Dr. William Bronston’s Willowbrook Memorial Lecture, presented on April 30, 2019 (Unabridged)
On April 30, 2019, Dr. William Bronston delivered a Willowbrook Memorial Lecture at City University New York. Fifty years later, as Dr. Bronston stated, “The only way we’re going to transform the Willowbrooks of society is through law and a new democracy that we have to generate.”
Chris Hale: Hello. Welcome to the 28th Annual Memorial Willowbrook Lecture. Can everyone hear me? Mm-hmm. Yes? Hello, my name is Chris Hale. I'm a professor of special education at the school of education here at CSI. I've attended these lectures for ten years, and during which I've put together my own ideas of what happened here. And this year I'm honored and very pleased to have participated in organizing the event and introduce… Our speaker and a few guests here. Before I introduce our speaker, I would like to acknowledge a few special guests, a few other special guests who are attending. As I introduce you, please stand or raise your hand. First, Dr. Michael Wilkins.
Chris Hale: Dr. Wilkins was our speaker last year, and he's a physician, like Dr. Bronston, our speaker this year, who has been a strong human rights activist in many venues, including Willowbrook. It was his key that opened the door to Willowbrook to Geraldo Rivera after he was terminated due to his activism at the institution. Next, Diana and Malachy McCourt.
Chris Hale: They were the original plaintiffs in the consent judgment. Their daughter was named in the original court case. They are highly engaged activists, advocates for deinstitutionalization in Willowbrook and elsewhere. And Willie Mae Goodman. [inaudible]
Chris Hale: [indistinct speech] She was also one of the original plaintiffs for the consent judgment. She is here with her daughter Margaret, who lived at Gouverneur. Is that how you pronounce it, "Gouverneur"? Gouverneur. Well, nice, thank you. I have to read this, and I don't have the eyes. Gouverneur, a facility in Manhattan for individuals, mostly children, with developmental disabilities. Mrs. Goodman was an activist who worked to prevent the dangerous transfer of children at Gouverneur to the understaffed and overcrowded Willowbrook. Next, Bernard Carabello.?
Chris Hale: He was a participant last year at this lecture. He is a powerful self advocate who has served in the New York State Office for People with Developmental Disabilities. His progression from resident of Willowbrook to a well-respected post in government is an incredible example of the potential of people with disabilities. Also, Diane Buglioni…
Chris Hale: Worked at Willowbrook State School and is presently deputy director of a Very Special Place. Finally, Tim Casey.
Chris Hale: Stand up for a minute. Stand up. He was Bernard's original social worker, which is going to go on my gravestone. On his gravestone. He participated in Willowbrook closure activism and went on to become an attorney, a welfare rights, yes. Welfare rights attorney. But there are no more welfare rights. Right. So you gave that up. So would anyone who lived at Willowbrook, who had family there, or who worked there please stand or raise your hand, who I didn't mention? Wow. Great. Thank you. Sorry I couldn't mention everyone.
Chris Hale: Today it's my pleasure and honor to introduce, to present our speaker this year, Dr. William Bronston. Dr. Bronston was a staff physician at Willowbrook State School in the late 1960s and early 1970s. When he arrived at Willowbrook, he brought with him a history of activism and community organizing on multiple fronts, including civil rights, the anti-war movement, and health care reform.
Chris Hale: At Willowbrook, Dr. Bronston, having recognized the corruption, cruelty, and dysfunction of the facility, set himself to organizing a resistance composed of mostly parents and workers. Ultimately, his efforts, along with those of his confederate, Dr. Michael Wilkins, were central to exposing and closing Willowbrook. Dr. Bronston went on to become a central organizer of lawyers, parent leaders, and educators in the development of the federal class action lawsuit against the state of New York, which eventually resulted in the consent decree that closed Willowbrook and set the stage for a national deinstitutionalization movement and the establishment of systems of community-based care for people with developmental disabilities.
Chris Hale: Finally, Dr. Bronston is the co-author of the book "A History and Sociology of Willowbrook State School," also written by two of our faculty here, and is presently in the process of writing a book on Willowbrook and health care reform provisionally entitled, "Public Hostage, Public Ransom: Ending Institutional America." Great. Please welcome Dr. William Bronston.
William Bronston: I hope… first of all, thank you for coming. Thank you for coming. I hope that nobody leaves here the way they came. I want to make sure that if somehow this is a successful two hours, then you will be changed somehow in terms of your personal sense of engagement and dedication to justice and the transformation that is going to impact all of us in the next ten years. I wanted you to see the 50-year-old slideshow to just show you that there is no such thing as mental retardation. There is just inhumane crimes against humanity that crush people. People were crushed by their environment, and the people worked there were crushed by the environment, and the people who ran the state made money from crushing people and commodifying them and concentrating them and then billing Medicaid to fund the crimes, and they have never yet publicly apologized or in any way taken responsibility for this incredible concentration camp system in America that preceded the series of 37 state federal class action lawsuits that grew out of the work of parent advocacy, lawyer advocacy, you know, pro--wonderful progressive educators and so forth.
William Bronston: Willowbrook as it was doesn't exist anymore, but all of us in this room, all of us in this room are headed to our own Willowbrook in the terminus of our lives because the Social Security Act has in it Title 19 that created Medicaid funding for out-of-home placement for anybody who had a dependent member of their family. That means that by law, a decision, a policy decision was made by men to establish a domestic refugee population in America which surrounds us today, all around us. Our elders, parents, grandparents that are part of our family are, unless the state has a waiver program, which there are not many, are stuck in segregated, congregated warehouse systems. No matter how good they may be from here to there, they are fundamentally anti-family and antisocial, just like this monstrosity was.
William Bronston: All that Willowbrook was was a big cancer of what all of us are going to experience in our lifetimes and our families' lifetimes because of man-made law and man-made policy, and that policy must be changed. I think that, it was interesting listening to Chris talk about how even Bernard could demonstrate what a person with a disability could become. We're in a institution of higher learning that's committed to make sure that everybody can become a Bernard in society and that Bernard is no different from anybody else except that he's different, like everybody else.
William Bronston: Our whole language is shot through with ancient stereotypes that are totally stigmatizing, that diminish and dehumanize people, where expectations and image rule the day. The reason that could happen was that when people walked in there, they believed that the Bernards laying on the floor were there because of some intrinsic problem in the individual. They didn't see that it was the steel doors, the terrazzo floors, the lack of staff, the lack of money, the lack of any kind of enlightened administration from the operation of the institution all the way to the governor's office was totally responsible for the image of their acceptance of this kind of dehumanizing cruelty that's imposed upon people, and it's in a continuum.
William Bronston: It's in a continuum. Everybody in this room knows that at some level, some family member is undergoing some kind of humiliating, insulting, dehumanizing experience that's thought to be okay because of our language and because of the way in which we look at the world and the way in which we accept and embrace doctors, medicine, health, medical system delivery. I'm gonna take you to a solution before I finish. But I want you to kind of sit with, for a minute or two, the implications of why people went there to work, dealt with the situation they dealt with, and were terrified of speaking out and became part of the problem because Willowbrook was a multi-million-dollar commodity center.
William Bronston: In flowed drugs; in flowed soap; in flowed towels, blankets, sheets; in flowed food; in flowed every conceivable kind of support matter to keep folks in the place. Every person that was in the place was drawing Medicaid money. And the reality of the situation was that when the governor decided to build the Albany Palace, the marble and gold palace, he cut the budget and created a budget freeze so he could squeeze the money out to make his monument, Nelson Rockefeller. The whole institutional system in New York, the [inaudible] university system, the community mental health system, the housing system was all created in Albany with a billion-dollar front-end commitment of dollars that Nelson extracted from the legislature to slowly but surely sell bonds using his brother's bank, David's Chase Manhattan Bank and Goldman Sachs to move tax-exempt bonds to the general public to fund all the buildings, all the public buildings in New York state.
William Bronston: And many of the buildings that were the deviant buildings like Brooklyn and Broome and so on and so forth, were devalued people were put out in the middle of nowhere, which was able to generate industry in very rural parts of the state to link people to the Republican Party. And the lawyers and the builders and the contractors that created this place had no idea in the world how the hell they were gonna staff them or what they were going to do in terms of using them properly.
William Bronston: They just labeled them as a state school for mental retardation, and out it went, and so it didn't matter whether there was nobody working in these places. They filled them up with people. They filled them with the unwanted because New York state had zero dollars in community-based services in the state, zero community services. There was no group home in the state of New York while they were still building these institutions, until the lawsuit happened. There was no alternative. Parents either had to keep their kid at home at enormous cost at all levels; emotional, physical, financial, family, or they had to give them up to these concentration camps, and they were incentivized to do that. And the state not having an alternative for people that had problems and the school system who excluded any kid that was different, that didn't fit the school wound up somewhere else except where they belonged as a growing child. So somehow or another, we are still grappling with, every day, today, the same problems that we were grappling with then, and that is that we have a whole population of very different people that stress the state, that stress the community, that create challenges because they're remarkably different.
William Bronston: And the consequence is that the society is brutalized by the public policies created by white, old men dominate our society. Excuse the identification, but what can I tell you? Some of us partly escape. I think that, like the African-American community, the community of people that have been institutionalized deserve reparations because their lives have been destroyed. They have been withdrawn from the economy, withdrawn from society, withdrawn from community, withdrawn from love, withdrawn from family at a impossible cost, and what's interesting is that when you have a child or a relative with a really significant difference, bringing that person into life transforms society. Everybody around that index person is somehow stretched.
William Bronston: They're somehow made to understand that there's something different. Society isn't slick and luxurious and "Elle" magazine and "Vogue" magazine and "People" magazine. Society is the way we live it. We live it in this room, and the people that we know live it. It's complicated. It's not particularly happy all the time. And in urban life, there's not a lot of family connections because that's the nature of urban society compared to some of the other worlds on the planet where people are still connected to the earth. They're still growing food. They know where food comes from, you know? Their families are involved with them at all sorts of levels of production, whether it's crafts or whether it's food or whatever, you know?
William Bronston: In our society, we have a whole different situation that exists that makes holding on to each other hard. And we have no political power through the normal government apparatus. We can protest. We can have polls. But if what we want and need as a public base does not contribute to money flowing north in large amounts into the small oligarchy, we can go to hell. There has to be an understanding that the only way we're going to transform the Willowbrooks of the society is through law, through a new democracy that we have to generate. The thing that worries me is this is 50 years old.
William Bronston: I can't even believe it. I can't believe that it's been 50 years. Luann and--and Buglioni took me around the Willowbrook Mile today to show me the buildings, and it just made me so sad. We didn't look at the damn buildings. We were inside. We were where the people were. We were inside dealing with suffering that you can't imagine, trying to, Michael and I, normalize the situation and not knowing whether anybody would ever get out of there.
William Bronston: The only way people left was feet-first. I mean, literally, they were hostages. They were public hostages. They were there because the state made money by keeping them there, and the more we were able to certify that they were severely or profoundly disabled, the more money the state got. And there were 60 buildings. There were 6,000 people incarcerated here with 2,000 workers. Do the arithmetic. Three shifts a day, 60 buildings, 6,000 people.
William Bronston: So when you look at the level of human contact, nobody touched anybody. Everybody was a potential source of some kind of rare disease or hepatitis or filth that was essentially created by the place. So when you congregate and segregate people that are devalued, they become more devalued, and the whole ethos of the place, the spirit of the place becomes absolutely inhumane. It becomes a crime against humanity that has yet to be properly adjudicated. Not that the courts have not, in a very powerful way, interdicted some of this through the court orders, the "Olmstead" decision that was made that established a standard in the nation of meaningful integration into society.
William Bronston: Public Law 94-142, which was the Education for All Handicapped Children's Act, preceded "Olmstead" and set up a policy that said from now on, for a tiny group of people, people called developmentally disabled that only included five diagnoses, not every kid in America, but just this small group, had to have the school fit the kid rather than the kid fit the society, and that exclusions from public school was illegal, which put a whole lot of parent organizations out of business because they were forced, forced by the abdication of the state to provide lifetime services for their children, which essentially broke them as powerful advocates because they had to take money from the source of the evil in the first place in order to keep their kids in some kind of a program that the system essentially rejected out of hand.
William Bronston: And so the Willowbrooks grew, and Brooklyn State grew, and Gouverneur grew, and Broome State was built, and in the time that we were working over a period of three or four years, 25 new places that had a minimum of 200 beds were built before the lawsuit. And the people that ran Willowbrook had black limousines, and they were heart-wrenchingly committed to making sure that the best services were possible here at Willowbrook, which they said over and over again every time they went public. Jack Hammond, Milton Jacobs, who was his assistant, Manny Sternlicht, who was the psychologist, the nurses that ran the institution were killers.
William Bronston: They didn't really realize it, but they were killers because the death rate here was ten times the death rate of New York City, which is--ain't no, you know, cakewalk on the outside. So I can't begin to tell you, first of all, you know what awful is. I mean, we know what awful is, except that we live in awful, and we're oblivious to it because it's not called awful, and it's not exposed as often. But the institutional system in America still has a river of Title 19 Medicaid money going into it that sustains it and this gigantic, trillion-dollar-plus industry that's now controlled by fewer and fewer major monopolies, corporate oligarchs that run all the hospitals and the pharmaceutical companies and the hospice centers, so on and so forth, shrinking, shrinking, shrinking down with this gigantic flood of money.
William Bronston: And people say the system is broken. The system is not broken under any circumstances. These systems aren't broken. They just don't work for us, right? They work for somebody, and nothing happens by accident. I tell you, if you don't know now, nothing, nothing happens by accident in the political society. Everything is planned and serves somebody fabulously, and if it doesn't serve them fabulously, fixing it would be very threatening to them. And they are a small, tiny minority in America. And they don't want a government to be a government of the people, by the people, and for the people.
William Bronston: They do not want that, because if that is the case, all of a sudden their oil industry gets regulated, and they don't want their oil industry regulated, and they don't want to clean up the toxic sludge and mess that they have created at a staggering level all over the planet. And the only force that can deal with that kind of criminality is a government. And so the government has to be absolutely negated, and that has been the case since 1980.
William Bronston: There has been a consistent campaign on the part of extremely smart and extremely selfish and extremely greedy people to obliterate the significance of government and to seed government with corruption so that we see the self-fulfilling prediction that government is worthless when we see the kind of people that wind up in government, that use government for self-aggrandizement and wealth and abuse of power. But that's not all that government is. Government is sitting in this room. We are, by the Constitution of America, the meaningful government of America. And we're in a position, through our networks, through our churches, through our social organizations, through our families, through the places that we work, through our unions, and so on and so forth, to open up conversations, serious, meaningful conversations about justice, about caring, about tenderness in the world, about meaning in our lives, about safety for our families and our children, about economic development. People are talking about creating some kind of a minimum wage of $15 a couple, three years from now. $15 doesn't support anything.
William Bronston: The people who worked at Willowbrook got more than $15 an hour and they got benefits 'cause they were state workers. So it was very important to them and their unions to keep these places alive all over America. All over America there were institutions where people with "developmental disabilities," and of course, people with "mental illness," people that were too different and in which the school system, the health care, which doesn't exist 'cause you can't buy health at any price in America, you can only buy medical care in America, didn't exist to be able to handle and take care of and support families that essentially were challenged with having to figure out how to turn somebody enormously different into a contributing and vibrant citizen in the society and to bring value to everything around them through the radiation of their quality.
William Bronston: Willie's daughter is 63 years old. 63 years old. She's in this room with us. She is our sister. She is a member of our family, and her life validates our lives. A society that by any means, through family or whatever, can make sure that a young woman grows into maturity, lives, and is able to be part of the life like this brings value to all of us. How boring to just be ordinary. How boring to just be one of everybody. So people don't get that each of us is remarkably, incredibly, brilliantly different, and each one of us brings something uniquely special and profound and beautiful to everything around you.
William Bronston: Even though you may be a nag or may be angry or may feel that, you know, you're not doing it, trust me. You're doing it. Somebody loves you. Somebody loves what you stand for, who you're all about, and that has to be everybody. We have to get rid of labels. For example, long-term care, we have to get rid of long-term care and change the concept to lifetime care. Same acronym, totally different paradigm. We're talking about making sure that people with special needs, that means you and I, sooner or later you and I, are treated with absolute respect, never lose our identity, never lose our name, never get put into a stereotype group like "the elderly" or something like that or whatever, you know, old people, the aged.
William Bronston: You don't want to be labeled. Nelson Rockefeller was never considered aged, right? He had his name till the end. And so I think that we can think about, in a true health care system where health care is a right, a way of serving people from birth till terminus on an individualized basis and provide the support to make sure that families and communities can provide a normalized existence, cherish, respect, and regard, and celebrate all of us. I don't wanna go down in a nursing home. I'm 80. I don't wanna go to a nursing home. I don't wanna be put into a Willowbrook. I don't wanna see the parents who are the warriors, who moved the 6,000 people in federal court into the light, go down themselves into a nursing home just like the kids that they emancipated. I don't wanna see the kids, who are now in their 50s and 60s and 70s and 80s and 90s, you know, wind up back in incarcerated situations where they're flotsam and jetsam, they're Soylent green as far as America is concerned.
William Bronston: And that spirit, that agenda, that commitment has to come from us. You have limitless power if you think about how you wanna work your voice, how you wanna work your friends, how you wanna communicate, what you want to belong to, what you want to join, what you want to participate in. There are struggles going on out there of such consequence that they dwarf Willowbrook. Willowbrook is just a metaphor for man's inhumanity to man, but, you know, you don't have to go very far. You can go to Iraq. You can go to Afghanistan. You can go to Yemen. You can go to Syria. I mean, you can go to Venezuela, and you see mayhem, mostly white men killing other people or providing the means to kill other people. So Willowbrook is an incredible example, a model for us to take heart, really to take heart in our lives.
William Bronston: The thing that concerns me is where's the leadership? Where's the leadership? The parent organizations that existed in the '70s, '60s and '70s, that fought against the systemic abuse to them aren't there anymore, the great leaders, the great spokespeople for transformation, I don't know any. I mean, there's no really top voice to speak on our behalf, and maybe that's okay. Maybe it's not some superstar that's out there, you know, in the front that gets the responsibility of making the change 'cause the system has a way of gunning those people down. And so the leadership has to be distributed through all of us, through all of us. We have to find ways to be able to write, to create theater in our lives, to create the necessary organizations that carry out the proper conversations, to be able to look at the most important things that will transform society.
William Bronston: So today the issue isn't Willowbrook or mental retardation. The issue is universal health care. The issue is climate change. The issue is immigration. The issue is war. Nobody talks about or writes about the fact that we're spending $1 trillion a week of our money to wage war at the periphery of the empire, just like Rome, just like Rome. Rome fought in this gigantic circle a zillion miles away from the city, and nothing went into the city but the games, I'm sorry to say. The games distracted the crucial elements of society, the youth, from dealing with what was happening in the city.
William Bronston: And little by little, money turned the tide so that people could buy the empire, and things went to hell. America is fighting wars all around the perimeter of the planet and providing us with games at a very real level, and that means that we have to transform Washington. I'm not calling for revolution, although that's my schtick. What I'm saying is that the 2020 election will provide us with a step. One interesting example of that is that a woman named Priyapal Jayapal has produced a piece of legislation in the Congress.
William Bronston: She is a congresswoman from Washington state, and she has created this beautiful "health care is a right," single-payer piece of legislation which she has essentially involved in the House with about 110 co-sponsors in the House. The House has about 460 or so people, I'm not sure, a lot of folks. Of course, no Republicans are supporting her legislation.
William Bronston: Nevertheless, we've been working with her. The the Nurses' Association, the National Nurses' Union has been working with her, SEIU, AFSCME, the major unions, the major doctor organizations, my organization, the Physicians for a National Health Program have been working with her, and the bill is almost perfect. It really is amazing. And its thrust is essentially to establish a comprehensive, local, quality individualized rightful access for care--guaranteed care for every man, woman, and child in America, including people who are undocumented. If they're residents of the United States, they get the services. The entire thing would be covered by taxes. All the money that we need in the world is already in the system. We don't have to come up with a new dollar to make sure everybody's covered. And we wouldn't have zero out-of-pocket expenses. No premiums, because we would outlaw the insurance industry, outlaw the middleman across the board that's taking 30% of all of the value that should be going into health care, except there's another problem, just parenthetically, we don't have a health care system.
William Bronston: All we have is a medical wellness system. Doctors don't know what health is. People know what health is. People can tell doctors what they need to be healthy. Doctors can tell you how to get rid of your illnesses and make you well, that is, to get you to the zero point. So there have to be major conversations between educators, engineers, psychologists, social workers, community organizers, unions, church organizations to describe, to think about what's an ideal primary care system that's right by your house? Because if it's not right by your house and you have to leave your neighborhood to go somewhere else, because the system has concentrated the wealth and the hospitals in larger and larger local complexes that make it harder and harder to get to, and then they essentially waive Medicaid eligibility for some of these big hospitals.
William Bronston: My major state hospital in California, the University of California, which has hospitals all over the state, doesn't take Medicaid. How is that possible for the people's university, for the people's hospital system to not take Medicaid? The University of California, Davis doesn't take Medicaid. And they're wealthy beyond wealthy. And the people at the top are making $2 million, $3 million, $4 million, whatever it is, which is just a pittance. The pharmaceutical industry guys are making billions of dollars personally, you know, on a regular basis. So we're in a situation where, with Jayapal's bill, we have an instrument which won't work until after the election in 2020 to absolutely create a rightful system that everybody in America needs to understand.
William Bronston: Now, the relevance of that is that everything that's hurting us here, almost everything that's hurting us here would be fixed if we organized to support single-payer in America. There is a bill in New York right now. It's passed your assembly four times. It did not get through the Senate because the Senate had a Republican majority. The Republican majority is interested in making money as opposed to providing a public good. Again, everybody knows that. That's just the way it is. However, the Republican Senate majority no longer exists. You now have a Democratic majority in your Senate, and it's possible that with a Democratic majority in the House and a Democratic, in your assembly and a Democratic majority in your Senate that you may be able to pass that bill and put it on Cuomo's desk.
William Bronston: Then what's gonna happen? Cuomo says he can't pay for it. There's not enough money in New York state to pay if he doesn't get a reimbursement from the feds of Medicare and Medicaid money, CHIP money, Child Health Improvement money. Program money in order to make sure that he has a pool of dollars in order to be the single-payer for all New Yorkers. I'm sure that's not true. And I'm sure that saying that he can't pay for it isn't really the issue because I believe that the New York bill does not have a financial mechanism articulated in it. Its purpose is to establish the policy of rightful health care for everybody, and then once the people have agreed that that's what is crucial for them, then the next step will be to figure out how to pay for the damn thing.
William Bronston: Nobody asked anybody in the government, "How are we gonna pay for Iraq?" That question does never come up. It never comes up. How are we gonna pay for Afghanistan? How are we gonna pay for what's going on in Venezuela? Venez-oil-a. So the way to deal with this situation is to have the confidence in your community that the justice of universal health care, the righteousness of universal health care, the mercy and tenderness, the appropriateness, the morality of it, the ethics of it has to be held tightly and embraced. And it's a people's policy. And it will cut that Title 19 chain of money going to out-of-home placement because we have to redefine how our communities embrace and hold on to and serve our elders without people bleeding to make it happen because they have to stop work and they have to deal, you know, with problems that go up, and so they desperately need to have some help.
William Bronston: The only help they can get is paying down so that their elder can afford Medicaid to poverty level and then getting them out of the house, not because you necessarily want them out of the house, but there isn't a circle of support in the house 'cause everybody's got one or two jobs or three jobs or whatever, and the burden, the economic burden is impossible. But why are we having this economic burden? Why don't we have the resources in the society and the distribution of support services and a massive investment in the care worker community? Because right now, right now 44 million in the United States are providing unpaid care for dependent members of your family. 44 million people are taking care of people at their expense with no reimbursement.
William Bronston: You're talking about $15 an hour. That's been costed out in New York. $11 million that would be saved by having universal health care in the state of New York would immediately cover the cost of all these unpaid care workers who would be starting to get dollars because the policy would change to provide true community-based, I'm not talking about facility-based, community-based home care for people with special needs. And we are all absolutely A, sitting here now, people with special needs, and B, if you don't know it soon, you're gonna know it soon that you're gonna be a person with special needs, all of us. We have to change the language. We have to change our agenda. The question is, where is the leadership gonna come from? It haunts me. I don't know. I'm finished, you know? I got maybe another ten years, whatever it is. I'm gonna croak.
William Bronston: Where are the courageous, charismatic, articulate, genuine folks? I mean, Willie Mae is one of those people, but she's trapped, at some level, managing a delivery system, a survival delivery system for her family and her community. And it's hard for her to get on the stump to go take care of business like she did when she was a youngster and a beautiful babe that I knew 50 years ago, not that she's not a beautiful babe now, but then she was a killer even more than she is today. I mean, I direct the comment to her because she is a sister of ours. She's blood. She's blood to us. Her courage and the work that she's doing transforms our society to be a better place.
William Bronston: So where are the advocacy groups? The bureaucracy here in New York just is like a rubber band. No matter how much you stretch it, it snaps back to its original iniquity. They put a guy in charge of mental retardation. His name is Kastner. He's got this spectacular résumé. I mean, he's just done everything. He's in disabilities. He's in universities, you know? I don't get why the bureaucracy has decided to get another mental health, a medical guy to define and be the model service paradigm for our community.
William Bronston: We are not sick. Sickness is a sidecar to quality of life. Wellness doesn't give you quality of life. It just gives you the ground in order to begin to develop quality of life, right? So something's wrong in New York in terms of why the system is going right back to the way it was when we fought them and we forced the people with developmental service needs into an independent bureaucracy, the Office of Mental whatever it was, OOMD or whatever the hell. They've changed it 20 times. They keep reorganizing so that you don't know, it's a moving target. You don't know really where to shoot your arrow.
William Bronston: So it would be nice if Kastner was here. I would love to have a debate with him and discuss. I have no doubt that he's a knowledgeable and good man, no doubt about it, except he should not accept the job. He should be a consultant to an education maven because the issue here is learning how to be extraordinary in society. That's the job of the school system. Now, you can tell me the school system is in rotten shape also and that there is this absolute oppression, repression of the teaching community at all sorts of levels. It's true, but we've got a job to do. We've let it happen. It's crept up on us. It's crept up on us, and we have to begin to look at which youth that understands how to use this box is gonna call together the million people to make the move for the change?
William Bronston: The children did it around the Parkland shooting. They put a million people on the street in Washington almost overnight. Nobody over 18 said anything on that stage. Those were all children, our children. So this little girl that's being attacked because she's somewhere on the autism spectrum that organized probably another million kids all around the world to address climate change, we have to figure out how the campaign for climate change is the right place for us to be organizing around what we want to organize around here.
William Bronston: The issue here is building a mass public movement. That's the objective. How that movement essentially asserts its ethical imperative, you know, changes as the situation changes. We know that the battle for mental retardation doesn't compare to the battle to get rid of fossil fuels in our society. We know that we are on a very short cord to extension as a people in the foreseeable future if we go up 2 degrees Celsius on the planet, and we're already close to that.
William Bronston: We know. We know. The scientists know, so how is the quality of life for our community tied to the climate change struggle so that you can bring this agenda into the conversation that you have with the climate change organizers that are around you? How does this deal with the whole question of who is going to become a candidate for public office at the school level, at the city level, at the county level, at the state level, at the federal level? How do we get our children competent to use this box? For the last 20 years I've been organizing high school kids in my community, 70 high schools in eight counties to produce two major youth-driven film festivals.
William Bronston: A thousand kids come to my film festival. It's all done by kids. They jury. They make the movies. I'm talking about U.S. and Canada, and the film festival is in Sacramento. In all the time that I've had this incredible army of children come who are becoming more and more competent in telling the critical stories in society with their media chops have I seen one kid in a wheelchair. 20 years, thousands of kids in media classes in high school. No kid with a real sharp difference is among the producers of media. And we know that these tools are, for our community, very emancipatory and very empowering. So there are some things that need to be done here in terms of building a movement for change that's got to employ hundreds and thousands of kids that are competent in public media communication. It is a crucial agenda. They've gotta be able to know how to produce radio, how to produce television, how to produce Instagram, how to create Facebook, how to deal with the technology that reaches the millions, and somehow that's not happening. It's not happening right now.
William Bronston: So there are places for all of you to really see and somehow work at rethinking rather than suffering with the underdevelopment that you experience and the humiliation and the frustration and the depression that you experience from dealing with everyday life in the system that is so inured, so impersonal, so rejecting of passion, so rejecting of dreams, so rejecting of ideals, so rejecting of ethical action. Willowbrook is our proof positive. It's as low, almost, as you get in America. And being able to stand on that foundation of sacrifice and abuse, I think, provides the sense of direction, the sense of purpose, the sense of mission, the sense of vision that I'm inviting you to essentially deal with. The New York Health Act, the New York Health Act is where every single body in this room needs to go in order to read it and to understand it because it now includes comprehensive coverage for long-term care for free. Now, when I say free, that means no out-of-pocket money from us other than that we would pay taxes and that the taxes would be set up on a progressive basis so that the more you made, the more taxes you would essentially spend.
William Bronston: But when people say, "Well, this is gonna cost us, you know, $1 trillion," or whatever they come up with. In California they say, "Oh, my God, the, you know, single-payer's gonna cost $400 billion," in California. That's four times more than the whole state budget. It's bullshit. The money's already there. We're not talking about new money. We're talking about redirecting the existing money and making it work so that we have, essentially, enormous savings to begin with, A, and B, are able to then spread the savings to make sure everybody has comprehensive, rightful care where they can get anything they need from any California, New York licensed professional, I'm not saying doctor, professional. That means a massage; that means chiropractic.
William Bronston: Whatever, psychological services that are all mental health, all vision services, all hearing services, all habilitation services, all transportation services included in the rightful delivery system for the whole thing. And all it will do will be to ask you to rearrange how you're spending a small piece of your money that will have to go into a public treasury rather than into a private pocket where 30% of it gets ripped off the top. So outside there is a document that says, "Don't We All Have the Right to Health Care?" which is the health care system laid out. It says our health care system is broken. I didn't write it. The health care is rigged against working people. Now Washington makes it worse, and then they talk about freedom to choose your own provider, comprehensive coverage paid for fairly.
William Bronston: Where the savings come from they define job-friendly? By the way, if you don't have to hold on to some crummy-ass job in order to get some sliver of medical coverage, that creates a whole opportunity for a tremendous burst of entrepreneurism in the society. There are people who are doing worthless work, mind-numbing work, maybe standing outside of one of these big box stores as a security guard. I mean, give me a break. What kind of dehumanizing work do people have to tolerate rather than having the freedom to go out and do what you need to do because you don't have to depend upon that particular source in order to provide some sort of medical care for yourselves.
William Bronston: So I want you to pick this up. A group called the Consortium for Citizens with Disabilities has essentially outlined the whole set of principles for what would constitute a legitimate single-payer, long-term care system. They haven't gotten to lifetime care yet, but listen to the organizations that signed off on this. Allies for Independence, American Academy of Physical Medicine and Rehab, the American Association of Peoples with Disabilities, American Association on Health and Disabilities, American Association on Intellectual and Developmental Disabilities, the American Dance Therapy Association, the Association of People Supporting Employment First, Autism Society of America, Autistic Self-Advocacy Network, Brain Injury Association of America, Center for Public Representation, Justice in Aging, Lakeshore Foundation, Lutheran Services in America, Disability Network, National Association of State Directors of Developmental Disability Services, National Association of Councils on Developmental Disabilities, National Association of State Head Injury Administrators, National Disability Rights Network, National Health Program, National Respite Coalition, Paralyzed Veterans of America, Partnership for Inclusive Disaster Strategy, Special Needs Alliance, TASH, the Association of Persons With Severe Handicaps, the ARC of the United States, and United Spinal Association, UCP.
Woman: Where can we get that document?
William Bronston: I can give it to Chris to copy. And it comes from an organization called the Consortium for Citizens with Disabilities. Then my wonderful comrade by the name of Moss, Henry Moss has put together this spectacular plan for incorporating long-term care into the New York Health Act, which is a brilliant, brilliant, simple explanation of how it's all gonna work and how it's gonna be paid for and who's gonna benefit from it. So these two docs are pieces that I would love to be able to somehow, you know, make sure that you get. They should go, yes, ma'am?
Woman: [indistinct speech] pass around and let people take pictures.
William Bronston: Certainly. Certainly. Anything you want.
Man: Goodbye, Bill.
William Bronston: You're leaving? Take care, brother. Thank you for coming. Thank you for coming.
Man: I love Bill.
William Bronston: Thank you. Thank you, my sweet friend. Listen, I've talked long enough. There's a lot to say. There's a lot to say, but I've taken up a lot of your time, and I'd like to hear from you. I'd like to, you know, kind of make sure that you guys speak. Malachy?
Malachy McCourt: I'd like to say thank you very much, Bill.
William Bronston: There's a mic there.
Malachy McCourt: My name is Malachy McCourt, and we have been friends for a good number of years.
William Bronston: Hello? Hello?
Malachy McCourt: I appreciate your coming here and keeping the fires lit. I'm 87, so I'm in what they call the departure lounge. And the fire but we need--we need, as you said, new leaders and voices of fire and of passion.
William Bronston: Yes.
Malachy McCourt: And this is the only, as far as I know, this is the only college built on a concentration camp. Belsen and Auschwitz are just monuments. But this college is built in a place that you showed in those pictures here today, and I think that within this college today and looking at the young people that are here, I think and I hope that you have inspired some of the young folks here that are listening to you today, young women, young men who will decide that they will not have one of those shitty jobs in a box for a century because they can't afford medical care, but they will be able to rise to a principle, to humanity, to compassion, to love so that they will get on the job of, it's perfectly all right. If you take the job, I will follow you in my wheelchair or whatever, and we all will, no matter what age we are, so I will say to young people here, there's nothing you can't do in this country, and one of these things you can do is you can go for the goal of decency, humanity, generosity, and what I call real patriotism, which is looking after us who need your care.
William Bronston: Thanks, man.
William Bronston: Mark? Let me just say one quick thing. There's another flyer out there that is the flyer for David Goode's magnificent book called "The History and Sociology of Willowbrook State School." It's a must-read. It's the best book that's been written about the inside and the outside of Willowbrook that I've seen published yet. Yes, Mark, go ahead, please.
Mark: Bill, the last number I heard is 140 million people get their health care through work.
William Bronston: Say it again?
Mark: 140 million people get their health care through work.
William Bronston: Yes.
Mark: Their employer. I never quite figured out…
William Bronston: They get health coverage. They don't get health care.
Mark: So I never quite figured out why large corporations who compete with international corporations in Europe who don't provide health coverage to their employees, why aren't they out in front with a Medicare for All system?
William Bronston: Okay. Did everybody get the question? So look here. Here's what I've learned. When you see something that doesn't make sense, it's because you don't think about it in a sensical way. If something is happening, it was done that way to benefit somebody. So if Ford or General Motors, who could save 20% on every car they make on the U.S. side of the American-Canadian border don't support single-payer health care, you've gotta ask yourself why.
William Bronston: What's the payoff for them? It may not just be dollars. It may also be because there are key people on the Ford board and on the GM board that are also on the Pfizer board or on the Aetna board, so that there are these interlocking board situations and there's a certain solidarity among the oligarchy that they don't wanna screw each other. And they know that if we had universal, comprehensive care that freed them of that 20% that makes them uncompetitive at a certain level, that there would be a consequence to them. Well, what is that consequence? What would make it worse for them to not have to lose that 20%? And you gotta think that way.
William Bronston: There is a reason why they don't want this to work, because if it works, we, the people will be empowered, and our democracy will fundamentally be reestablished in America because the process of redistributing these gigantic hospital complexes that have been concentrated to provide local comprehensivity at the most local level in all of society, rural farm areas, cities, poor areas, whatever, requires a public utility decision-making process from the national level to the state level to the county to the city to the locale. There have to be organizations of you that essentially will have to make decisions of where the next MRI goes. Because that money, all that money is going to be publicly decided upon because it's gonna be in a public treasury.
William Bronston: That's what they mean when they say the government's going to run the health care system, which they use an argument against single-payer. Who is the government? We are potentially the government, if we choose to take on that struggle, and it is a worthwhile struggle. You took the struggle on to Willowbrook, and look, we won. I mean… [sighs] This is not bragging. I decided I was gonna bring this place down by myself.
William Bronston: Why? Because that pig that ran the place fired all the teachers 'cause the teachers asked him please to have the ward workers support their work in the afternoon and evening shifts and to keep the training working for this token group of people, and the bastard fired all those teachers. And I thought, "That's the end of that. He's a--he's a done dog," and I began organizing. And I tried organizing the workers 'cause I came here 'cause I was one of the physicians for the Black Panther party on the eastern seaboard. And I thought that this was the largest black factory, that there would be a lot of Panthers here.
William Bronston: There were none. Instead, what there was was a public union, CSEA, with administrators in the same union as the workers, so nothing was happening there, and a black nationalist union that essentially had every member's membership card automatically go to the attorney general. Didn't smell right to me. And so the only leftover constituency that had the chops to bring about the change were the parents.
William Bronston: And so we had to go to the parents, and organizing the parents was a piece of cake. All we had to do was let them in the door, open the door, let them see the truth of this monstrosity. They were not allowed in the buildings. The workers would bring the kid to the door and propel them out for the weekend or whatever. They were not allowed in the buildings. And so Mike and I began having parent meetings in our buildings and asking the parents and the workers to talk to each other about what would make a difference. And it was a prairie fire. And then the Marcarios, the man who just stood up, was the head of the down syndrome organization in the community.
William Bronston: And then fortunately, because I was trained by one of the finest pediatricians in child development in the country in Los Angeles at Children's Hospital, I knew everybody in the field in the world. And so I just began inviting my teacher to come to look at Willowbrook and then give a talk outside in the community to families, to bring Gunnar Dybwad, who was the head of the Association of Retarded Citizens in, to bring [inaudible] in, to bring Bank-Mikkelsen in, to bring everybody I knew that was a world-class child development killer to come, to look at this thing and then to talk about what the alternative is 'cause they knew what the alternative was.
William Bronston: They didn't talk about how bad this was. Everybody pretty much knew how bad this was. All they had to do was put out how good it could be if this bad thing wasn't there 'cause this bad thing was a black hole. It was sucking up all the money. All the money was going here. There was no money going to the community, none. And Hammond, the director of the institution, essentially had sign-off on every public grant coming into the county because he was the chief state officer in the community. So you gotta understand this is--this thing--the iniquity happens at a very high level, and then it just drips down. It infects everything below it, but you've gotta not attack an intermediary or a symptom of the problem. You gotta go to the origin of the problem. You gotta understand that this meant big money for Nelson Rockefeller and expansion of Republican hegemony in the state of New York for a long time, these public works.
William Bronston: Yes, sir?
Audience Member: As somebody who witnessed a population of disabled people in the hands of bureaucracy…
William Bronston: Yes, sir?
Audience Member: Currently in New York state, there is Medical Aid in Dying Act is being considered. I'm gathering you're from California.
William Bronston: What is that called?
Audience Member: Medical Aid and--
Other Audience Member: Medical Aid in Dying Act.
William Bronston: Dying Act?
Audience Member: Dying Act.
William Bronston: It's a piece of legislation in New York?
Audience Member: [inaudible]
William Bronston: What does it offer?
Audience Member: I'm sorry?
William Bronston: What does it give us?
Audience Member: Death, death by insurance.
Other Audience Member: Medical Aid in Dying Act.
William Bronston: Oh, oh, I understand. I understand. Suicide, right, right, assisted suicide.
Audience Member: It's been co-sponsored--sponsored by--in the Senate by Diane Savino.
William Bronston: Yeah.
Audience Member: And co-sponsored by four members of the Senate.
William Bronston: Yeah.
Audience Member: But what is your take on that, having witnessed a large population which would be in danger, it's my belief, right, by this legislation?
William Bronston: My cousin, my first cousin just jumped off a seven-story building last week and killed herself. She lives in Rome. I just got the message from another first cousin that lived in Paris. People have to have the right, they have to have the right, if they have their faculties, to choose how to end their journey. Now, the danger is, our community that may or may not be able to provide informed consent. And that's a real danger, and there have to be safeguards in place to do that. That's a political discourse that has to be held. It's not good or bad in the abstract as a totality. It's only bad if it is used to exterminate unwanted people, elders or whatever prematurely, people with special needs prematurely, right?
William Bronston: It's a powerful and meaningful conversation that can be used as an organizing tool if you're not rigid about the solution. What you want to do is you want to get at the process somehow or another so that you can work it. The only way we can live is through policy legislation. It's, I mean, we live in this country, and short of a change in the whole nature of governance, we've gotta deal with the governing apparatus. The problem is to make sure that the people in office are honest. The people who stopped the single-payer bill this last year in California, the guy was the, one guy, the speaker of the assembly refused to let the bill out of committee to be heard, to be amended, and he gets $450,000 from the health industry. Public knowledge.
Audience Member: May I press the point?
William Bronston: Please.
Audience Member: Had that been legislation like that in the past in New York state when you were here at Willowbrook?
William Bronston: No, no, this is all new.
Audience Member: [inaudible] ask you was there.
William Bronston: Oh, no, I'm saying…
Audience Member: Had there been…
William Bronston: Oh, yes?
Audience Member: What would from your view because I think you have sort of a unique view here, having gone through that and seen what bureaucracies can be like. What do you think that would have been like? [inaudible]? I don't mean to put you on the spot.
William Bronston: Yeah, yeah.
Audience Member: It's…
William Bronston: Yeah. Let me tell you that the people who ran Willowbrook were totally incompetent, and they were idiots. They needed to be in the institution. I mean, they pretended like they knew what they were doing, but they didn't really know what they were doing, and I don't think that there would have been a killing field here apart from the killing field caused by the deprivation that was universal in the place; not adequate food, not adequate environment, not adequate anything. I mean, there wasn't anything that worked here, nothing. So they, look, they needed those people for money. No matter how near-dead a person was, they needed to keep them here in order to get that Medicaid reimbursement. It would not have been in the interest of the state to eliminate their unwanted population. They're too valuable a commodity in order to fund the system. Does that answer your question?
Audience Member: It does answer my question.
William Bronston: There was another hand. Yes, ma'am?
Audience Member: Yeah, I wanted to know how those pictures that you showed were obtained.
William Bronston: I shot most of them. They were shot by many photographers that came in when the exposé happened. My book, "Public Hostage," will have 100 of these pictures, but they won't look fuzzy like this. They'll be really beautiful. I don't know exactly when it's gonna come out, but I'm hoping to finish it by the end of this year. Eddie?
Eddie: Bill, I think we need to end soon.
William Bronston: I'm sorry?
Eddie: I think we need to end soon.
William Bronston: I thought we were going to 4:30.
Eddie: There's another class coming in at 4:30. We also have refreshments outside, so.
William Bronston: Okay, can I take a couple more questions?
William Bronston: Yeah.
Audience Member: One quick question.
William Bronston: Please.
Audience Member: AARP represents the significant number…
William Bronston: Of insurance.
Audience Member: Of people, a lot of whom have not yet been on Medicare, between 50 and 65.
William Bronston: Yup.
Audience Member: Plus all the Medicare people. In your organizing, do you know what position, if any, they have taken on these two bills in Congress?
William Bronston: They're against. They're against. AARP represents the insurance industry. They're a quasi-insurer that masquerades as as an elder organization. They're not. They're not, and it's like the NRA. It's like the NRA. I mean, the head people at the AARP, they may be polite. They may be nice. They may be social. They may be beautiful, but they are the opposition.
Audience Member: As a follow-up, I am aware, and I actually looked at the 1099 that AARP is required to file.
William Bronston: Yeah.
Audience Member: And there's over 15 staff members making over $1/2 million a year plus benefits.
William Bronston: Right.
Audience Member: And I was curious to see what their income was from their affinity programs in a [inaudible] million dollar…
William Bronston: Exactly. Listen, you haven't thought about the meaning of single-payer in terms of the entire disability defense network. What's gonna happen to ARC, to UCP, to epilepsy, to autism, to cancer, to breast cancer? All those organizations that are now there to compensate for this grossly inhuman system won't have to do that anymore. They're gonna have to find another role to play, which has to be political. It has to be to clean the system up and to transform it, which will take a decade. Once we have single-payer, it'll take a decade in order to reorganize the concentration of services in the society to get them to where they're really serving the people, which means there's gonna have to be built in a tiered, democratic decision-making process made up of ordinary people in order to change the lay of the land. Yes, ma'am?
Audience Member: In New York we're going to a managed care system in two or three years.
William Bronston: Exactly.
Audience Member: What are your thoughts?
William Bronston: Listen, single-payer would wipe that out. Managed care means that there is a third-party middleman that's gonna tell your doctor what he or she can or can't do. Out. Out! The insurance industry has to be outlawed and eliminated entirely from the conversation. You will not be able to buy out of single-payer in America, and single-payer in America, which has twice the dollars of every other country on earth in terms of what's going on in terms of its medical services, will essentially be the most advanced and the most comprehensive and the simplest system on the planet.
William Bronston: There won't be a dual system like they have in Britain. There won't be a triple system like there is in Israel. Or Australia or Japan, all of whom have variations but highly-regulated services so that it's not working like America. America's the most vile, the most inhuman, the most money-grubbing system on the planet with twice the amount of money, so we're getting there, and here's the hard part. Somebody was saying, Jim Conroy, who's sitting in here somewhere, was saying how, yes, Jim, I'm sorry. Forgive me, that this is a lifetime struggle. We're not gonna see the end of this. But every day, every day you can align yourself to make a strategic difference. I just want to invite you to think big.
William Bronston: Taking out Willowbrook meant going against the governor of New York. And in order to get there, I had to be able to set up a network strong enough, caring enough, angry enough, loving enough to go after the governor with a federal class action lawsuit. That's who this fight, this suit was against. It was against the governor of New York. And so if you have to take on the state, it may be easier than taking on your friends that are opposing you in some little, you know, operation that you're doing which takes up the same amount of time as going after the governor. Let's fix the system. Then we'll work with our friends that we're having differences with.
William Bronston: Thank you.
Audience: [applause continues]
William Bronston: So, yeah, go ahead.
Audience Member: I just want to say I'm a student here.
William Bronston: Yeah.
Audience Member: At CSI, and I just came here because it was extra credit for [inaudible]. Then I came here because, you know, it was for extra credit, and now I realize,you know, 'cause I'm a student that works for DSP, [inaudible] resources. Yeah. Yeah, and, oh, thank you. And I definitely got really educated coming here. I just came for extra credit, and then I realized this was about people with disabilities, and you definitely gave me, like, motivation to become a voice for people to make a difference. So when you talk about, you know, young guys trying to step up, I do want to step up and be a leader to people with disabilities and…
William Bronston: What are you studying to do?
Audience Member: I'm a psychology major, so.
William Bronston: Okay, so you're gonna get your doctors in psychology, or your masters?
Audience Member: Hopefully.
William Bronston: Good.
Audience Member: I don't really like school that much, so.
William Bronston: We walk on two feet. You'll walk in psychology, and you'll walk in justice.
Audience Member: [inaudible] So thank you for [inaudible].
William Bronston: Thank you for your testimonial. I really appreciate it. Anybody else life changed? [laughs] I want to thank the dean and his compatriots and the associate dean that are here and Chris, who put this together, and David Goode, who helped put this together. I mean, this is an important conversation, really an important conversation, and it needs to continue. It needs to continue. Somehow or another, this has to happen at least once a week somehow in this framework so that you can talk the truth and you can deal with your pain and you can also come to grips with the fact that you may not be able to knock off the top problem quickly.
William Bronston: But trust me, I haven't worked on anything in my life that hasn't taken ten years minimum, minimum. Willowbrook took 30 years to close after the consent decree. Give me a break. I mean, you know, we wanted to bring the national guard in and declare a national emergency to evacuate the place at the point that we filed suit. It never happened, and they fought us. They fought us, and now the question is whether this guy Lastner or whatever his name is, the new commissioner, the head guy is any different than the head guy, the head of mental, you know, illness, mental health services in New York when we fought Willowbrook. This belongs in the education sector. This system, I mean, it's just a continuation. This college could become and hopefully will become a world leader in the most innovative thinking about transformation of society and generating a tertiary faculty to teach other people how to change society. I mean, that's what's gotta happen. You can't learn dross and then take on, you know, evil. You gotta really have an imagination and at some level know that if you go down, it's worth it. It's worth it. It's worth it. The consequences are enormous. I mean, emancipation is enormous if it happens. Listen, go and there's food to be had, and thank you very much for your patience.