and, um, um, we, umm, we shared is experience, uh, of the late’40s and early ‘50s, seeking to find, uh, for him, some education and some points of engagement in the community an, and for my parents, some, some support in their undertakings. And I vividly remember the, the couple of days a week when he, for a couple of hours a day, went to a school in Lower Merion, the Lower Merion Township School District, um, uh, I can almost call the name of the teacher, uh, and I can remember as well that when all o the other children in the neighborhood, uh, we all lived together on Rising Sun Road in Ardmore, uh, when all of the other children had gone off, to first grade in those days, at least for parochial schools, and it was pretty much a parochial school kind of neighborhood – there were no kindergartens, when they had gone off to first grade, my brother was without playmates, until uh ,uh, the young man who was the child of a woman who helped my mother around the house several times a week came with her and engaged Bob, became his friend. And when I was called upon at the first meeting in the basement of the Berean Institute in Philadelphia, to explain what I was doing here, why I was involved in the Northern Student Movement and the Philadelphia Tutorial Project, and seeking to assist in some way the Civil Rights Movement of the late ’50s and the 1960’s and ever since, I explained it in significant part in those terms, that, that my interest my experience of race came from that support and solace which this young man offered to my brother. And so they did not know I had a background in retardation, uh, when they came to my office, but they quickly found out.

Chapter 2: PARC Approaches Gilhool 16:54:42:00 – 17:09:19:14 LS: Can you describe that first meeting with Jim Wilson and Dennis Haggerty, what it was they asked you to do and I think also, I’m curious, was it their stated goal at that time to close Pennhurst?

TG: Well, that’s a very nice question that I have pondered a lot, and I think there are different senses of how playing and how still developing their ultimate objectives were. I can describe the scene, right? I was a young associate, two years, maybe two and a half years into practice, having graduated from Law School in 1964, at Dillworth, Paxon and [Kaliesh?], Cohen and Dilkes, the Philadelphia Law firm of Philadelphia’s great reform Mayor of the 1950’s. Uh,it was a long narrow office, um, and , uh, with one window looking out on South Philadelphia, um, and uh, Jim Wilson, the President of the Pennsylvania Association of Retarded Children, as it was then called, and Dennis Haggerty who had chaired the Residential Services Committee, and, and the then recent, the most recent, because there had been many since the late ‘40’s, when this ARC, like most in the country, was first founded, of Pennsylvania’s flagship institution, which had been commissioned by the legislature in 1913 explicitly to segregate people – they didn’t say people with disabilities, or people with developmental disabilities, or anything like that. It was to segregate the ‘idiots’, ‘imbeciles’, uh, and ‘feeble minded’ – the ‘feeble-minded’ word was all over the legislation, and as well the ‘epileptics’ and the ‘palsied’ , uh to segregate, explicitly, its objective the institution was created. Uh, and they had just completed their most recent, uh, investigation, of, uh, Pennhurst, and had found conditions there still nasty, brutish, and of short life,um,um,and they had resolved to borrow a leaf from the Civil Rights Movement of Black people, uh, and, uh, to think seriously about how they might use the courts to advance the life situation and the life chances of people with retardation. Um, and they came to me because I had come back to the Dillworth Office from practice for three years at Community Legal Services, the War on Poverty Legal Services Program, and had represented the Welfare Rights Organization ad Public Housing Tenants’ Organizations in many undertakings in the courts and litigation and Governor’s offices and in negotiations, and in the media and in the public media and so on. And it was that willingness to suspend disbelief and pursue what might be, might be gained from the Law that uh, bought them to me. Uh, Uh, Dennis I had known; I had actually succeeded him as the Chair of the Public Services Committee of the Philadelphia Bar Association a couple of years before when Community Legal Services as just being formulated. Jim was, uh, a new and now longstanding friend. Uh, and they asked if I would look at their report and advise them on what cases might uh, arise to alter the situation. The conversations over the next year, year and a half, as I explored with them the possibilities, with them and with Gunnar Dybwad, their long time advisor a man who had been the Executive Director of the National Association for Retarded Children in the 1950’s and who was now a professor at Brandeis University. The Pennsylvania Association was his favorite Association because Harrisburg had a greasy spoon on the Main Street that he couldn’t resist (laughs), and so he was always coming back. Um, um, as we explored the possibilities, it became very clear that the purpose of the ARC was to get rid of the institutions, um, they concluded form their experience in trying to improve them that that was not possible. Um, and later, they proved that by Frank Laski and Ned Stutman’s and Carla Morgans and Nancy Zollers, and Eleanor Elkins and my hand in the Pennhurst case. But the first thing we noticed as we were talking and exploring was the data that showed that nearly everybody in the segregated and remote dreadful public institutions had gone there when they were in their early teens. Well that’s the time when children as everyone with experience with children knows, begin to reach out to try to take control of their world, and shape it themselves, and most children, of course, and their families, had, schools also (laughs) as well as families, but retarded children and other disabled children did not have schools, and, um, indeed, there was nothing of much use to families in the community. The ARCs, the county chapters of the State ARCs that existed in pretty much every state in the country, um, we doing their best to create schools, but not all on the scale, um, that could serve. So, um, I, we put together a list of four or five undertakings in the court that might advance the ARCs objectives. One of them was what became too traditional for a little while, Right to Treatment suits addressed the institutional conditions, which were intended to improve the institutional conditions, that was not an approach that commended itself to the ARC given their intimate and long experience with the Pennhurst Institution and other among the institutions in Pennsylvania. There was some thought about litigation which was later brought, and successfully, to require that states pay the people who lived at the institutions who, in largest number, worked there, in the farms, in the kitchens, on the grounds and so on. That was a [Peonance?] lawsuit that came directly from the 13th Amendment to the United States Constitution, the Civil War Amendment that abolished slavery and forbad [peonage], uncompensated labor. Um,uh, and the theory of that case would have been, well if we get then paid, then they can buy their own way out of the institution, and into the community. And there came to be many such suits and they were almost all successful, and it had a couple of effects (laughs), one, it did cause a significant number of people to be paid, and t o be able to lay some money aside and undoubtedly helped ease their way into the community when it happened, but mostly it raised the price of the institutions, the cost of the institutions, and it became increasingly attractive therefore, to the states perhaps, to think about stepping out of those institutions. There was a third lawsuit that, uh, ultimately the ARC’s political action took the place of. It would have been a lawsuit in state court. The Pennsylvania Legislature in the late 1960’s, probably ’69, ’70 had appropriated 21 million dollars to fix Pennhurst up. And this lawsuit would have, in state court whether that was not irrational and hence a denial of substantive due process since spending that 21 million dollars to quote ‘improve the institution’ would not have any significant effect. Um, we did not bring that lawsuit as it happened, but uh, the Pennsylvania Association for Retarded Children, still, engaged the Governor and the Lieutenant Governor in conversation asking them to take that 21 million dollars and spend it instead on community services. And they engaged a brilliant former Texas institutional superintendant, longtime Delaware educator named Floyd McDowell, to create a typology of community residences, uh, for people with disabilities, uh, particularly for retarded people. And that, um, undertaking was very important when in the late 1970’s the Pennhurst suit was filed to replace it directly with community services because this typology and that 21 million dollars had allowed many people to leave Pennhurst. The Pennhurst population at the time of the ARC’s investigation was in the two thousands, somewhere, by the time of the late ‘70’s trial, it was 1100 people. And the other had all gone to one or two person, uh, community living arrangements in Pennsylvania. And so the Institute on Disability, Jim Conroy and the wonderful graduate students who were around then put together what we call the Twin Study, matching every one of the 1100 people at Pennhurst with at least one and sometimes two and three people who were functional twins, a similar configuration of disabilities, a similar number of years at the institution, uh, and so on, in order to show that everyone in the institution could make it in the community given proper community services and supports. So that third piece of litigation, which was considered, had been brought home and had considerable yield for advancing the movement that PARC was eager to and did initiate. But we focused particularly on the schools because everyone in the room at the ARC had had the experience of being unwelcome in schools. And nearly everyone had had the experience of their own children or brothers and sisters being dismissed, uh, excluded, uh, there for play school and nothing more and that in a very limited number of hours, and had had the experience that when the children began to reach out and in the nature of things became troublesome to the rest of their family and the rest, and the families had no other ways to del with their newfound interest in the world, had led to so many institutionalizations. So, we settled upon addressing access to the schools, as the action of choice.

17:09:19:25 – 17:12:24:00 LS: So, despite the deficits in the education system for children with disabilities, despite the appalling conditions at Pennhurst, there were plenty of PARC members, and PARC membership was comprised entirely of families, parents..

TG: (nods) Yes.

LS: there was considerable fear about suing the Commonwealth… TG: Oh, yes, yes.

LS: the PARC membership was much divided, as a sibling yourself, I’m sure that you could understand some concerns. I wonder if you could talk a little about what the members’ concerns were?

TG: It had not been an easy decision in the ARC to consult a lawyer and resolve to use the law at all, and when the choices were posed among pieces of litigation, the edge was even more strongly on it, why? Well, litigation in the United States is frequently regarded as kind of a declaration of war on the uh, by one party on another. Uh, it’s not that, it’s not understood to be that, uh, in the world of commercial litigation, but in the public world it’s often felt to be that. The situation of families with children with disabilities, uh, put a special point on it, because for the little solace and the few services that they gathered, they depended upon the, uh, the State Department of Education, and the School District, and upon the State Department of Public Welfare, and its instrumentalities, and uh, it was very hard for them to imagine that any good could come out of suing the very people upon whom they depended for services. And this was a wrenching decision for very many, and, uh, I remember particularly, and early, national president of the ARC, she had also been a Pennsylvania President [Eleanor ], who couldn’t abide it, and thought it necessary, and so she did, resign from the ARC of Pennsylvania and nationally. It was a very difficult decision, uh, but it was taken with great care, and a great deal of courage and heart by the leadership and the state chapter, and the members of the ARC.

17:12:24:12 – 17:13:01:28 Technical discussion by crew.

17: 13:03:27 – 17:13:39:03 LS: So Tom, when Jim Wilson and Dennis Haggerty approached you, did you have any reservations about becoming involved?

TG: (Shakes head) Not, not a one. I was delighted, and, and uh, very luck that they had come to me. It was just a wonderful experience to work with the people of the ARC, uh, and to have the opportunity to do together these very important things.

Chapter 3: Right to Education Case 17:13:39:15 – 17:28:10:01 LS: So, the Right to Education Case, the PARC Class was a class action suit. Can you tell us for people who may not be as familiar with the case, who the class members were and how they were selected?

TG: Well, they were, it was actually a class action suit in two ways – there were two classes in the case, one of which is quite familiar, and that is the class of plaintiffs. The individual, uh, families who sued on behalf of their child, uh,uh, sued also on behalf of all children in Pennsylvania who were similarly situated, that is to say children with retardation who had been excluded from the schools, school district by school district, among the couple of hundred that there were then, and under state law. So that was one class, the class of plaintiffs. The point of doing that is because at the end of a class action, or sometimes along the way, if you are successful, the defendants have an obligation to reach out to all the members of the class and inform them of the new law that has been found by the Court and the orders which are intended to benefit their children so that nobody gets lost. Uh, then some very special things happened at the hands of the orders of the court and the ARC’s actions to be sure that no one was overlooked or lost. It was also uh, framed as a defendant class action. The kids and their families were the class of plaintiffs but the class of defendants were, um, forgive me, seven or eight school districts, the school districts of the families, whom we sued. And of course we sued the Commonwealth of Pennsylvania and the Education Department and all of those who were responsible on a statewide basis for the administration of the laws. Um, but we sued the class of all school districts in Pennsylvania as represented by these eight individual school district defendants. And the reason for that, will immediately appear to everyone who is listening. It’s one thing to conduct a piece of litigation – its one thing even to win the litigation- but none of it avails anything unless the orders of the court are carried out. And one of the benefits of a defendant class action is that you thereby have in front of the court every school district in Pennsylvania. This resulted after the initial orders of the court in a way that is customary in class actions of notice to the individual plaintiffs, the families all over the State, but also notice to every school district of the initial preliminary orders, and, and, they were all informed, defendants and plaintiffs alike of their opportunity to come before the court and object, if they wished to. (17:17:23:22) Several school districts did and that, in fact, was very helpful to the ultimate outcomes in the real world. Because several sets of school districts did come in with counsel and presented witnesses and made their objections, and we had the opportunity to talk with the three (17:17:48:04) judges, this was a federal, three-judge court, about it, and that conversation resulted in another opinion from the court. And all of this happened very much in the public light, and those conversations were spread fairly far by the media of those days, uh, and having those conversations, and each school district having had the opportunity to object, sort of bound them I more tightly, to actually doing it, uh, or being persuaded and, uh, to do it after the orders came. Uh, so it was a class action, it was a class action in both ways, but the subject matter, unless you want to go somewhere else, of the case, was really a set of laws of the state of Pennsylvania from the earlier part of the twentieth century. Uh, Pennsylvania, like every, without exception, every state in the United States had, at the turn-in to the twentieth century, driven by the hysteria, its – the word fits- at, or what was then the largest immigration to the United States. It was the immigration of Italians and Eastern Europeans and Jews – the Irish had come earlier- and the immigration of the 1990’s and the 2000’s is still a bit larger, but that was the largest immigration ever, and it was met, as all immigrations have been in the United States (laughs ironically), uh, hardly anyone was welcome, we managed – it’s the greatness of the country that we managed to overcome that anguish and, and, become a society of enormous strength because of our diversity. But that immigration and that alarm arose at the time when some false social scientists – maybe they considered themselves biological scientists – invented something, really invented something I regret to say, in the United States – eugenics, that is to say the sense that all of human behavior and human capabilities was formed by inheritance, genes, and all the rest. And this had, it was the eugenics movement that had given rise to these institutions, that every state but Nevada had, and Nevada borrowed California’s , uh had created to segregate these ‘defective’ and criminal alarming people, the large number of them children of immigrants who were the ‘feeble minded’. Every state in the country had a pamphlet or a couple of pamphlets because at the turn in to the twentieth century, we’re still, still a lot like Thomas Paine, and conducted a lot of our public discussion before radio, before television, in pamphlets. And the Pennsylvania pamphlet in 1912 was ‘The Menace of the Feeble Minded in Pennsylvania’. Uh, the pamphlet in Ohio in 1915 was ‘The Feeble Minded: The Hub to our Wheel of Vice’. And so it went all around the country and the first product were the laws establishing the institutions to segregate. But momentarily, in every state, uh, the institutional segregation laws, um were followed by laws which, uh, required school districts to identify and exclude the ‘uneducable’ and the ‘unattainable’, those who had mental age less than five, and those of you who still know how to calculate those things will understand that a very many, great many children had mental ages of less than five, particularly when they were five and first applied to schools, uh, and surprisingly enough in the middle of that biological silliness, there was actually some sense, uh I say this because the concept of mental age is still very much used against people with developmental disabilities, but it’s used in a way that is a thorough misrepresentation of it, the people, including the people whom by their own misguided lights were responsible for a lot of these laws, uh, it was understood that, that mental age did not mean that you would forever be five, if that was your mental age, it meant that you learned at the rate of five year olds, very different, very different point. Of course, all of us who have known five year olds very well know what curious people they are (laughs) and, and how quickly they learn when they are focused and supported. So Pennsylvania had a series of statutes which excluded kids form the schools. They did require that the Superintendants of Schools everywhere, as they were excluding the children, should see to it that they were brought to the attention of the institutions so that they could be segregated, and they did provide that after they were taken from their families to the institutions that families should not, and were prohibited from visiting for the first six months, sometimes a year, sometimes two years depending upon the state, so that the ties could be broken. Thurgood Marshall who was the lawyer for the plaintiffs in Brown v. The Board of Education, uh, uh, and was a Supreme Court Justice from 1965 until the late ‘80’s into the ‘90s, in a very important case from Texas, the city of Clivern Texas v. the Clevern Living Center, had the occasion, informed, I’m happy to say by a brief that was done at the Public Interest Law Center of Philadelphia, by all of my colleagues there, and myself, to, uh, over three pages write for all of history, and for the knowledge of those who were not alive at the turn in to the twentieth century or in the time when these developments were so reshaping the world for families and disabled people. Uh, he memorialized in ways which I hope each of you will read, that time (reaches down for paper). Let me just read a little bit from his opinion. Um, he wrote, “the mentally retarded have been subject to a lengthy and tragic history of segregation and discrimination that can only be called grotesque, fueled by the rising tide of social Darwinism, the ‘science’of eugenics, the xenophobia of those years. Leading medical authorities and others began to portray the feebleminded as a menace to society and civilization responsible in large degree for many if not all of our social problems. A regime of state mandated segregation and degradation soon emerged that in its virulent and bigotry rivaled, and indeed paralleled the worst excesses of Jim Crow. Massive custodial institutions were built to warehouse the retarded for life. The aim was to halt reproduction of the retarded and nearly extinguish their race. Retarded children were categorically excluded from public schools based on the false stereotype that all were uneducable, and on the purported need to protect non-retarded children from them. State laws deemed the retarded unfit for citizenship”. Well, it is this regime which the disability movement, the parents movement in the disability movement largely in the first days, and then increasingly the movement of people with disabilities themselves, it is this regime of state mandated segregation and degradation which starting with the PARC case, starting with the extraordinary courage of the Pennsylvania Association for Retarded Children, challenged, and overturned.

Chapter 4: Brother’s institutionalization influenced Tom’s thoughts on Right to Education case 17:28:19:11 – 17:32:10:25 LS: Tom, I’m really struck by, well there was so much in the opinion that you just shared, and what you’ve just discussed, and two words that you talk about keep coming back to me, the idea of these broken ties within families. I don’t want to assume, but since your own brother, your brother Bobby was also living in a segregated facility at one point, I’m wondering if your own experience with these broken ties influenced your thinking about this case, or perhaps your drive to succeed in this case?

TG: Oh, absolutely, absolutely! My brother was at Pennhurst from 1954, a year after my father died, and we all moved back to Scranton, Pennsylvania, to the early ‘60s, when he moved from the Whitehaven Institution, and it was in the early ‘90s that he moved to the community in Pennsylvania, an most particularly in Philadelphia, where he has lived these twenty years since, and by and large had a wonderful time. Yes, that experience informed all of it, as Bob tells me very often, “you and I closed Pennhurst!” (laughs),uh, he’s very proud of it all, though he, on occasion, as a year or two ago when some of our Japanese colleagues in the movement came to visit here in Pennsylvania, they very much wanted to see Pennhurst, and I asked Bob if he would like to go and he said, “ No way!” In some ways the most revealing expression on his part of, uh, about those years – he had a very dear friend who was at Pennhurst with him, Mary Jane Leonas, who died much too young a few years ago from breast cancer. She had come out of Pennhurst quite early, and living with, along with a couple of other women from Pennhurst, living with a Black family in North Philadelphia. When the Pennhurst trial was on, in the spring of 1977-78, there was a transportation strike in Philadelphia, and she walked everyday from 26th and Lehigh to 6th and Market, which was a goodly number of miles. My brother came down from Whitehaven to sit in on the trial one day and he had no sooner crossed into the threshold, then Mary Jane, who usually sat amongst the Pennhurst employees, on the defense side, uh, saw him and said, “Bob!”. And he said, “Mary Jane!” And they took up their relationship again, and were close friends until, until, until she died. But on one Saturday afternoon we were wandering through a bookstore in Philadelphia and it was a bookstore that had a lot of posters, and they both spotted and burst into great gales of laughter a poster of Elvis Presley and Jailhouse Rock. Because it turned out, it was a song of the ‘50s, and it caused them to call Pennhurst colloquially, Jailhouse Rock. That was their feel about it.

17:32:12:00 – 17:32:21:07 Technical Discussion with crew

Chapter 5: Right to Education heard in Federal Court 17:32:22:20 – 17:37:34:01 LS: Ok, um, I’m going to go back and ask you about a couple of things related to PARC. The case was heard in Federal rather than state court, and it was heard, maybe unusually?, by a three judge court.

TG: Yes, it was heard in Federal Court and by a three judge court because, um, the statutes of the United States require that any assertion that the law of a state may be unconstitutional must be heard by three judges, not just one judge. It’s a part of taking due care when addressing the states, but taking care to address the states. And our three judges were Tom Masterman, no, Masterson - Masterman is Pennsylvania’s greatest school, finest school, it happens to be a public school in Philadelphia. The judge’s name was Tom Masterson, he had been a member of the school board of Philadelphia. Uh, the next judge on board was, uh, Raymond J. Broderick, who had been Lt. Governor of Pennsylvania who during his unsuccessful campaign for Governor had twice helicoptered into Pennhurst onto the grounds, who had a long time talking relationship with the Philadelphia ARC, and whose daughter at Pennsylvania State University was dating a young man who in one of those first 21 million dollar community living arrangements worked there, and he had accompanied him and the retarded people who lived there and his daughter to basketball games at Penn State. He later went on to be the single federal judge who decided the Pennhurst cases. The third judge was Arlen Adams, a very distinguished court of appeals judge. The other two were district court, typically – trial judges. The court of appeals is the next level up before the United States Supreme Court. Arlen Adams widely regarded as among the most distinguished court of appeals judges in the Country. He had been, uh, one morning in about 1969, thereabouts, maybe it was in fact ’73, after these cases had been tried and decided, uh, he had the appointment to the united States Supreme Court, uh, he had got the Majority Leader of the United State Senate, the Republican Majority Leader in those days, had called him in the morning to tell him so, and had to call him back later that afternoon to say, “I’m sorry, Arlen, it’s gone to uh, to uh, Rehnquist”. In any event, Arlen had been a Chancellor of the Philadelphia Bar Association, and had been by appointment o Governor Bill Scranton, Secretary of Public Welfare, of the Commonwealth of Pennsylvania, and so each one of the three judges, and it was at that time characteristic of Federal Court judges, had such an experience of life that they understood how laws and complex institutions interacted with each other, and were able to hear and see on a trial record what was going on, and were able to make judgments about what in the context of complex institutions a law should mean if it was to be real, and were able to make judgments about what orders could as a practical matter in such contexts actually achieve. The values which the Constitution or the laws of the United States had put before them and under our Constitution essentially said to judges, these are to be made real.

17:37:34:04 – 17:40:17:15 LS: Earlier on you were talking about sections of Pennsylvania’s Education code that use words like uneducable, untrainable. While you were researching this case did you come across any explanations or reasons that schools might have given for not teaching children?

TG: Oh sure! The regime was all of a cut. It, It… these folks couldn’t learn, they were, and all of us, doomed to very criminal and unproductive lives that would interfere extensively across society. Um, um, they were a burden to the race was a familiar phrase from those days. Um, that’s, you know, it was deep-seated – nearly universal in our world, around the world prejudice. It was a set of conditions which in the late 19th century got such attention that our society resolved that people with disabilities like slaves before the, should be accepted from the fundamental American Constitutional commitment to equality. Um, it was a given, it was a given. Not many people were troubled by it for the first fifty years of this regime, right through the ‘60s and into the ‘70s. And it was in many ways the other equality movements, of blacks, of women, of poor people that characterized the 1950’ and the 1960’s in these United States that prepared the way, if you will, for the equality movement of people with disabilities and their families and friends.

17:40:18:00 – 17:50:00:16 LS: One of the people who was troubled by these conditions was Gunnar Dybwad…

TG: Yes

LS: in preparing the PARC case you had access to really some of the progressive minds in this movement. And I wondered if you could speak to Gunnar’s contribution and perhaps others who made contributions?

TG: Its, they’re…they’re beyond speech! I mean Gunnar (laughs) was the heart and soul of this case. As indeed was Eleanor Elkin, as indeed was Dennis and Jim and Pat Clapp, and the families of each of the individual plaintiffs. Ah, but Gunnar, uh, he came out of Nazi Europe. He came to the United States in the very late ‘30s, um and there’s a certain parallelism there. The ARC as an organization came out of World War II. It was founded by returned veterans, many of whom had participated in the liberation of the European death camps. And many of them came to be parents of children with retardation, and many of them came to see these institutions and saw the parallels immediately and from the beginning were alert to how unfortunate that was. Gunnar, uh, when you write a complaint, you try to write it so that any judge who reads it will, uh, before he finished reading, kind of say to himself or herself, “I think I’m probably going to have to rule with the plaintiffs”. And you try to write the complaint both in its statement of the law that governs, as in this case the equal protection clauses of United States Constitution, there in the fourteenth amendment, the equal citizenship clauses of the Fourteenth Amendment, and the facts. Gunnar and I worked it through and decided we would entitle ‘Ed’ if you will, the opening section of the complaint which described the plaintiffs, the non-education of so and so and so and so. And so each of the individual plaintiffs – that’s what it said. The non-education of… And Gunnar, attune to, as all of us were, the stereotypes abroad in the land in the 1970’s, was at pains to suggest that we not say “Suzanne Moskovitz has an IQ of 58, but should say instead “Suzanne Moskovitz has been assigned an IQ of 58”. And that approach to preparing the testimony as well as the writings, whether complaint or briefs or what have you – that approach pervaded. And Gunnar, who was himself a European JD before the United State ever had JDs, uh, was a most delightful inventor on that front. It was our chief concern that is to say how the popular stereotypes might affect the three judges. Indeed, these considerations were very important when the Pennsylvania Association for Retarded Children chose to pursue the education suit, uh, because if we were to go after the institutions directly, we would have tow tasks. One would be to teach the court about retardation, and the second was to teach the court about institutions. But since Brown v the Board of Education, the courts had been significantly involved with the public schools, and so half of the job was done. But they didn’t know about retardation, its history or the stereotypes which accompany it, many of which might actually be theirs. And so that was our major undertaking, was to pierce the stereotype and the history, and to demonstrate that retarded children had enormous capabilities and that these laws came out of ignorance and so were suspect to begin with, constitutionally, under the Constitutions of the United States, and particularly offended the equal citizenship provisions, which carry a special force because it was our first and most fundamental commitment as a nation to equality, the commitment which Jefferson formulated, here in Philadelphia so long ago. It’s worth knowing that Jefferson had a retarded sister. We did not know this until a decade or two ago, we didn’t know it until after the PARC case was decided, but a wonderful historian at UCLA , she died at an early age, but she wrote a wonderful biography of Thomas Jefferson, ‘Jefferson: An Intimate Biography’, it was the biography that discovered Sally Hemmings and was vindicated later by the science, she, he, she concluded from his daybook , his daily diary, and the provisions he made for his sister, and for her care that his sister was retarded. And we later discovered as well, we did not know, and neither Gunnar Dybwad, nor I, nor any of us, though Gunnar, just after Brown v. The Board of Education was decided by the United States Supreme Court, holding unconstitutional the segregation of people by race, wrote in the national ARC journal of which he was then the Executive Director, ‘this case has enormous implications for family and children with disability. Um, lending truth to that insight, we discovered that John W. Davis, who had argued Brown for the defendant state of South Carolina, the greatest appellate advocate of his generation, three times asked to take a Supreme Court seat – three times declined it and the hands of three different presidents. He had been the Democratic candidate for President in 1924, nominated on the 124 ballot in New York. He was not young in 1952 and 53 when he argued Brown v. The board of Education He had been Woodrow Wilson’s Solicitor General and a Congressman from West Virginia. He opened his argument to the court saying, “ May it please the court, if the Court should find for the Negro children here, then I am unable to see how the schools of the states could anymore segregate on the basis of sex, or age, or mental deficiency. He was a person of his time, the time of the historic misunderstandings and oppression that gave rise to these statutes. He came to maturity and was in public life at that time. And so he thought, in Brown itself, to reach to mental deficiency, his prediction was right. He lost the case, but won the prediction. He lost Brown but he won our case.

Chapter 6: Media and Reaching Diverse Audiences 17:50:47:22 – LS: When you were preparing your case you had essentially many different audiences you would be presenting this information to. Certainly the judges, but there was a lot of public attention, there would be a lot of media attention around the PARC case. Did knowing that you had to send a message to many and diverse audiences at all effect the way you prepared evidence in this case?

17:52:00:18 – 18:01:28:03 TG: Yes, having in mind the many audiences that the Pennsylvania Association hoped to reach through this case very much framed the way in which we prepared the evidence. It, it, it, the history’s was very important. It’s become usual now to assume that history has a place in Constitutional litigation – it was less usual then. But the resonance of the history to uncovering, exposing, and overcoming stereotypes is obvious. And since overcoming stereotypes was what we wanted to be sure happened in the courtroom to the extent that it was present there, and courtrooms are designed to overcome stereotypes, that’s an institution that does it, the rest of our public forums don’t do it so well. But we wanted to overcome it as well amongst the wider public – publics- of the case. People at large, citizens, school districts the people who worked in school districts, teachers, families of people with retardation. We wanted them to be as deeply informed as was necessary for them to feel and be free to act. We wanted the legislators to be informed; we wanted them to understand that it wasn’t that their historic counterparts were bad people, though some of them may have been, but that they were very, very, very ignorant, and once one had an appreciation of fact and history, legislators can act differently. So yes, that we very important, and we chose our witnesses, the line of examination with all of those things in mind. Gunnar, as it turned out, Gunnar was going to be our closing witness. We submitted a witness list of eight, maybe ten witnesses. We got to four when the Deputy Attorney General for the Commonwealth of Pennsylvania who was trying the case for all of the defendants stood up and said, “Your Honor, we would like to take a recess if we may, so that the Commonwealth can consider whether it can compose this case with the Plaintiffs. Um, uh, so we only got to four witnesses. The first witness was Ignacy Goldberg, who was a professor of education at the Columbia Teacher’s College. He had been a travelling salesman for the American Legion in the early 1950’s, going from state legislator to state legislator, seeking to persuade them to, to bring them to creating what came to be called ‘trainable’ classes for the mentally retarded, the ‘trainable’ mentally retarded, a category that correlates with moderate retardation, more or less. Why was the American Legion into that? Well, the military families had the usual distribution of disabled children and the military needed to be attentive to all military families, and so they took it as their job, the American Legion did, to persuade the state legislators to begin to admit children with disabilities. Interestingly enough, some of the most well developed, state-of-the-art uh, practices in educating people with mental retardation and disabilities more generally were in the Department of Defense schools. They ran the schools in Germany and Japan and other places in the ‘40s and ‘50’s and ‘60s, as unfortunately still now we have so many families living. Now let me (laughs), how did I get into all that? What were we doing? We were doing the witnesses, Ignacy Goldberg, uh, he, he treated of the history that we have talked about. Uh the next two witnesses were (laughs), were people that Gunnar used to call the young men. Uh, the first was Jim Gallagher, and the second was Donald Stedman – they were the second and third witnesses. Jim had been an Assistant Commissioner of the United States for Education at the United States Department of Health, Education and Welfare, in the 1960’s. He was the Assistant Commissioner in charge of education for children with disabilities. And he, as Ignacy had, went – Ignancy went deeply to the history, and Jim went to its continued virulence. Jim went, as Ignacy had also, to the states of the art and the undertakings that made clear the fact that, uh, all children with retardation could learn significant things, and learn them in ways that, that were related to the way that ordinary children learned and ordinary teachers taught ordinary children and so on. That there was knowledge that children with retardation had great capabilities and that there was knowledge of how teachers could loose these capabilities. (Laughs) Just saying that reminds me of the prevailing theory of the mind in those days. Plato’s view which was common in American philosophy as taught in colleges, universities and once upon a time in high schools, they actually taught philosophy was that all people are born with all knowledge, and the job of education, the job of the teacher is to frame the question that brings it from the back of the mind to the front of the mind. Isn’t that a lovely simile, a lovely way to think of education? Well, Jim and Don and the last witness uh, uh, Jima and Don were at the University of North Carolina, Don later became Provost of Duke University, um and they were masters of the states of the art, that was their emphasis in making the record, how it could and would be done. And the last witness uh, a wonderful man who wrote Christmas in Purgatory um, he was at Syracuse University and was Dean of its education College and he addressed the states of the arts as well, but he also addressed a kind of underlying point, namely, the changeability of intelligence. How any given person’s intelligence is not set for life, it was an insight that had been around for a long time among serious educators. Those were the four witnesses who made it, and there were a wonderful set of additional witnesses who did not make it quite.

Chapter 7: Fundamental Shift for the Educational System 18:01:28:16 – 18:04:04:19 LS: It seems that what you were presenting with this case, for the courts, for the education system was really fundamental shift in thinking about how all children were educated.

TG: Sure.

LS: Do children respond to the standards of the school, or do schools respond to the needs of the child?

TG: That’s, that’s very perceptive and very early, all of the people in this case, um, the leadership of the ARC and all of the rest of us became aware that what would improve schooling indeed make it possible for children with disabilities would improve schooling or everybody. And, and very much later, a very important leader in the movement of people with physical disabilities, Sharon Mistler of Oklahoma and then of Washington DC, a central figure in Section 50 of the Rehabilitation Act and a central figure in the enactment of the American with Disabilities Act. She had been at the University of Illinois, at Champaign Urbana and she told the story about the masters’ thesis written in the 1950’s following the University of Illinois’ installation of curb cuts on the campus at Champaign Urbana, and the writer of the master’s thesis had interviewed all of the constituencies at the university asking why they thought there were now curb cuts at every corner. And the young faculty said “so we can ride our bicycles more easily”, and the young faculty wives, marks it as the ‘50s, “so we can more easily push our baby carriages”, and the groundskeeper, “so that we can more easily move our heavy equipment around campus”, and the jocks, “ so that we can more easily do our miles of jogging”, and so on. In other words, what improves the world for people with disabilities improves it for everyone. And indeed so many of the important insights of the states of the art in the education effective education of children with disability have done so much for the education of other children.

18:04:04:23 – 18:05:51:16 LS: The principle issue that you put to the court dealt with the equality of access to education rather than the quality of access to education?

TG: No, no, no no, no , and yeah that’s, you don’t really…It isn’t enough to persuade the court that there’s something unequal going on here, there’s something that offends the equality provisions in the Constitution and the equality commitment of the United States. You really have to, as you have to do in real life outside the courts, you really have to persuade the court that you can do it, that it can be done. Because what we were after was really effective teaching and learning. We weren’t only after having the children in the schools. There were times when we said, Gee, even if it were only an equal right to babysitting, when kids are their, their active thirteen and fourteen year old for some hours of the day to relieve parents, it would have been a case worth bringing. But what we were after was serious focus upon the capabilities of these children by the schools. And so we had to make the record that they could learn, and here’s how, here are some ideas, not full but some good idea of what will be necessary for it to happen.

18:05:52:16 – 18:08:37:27 LS: How long did you expect this hearing to be and ultimately, how long did it end up being?

TG: (Laughs) Well it ended up being one day, the four witnesses were done in one day. Uh, um we expected, we had the ten witnesses all set to come, four of them the next day, and another couple the next day and so on, and it was a considerable surprise when the Deputy Attorney General said maybe, maybe w can do this. And so we adjourned for, let’s see, from – the hearing was in August, we had the courts first set of orders were on October the 8th. So we adjourned until sometime in late September and during that time we worked through what the orders would say. On what terms we would settle this court- this case- and what the Court would order the Commonwealth and all of the school districts to do. Um, and then, as I mentioned, the members of all classes, plaintiffs and defendants were entitled under the rules of the class action rules of the Federal Courts to notice, and the opportunity to be heard. And that notice was given to all school districts directly, and by the Commonwealth and the school districts to many parents, this is short of the notice to parent after the final orders, and so there were a couple of days of hearings in, maybe three, in February, and then the final decision and orders of the Court came in early June of 1972. Um, um, several school districts put on witnesses and we had the opportunity to cross examine them. A couple of parents came in because they were not satisfied with one or another provision in the preliminary orders. And, indeed, they had significant things to contribute which improved the orders in their final version.

18:08:44:00 – 18:08:58:19 Crew chatter

Chapter 8: Meaningful Provisions in Consent Decree 18:08:59:07 – LS: We’ll start again by talking about the Consent Decree, I’m wondering what you think some of the more meaningful, or most meaningful provisions are in the consent decree?

TG: Well, the most important words, of course are at the start. It is the injunction to the school districts, uh, to provide a free, to provide access to a free education appropriate to the capabilities of each child, to every child with retardation – those days we just said retarded child., in Pennsylvania. Those provisions were tracked, as were most of the provisions of the order directly into public law 94142 the Education for All Handicapped Children Act of 1975, now know as IDEA. Um, the second provision was very important, was the statement in the orders of a preference for educating uh, retarded children with children who were not retarded. And it was, it was stated in terms of there’s a preference for the placement of the child in regular education over special education and in regular education or even special education over institutional education or what have you. And that gave rise to what is miscalled in the popular parlance, unfortunately, the least restrictive alternative requirement of 94142 the Education for All Handicapped Children Act. In fact, what that provision says in the Act and the language of the orders in the PARC case were suggestive of it was that children with disabilities shall be educated to the maximum extent appropriate with children who are not disabled. And if you pause for a minute and try to get the single phrase that would sum that up it would be integration! Not least restrictive environment. Least restrictive environment came from that run of cases that was about improving the institution and it came from a longer tradition of free speech cases where when you were doing anything that touched on free speech, you had to choose the way of doing it that was least restrictive of free speech. It was not from the quality side of the Constitution, but from the due process side of the Constitution. And in my experience and observation, has caused an enormous lot of trouble, that phrase, because everybody and the school districts like to play games with this as long as they can, least restrictive of what? And we each of different things and the time spent in, anyway, but everybody knows what integration is. Anyway, that was the second most important provision and the third, third most important third and fourth most important were those where the orders required that families and children should be given the opportunity to be heard if they were not satisfied with the nature and the quality of the education, the content of the education and the means of the education which the school district was providing. Uh, that’s been very important. And the fourth was a provision for the Commonwealth plan for the education and training, and the commonwealth plan for the location, identification and enrollment of all children and those plans which became Orders of the Court and ultimately included the requirement of consultation be the Department in putting those plans together, this was in the Court’s orders, and the a consultation be the school districts at the local level with task forces of families and people with disability. Um, and that, thereby, in addition to the due process forums we had the consultation forums which have been used by generations of parents since, um, to drive home their rights and make them real and to give them the content necessary to bring them to life in any particular child’s experience. 18:14:40:12

18:14:40:15 – 18:16:48:23 LS: Tom, as we had discussed earlier, many of the parents involved with PARC were worried about suing the Commonwealth. I was wondering what the Commonwealth’s response was to the Consent Decree?

TG: Uh, they, the Commonwealth embraced it, um, warmly. Um , it was common in those days in state departments of state bureaucracies, I use that word bureaucracy as a word of celebration and approval as it was when Faber first used it. And the genius of a bureaucracy was that it was designed to focus on the purpose of the law and never to vary, to keep one’s eye always on the purpose and in whatever different circumstances arise to pursue it. Well, it used to be very common for state departments to be manned by people who believed in the purposes of the Department, both the education departments and the public welfare departments. Indeed, in the days since the Civil Rights Movement, and the Disability Movement, and the Women’s Movement, some people have chosen to become lawyers because of the opportunity it represents, to do things that are good for and with people. IN the old days people. In the ‘40’s for example, and the ‘50’s, people would go into state bureaucracies to pursue those purposes. And so both ion the Department of Public Welfare, which had responsibility for such education as went on in institutions, and in the Department of Ed- later was all given to the Department of Education so that it would be run generically, And in the Department of Education there were people who were in the same mind as the Plaintiffs, and who were delighted to do it.

18:16:49:00 – 18:17:36:11 LS: Was there a Right to Education Office established at this time?

TG: Yes, Yes, it was established under the Decree. There were two Masters appointed as well. One was Dennis Haggerty, of PARC fame, and the other was Professor Goldstein [Herbert Goldstein, EdD], from Yeshiva University in New York. Um, and the state task force met regularly with the leadership of the Department of Education on the Right to Education and the Right to Education Office carried the particular responsibility for all of the state officials who had been defendants to implement it.

Chapter 9: Implementation of Consent Decree 18:17:36: 13 – 18:24:10:10 LS: The implementation of this was staggering. You had initially mapped out about a year to both find children who needed to be served of which there were literally thousands, perhaps 11,000 between the community and institutional settings who were being underserved, I believe that effort was called COMPIL…

TG: Yes. Commonwealth plan to identify, locate, and evaluate, thank you.

LS: that was followed by COMPET…

TG: Yes, the Commonwealth plan for the education and training of .

LS: Why did the implementation have to happen so quickly?

TG: Well, this was enormous institutional change. Uh, small ‘I’, institutional change, uh, in the schools, and in the expectations of all of the actors in schools, uh, and it needed to be done with care. As Thurgood Marshall said at the close of his historical analysis in the City of Cliburn Texas v. the Cliburn Texas Living Center, “Prejudice once let loose is not easily cabined”. And the job of overcoming the oppression which these laws had imposed at the start of the century required a careful and thoughtful attention at every step of the way. To bring people in, to help them see what could be done, and how it could effectively be done, and, and yes, so it was done, and it took the investment of very many people across the Commonwealth, in the schools, and outside of the schools. Marlene Burdaugh wrote that little yellow book that you alluded to earlier which was the handbook for PARC shared with all the school districts, telling them what was going on and how to proceed to identify, locate and evaluate. I lost the bet of an ice cream soda with the director of the education of disabled kids in Pittsburgh. A wonderful woman who said, “I understand, Tom, why you asked the Court to take three diverse school, districts and require that they go door-to-door, so that we could compare what they found with what the other methods of locating children would produce but”, she said, “I know, I know who and where each child with a disability is in Pittsburgh..” And, and so we bet and ice cream soda and so she went door-to-door anyway, and it turned out that the numbers (claps) were perfectly matched. In the other two school districts we found some more, and across the Commonwealth of course we found tens of thousands, hundreds of thousands of children, and across the country, now, the numbers are very large indeed as it continues. Part of implementation, it’s worth mentioning, because it’s a testimony to the dimensions of the Movement, very – two things – I’ll do them backwards in time. Very early on, after the October orders, the preliminary orders, the leadership of the United States Department of Health, Education and Welfare and in particular the Commissioner of Education and his assistant Deputy and his assistant Commissioner of Education for Disability Education understood that this was going to require enormous careful and well informed change in the schools. And they realized that most teachers, but for families, had not been schooled, had not been trained to teach children with disabilities. They also realized that there were a whole lot of departments of education in universities around the country who had been developing the state of the art and who with the organizations in the Movement, the ARCs or the UCPs or the Easter Seals, or what have you had been trying out stuff and keeping track of what worked and so on. And so Ed Martin, whose the guy at the ATW in charge called several people at the universities [ Nora Serian ] at the university of Washington and Lou Brown at the University of Wisconsin and uh another at the University of Kansas and another at the University of Richmond, Commonwealth etc., and said, “hey, can’t you help?” to prepare and support teacher in doing this. And so they founded an organization initially called by the wonderful Old Testament acronym of ASEPH, the American Association for the Education and Training of the severely and profoundly handicapped, later re-baptized as TASH. Which became and had become one of the most influential, powerful indeed, organizations in the Disability Movement. Originally it was all professionals. Teachers learning, and teachers from the university campuses by and large, teaching. And then family members came in, and then as the Movement of disabled people broke out in the mid ‘70’s, people with disabilities themselves. The implementation was a movement itself.

18:24:11:12 – 18:27:04:26 TG: It helped that the PARC case was followed by another 37cases around the country. The first one after PARC was in the District of Colombia, the next one after PARC and DC was in New Orleans. There was one loss, I think, in a state court in Ohio. But all of those cases by and large in Federal Courts, overwhelmingly in Federal Courts, won, to the same effect. And the other story I was going to tell you along with calling into being the TASH organization, the day after the preliminary orders on October 8 of 1971, were entered by the Court, the New York Times carried a front page report, uh, of those orders of the case and of the opening of schools to retarded children. Philadelphia had a very active New York Times Bureau and he had followed the case. Ten days after that front page story, there appeared an editorial which said the United state Congress take note. Why don’t you require what has happened in Philadelphia at the hands of a three-judge Federal court of all of the states? That editorial happened because Jim Wilson, the President of Pennsylvania Association for Retarded [children] Citizens commuted every day from Philadelphia to New York where he was an important figure on the business staff, the commercial side of the New York Times and the editor of the editorial page was a person with whom he occasionally had lunch or drinks. And he, and the front page brought it to his attention and within three months of those preliminary orders in both houses of the United States Congress members of both parties acting together had introduced legislation that ultimately became Section 504 of the rehabilitation Act and the Education for All Handicapped Children’s Act.

18:27:05:20 – 18:29:37:10 LS: Tom was there anything in the PARC case that you had hoped to accomplish but did not?

TG: No, but saying that, one has to say that prejudice once let loose is not easily cabined, as Thurgood Marshall said. And as any family member who may chance to see or hear our conversation here today and every person with disability who has worked their way through the schools knows, prejudice once let loose is not easily cabined. It is a battle, from day to day, from season to season, from year to year. Happily, it is a battle that has some shape because of the cases and the statute that has explicit purposes and values which the schools are required to meet. So all of us now engaged in these battles child by child to bring it all to life, have some things that we can use. And we have a wide network of people in the Movement who had been through it themselves, and are going through it now and they help each other and all the rest. There is in the presence of historic discrimination no silver bullet. There is the emphasis to be placed upon the values of equality and the facts which make equality possible. There is enormous comfort and support as we try to make it real, child by child. And we have the framework in which to conduct those battles. But understand – it is a battle – always. It takes a serious, informed human investment and it takes some company and support to make it happen for each child in each classroom.

Chapter 10: Impact of Right to Education Case on Tom’s Career 18:30:06:00 – 18:44:12:27 LS: Tom, how did the work on this case shape you own career path? This was your first disability case..

TG: Ah, well, I um, that’s interesting. I had, uh, I had, uh, taken leave from the Philadelphia Law firm where I began to practice, and had returned there, and it was there that PARC found me. I had been in the first generation of legal services lawyers in the time in between. I did this case from the place that was the beginnings of the Lawyers Committee for Civil Rights under Law. It was in the attic of a thirteen storey building at the corner of Market and Thirteenth Street in Philadelphia. And I for the forty years thereafter until I retired, I devoted a great deal of my professional work to disability. And did so in the public interest world essentially at the Public Interest Law Center of Philadelphia. Um, and so this experience was multiplied across the uh intentions that PARC had had at the very beginning, to turn institutions into rubble and build community services instead, it was, turned into what was the longest running battle in the practice of disability rights law that followed at the Public Interest law Center of Philadelphia uh, that many of my colleagues and a great many clients across the Disability Movement virtually every disability organization were involved in – it was called the transbus battle. I was the effort to replace the steep stepped difficult to use for people, impossible to use for people with disabilities, disability, difficult to use for people without disability, buses of the ‘70s. And it took until about 2005 to win that battle, the longest lived and a tribute to – one of the rules of the Disability Movement as of all of the equality movements that preceded it uh, is, uh, never take no for an answer, and the counterpart rule is if you first do not succeed, try another way. In the transbus battle, the battle for a bus that had a low floor and no steps, a battle on which there was great federal leverage because the federal government put up the development money, the design money for buses and under the Urban Mass Transportation Act of the United States paid for a significant part of all the buses that were built. And so we had early successes in the late ‘70s driven by section 504 in getting the Department of Transportation to require that all buses be accessible to the disabled, and to suggest almost require that they be made accessible by being low floor buses that had flip ramps and were easy – that fell apart when General Motors decided they would not manufacture any more buses for New York City and the contract went to AM General, and they were so busy for ten years that they didn’t want to make a low floor bus, and General Motors didn’t want to make the low floor bus, and, and so instead we spent several decades with those lifts on the backs of buses that nobody can use very well. It’s hard for elders to stand on them and be lifted trough the air and so on. But in communities all over the country, the Disability Movement and its expressive organizations stayed after local transportation authorities and state transportation authorities until by 2005 we had three or four years of experience of someone having been brought into the manufacturing field who was actually making a low floor, no-step bus and by 2005, almost most of the buses on the streets of cities and such rural areas as had buses, were low floor, ramped,no-step buses, welcoming to people in wheelchairs to people with Canadian crutches, to elders who were a little unsteady, might not have a cane, useful for mothers with children, etc., etc., etc. Uh, Sharon Missler was one of the leaders o that battle, Paralyzed Veterans of American was one of the organizations and, and it was one of those occasions after the disability organizations of every stripe had gathered together to require [ATW ] to issue regulations under Section 504 of the Rehabilitation Act of the legislation of 1973 which, uh adopted the first Civil Rights Act, the very words of Title 6 of the Civil Rights Act, the ‘race’, the very words of Title 9, ‘women’, adopted and applied to people with disability. Well it took sit ins in Joe [Calafata’s] office, Secretary of ATW and they were les initially by the American Coalition of Citizens with Disability and Paralyzed Veterans of America and ADAPT, which is kind of the SNC of the Disability Movement now still very effective but in time over the months that it took to bring Joe and the carter Administration to issue those regulations under 504, people with disabilities and their families and their friends of every stripe gathered in the battle and you began to see all around the United States people of differing disabilities talking with each other and supporting each other and doing things together and the ACCD was one of the first cross-disability organizations – now there are many. TASH is one, the American Association of People with Disabilities is another, and of course that has multiplied the influence, the strength, the power of people with disabilities enormously. Because we are um, a good one out of every ten people has the experience of significant disability and when you count their extended families, of course, who have the experience of disability in a different way but who know it very well and, and who want the world to welcome and cherish people with disability- that is potentially a very strong movement that we call the Disability Movement. Which is not to say that there are not problems. There have come in recent years to be very significant problems some of those, most of those, have to do with how the services and supports for people with disabilities and their families are funded, and whether their funding will be sustained. We are now in late 2011 and it will extend clearly into 2012 and almost surely beyond, in political crisis around the continued existence of medical assistance Title 19 of the Social Security Act of the United States. And Title 19, Medical Assistance, though widely unknown as the predominant funding of services to people with disabilities and their families, ‘cause the states by and large don’t call it Medical Assistance, don’t tell us that anywhere from 50% – 70% of the funding comes from the Federal Treasury – it varies state by state by the rate of poverty. So many people who have noticed the drawing back on disability support and service state by state over the last several months maybe even couple of years – not everyone recognizes that that’s all about Medical Assistance. And once they recognize it, however, and see that Medical Assistance is at the center of the national political agenda then the great reach of The Movement can be activated.

LS: Are people vigilant enough, Tom? TG: Not nearly, not nearly, and there are terrible traps. The largest one, the largest trap for the Disability Movement, for any movement, for anyone with a need and a deep wish to see the equality commitments of the United States recognized and more fully realized - it is, its summed up in a phrase its one of two phrases, “that’s the best we can do”, or “it made no sense to try because we wouldn’t have gotten anything”. The Governors of the United States who since 1965 have been very vigilant to maintain Medical Assistance and to keep it well funded in this last Congressional season did not act to maintain a step up in Federal funding of some fourteen percentage points for every state which expired on June 30th of 2011, and the leader of the Democratic Governors, the Republican Governors wanted it to lapse, leader of the Democratic Governors was quoted in the popular press as saying ‘we wanted, of course, to see those fourteen additional percentage points extended, but we didn’t think we could get it’. Which is a lot like what happened in the disability organizations in 1997 when the House of Representatives passed a reauthorization of the Education for All Handicapped Children Act , IDEA, which removed the ‘all’ and reauthorized for the first time since 1975 the removal of children by school districts from school. The reason why that was allowed to happen and is as the disability organizations inside the beltway said, ‘that was the best we could get’. Well, parents across the country found it unacceptable, and they revolted, all across the country.