Researched and Written by Sarah Handley-Cousins
Recorded and Produced by Sarah Handley-Cousins and Elizabeth Garner Masarik
Produced, Edited and Published by Marissa C. Rhodes
In 1973, Richard Nixon signed the Rehabilitation Act, a bill intended to increasing hiring, extend rehabilitation services and increase assistance programs for Americans with disabilities. In the wake of the Civil Rights Act of 1964 and Voting Rights Act of 1965, politicians and activists discussed the bill in explicitly civil rights terms, arguing that as the federal government had protected the civil rights of Black Americans and women, it must also protect the rights of disabled people. While there had been other bills focused on rehabilitation and services before, the Rehabilitation Act stood out to disabled Americans for one reason: one sentence in Section 504 of the bill. While other bills had appropriated money for services or called for programs, they didn’t include a provision for enforcement – but Section 504 did exactly that. Disabled people saw an oppportunity: Section 504 could radically change life for disabled people in the United States. And when the federal government failed to fully enforce Section 504 in the years after its passage, disabled people took matters into their own hands.
I’m Sarah
And I’m Elizabeth
And we are your historians for this episode of DIG
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Sarah: As always, we want to start by acknowledging the scholarship that we relied on to write this episode. For the more general history of disabled life in the mid-20th century and big picture view of the disability rights movement, I used one of my favorite texts on US disability history: Kim Neilsen’s A Disability History of the United States. This book is a quick and engaging read, and teaches super well. I also used Joe Shapiro’s No Pity: People with Disabilities Forging a New Civil Rights Movement. I also relied on the oral histories collected by Fred Pelka in a book called What We Have Done: An Oral History of the Disability Rights Movement, which I think is indispensable for really rich personal reflections on disabled life and activism. For the role of the Black Panther Party and race in the movement, I used Sami Schalk’s great Black Disability Politics. I also used parts of disability activist Judith Heumann’s memoir, Being Heumann. All fantastic books, all great reads. Also, I want to say that since we’re using so many oral histories in this episode, we’ll encounter language that is no longer considered acceptable or language that is only acceptable when used by certain individuals or groups. We’re only using this language in direct quotes. Similarly, we’ll have to tell some stories that are frankly offensive, and don’t reflect how any of us would talk about disability today – but since they’re reflective of attitudes of the time and integral to the lifestories of some of our characters, we’ve decided to include them. Listen with care.
Elizabeth: Disabled people have always been part of the fabric of American society, and questions about what duty society owes them have been ever-present and ever-evolving. In this episode, I’m going to be concentrating on a small number of fairly young people, mostly physically disabled. That’s not representative of all disabled people in the United States, of course, and it’s also not representative of all disability history of the 20th century, but it’s an important part of the story of the disability rights movement.
In the mid 20th century, disability occupied the public consciousness more than ever for a number of reasons. One reason was a series of public health crises that resulted in highly visible disabilities, especially affecting children. For instance, several polio epidemics took place across the United States during the 1950s. Polo is a highly contagious disease that disproportionately affects children. While most people who get polio might only have a sore throat or cough, a small percentage will develope paralytic polio, which destroys motor neurons in the brain and spinal cord. While polio is considered a childhood disease, paralytic polio is more common in adults – in other words, more kids will get polio, but fewer of them will develop paralytic polio. But either way, because the disease spread rapidly among kids in the 1950s, many children did develop the permanent damage of paralytic polio. The most severe cases caused such extensive paralysis that children needed to live in giant iron lung devices, which used air pressure to manipulate their lungs into taking in and expelling air. Those with less total paralysis were often left with permanent mobility impairments, requiring the use of adaptive tools like crutches, wheelchairs, and leg braces.
Sarah: Famously, polio was what caused Franklin Delano Roosevelt’s paralysis, which he largely hid from the public eye. That was precisely what made polio such a huge concern – the disabilities that it created were very visibly apparent, making for a seemingly large population of visibly disabled children. The polio vaccoine, developed in the mid-1950s at the University of Pittsburgh by Jonas Salk and released for mass use in 1955, very quickly made rampant polio epidemics a thing of the past. (Side note: My grandfather had polio has a child and while he escaped some of the worst effects, he did have permanent damage to the muscles in his leg, exacerbated by post-polio syndrome, which develops in a large percentage of polio survivors later in their lives, causing more muscle damage even many decades after initial infection.) Polio was not the only public health crisis in the 1950s and 1960s, though. In 1961, the widely prescribed pharmaceutical thalidomide, which was a minor tranquilizer used to treat morning sickness and anxiety in pregnant women, was discovered to be causing birth defects including brain damage and shortened limbs. Thalidomide was largely prescribed in Europe, specifically in Germany and the UK, but the crisis made global headlines, and images of the affected babies published in popular magazines and newspapers heightened anxieties about disabled children. In the United States, thalidomide hadn’t been widely prescribed, but another epidemic, this time of German measles (or rubella), caused similar worries and reflected the fears caused by the thalidomide crisis. (Another side note, my husband’s grandmother took thalidomide in Scotland when she was pregnant with his dad in the 1950s!) In 1964, the CDC declared a German measles epidemic in the United States, and told pregnant women to avoid exposure – if a woman contracted rubella in the first 4 or 5 weeks of the pregnancy, the “danger of having an abnormal baby was 50 percent.”[1] Babies with birth defects caused by German measles could be born blind, deaf, heart defects, and with intellectual disabilities.
Averill: All this to say, there were several reasons why there was a visible population of disabled children in the United States at the midcentury. Of course, not all children became disabled because of these diseases, but they were the causes that made headlines and caught the attention of average Americans. And the way that popular magazines and newspapers described the birth defects by German measles should give us a sense of just how Americans thought about disabilities at the midcentury: rubella birth defects “malformed,” “hoplessly deformed,” “abnormal,” “defective,” and “dangerous.”[2] Disability was highly stigmatized, and services, supports, and civil rights were few. Oral histories from people who were disabled children in the 1950s and 1960s also give us some insight into the experience of being disabled at the time. Corbett O’Toole (Sarah will interject: who I had the great pleasure to meet not too long ago!) got polio when she was just over a year old. As a baby and toddler, Corbett was kept in a full body cast, from neck to toes, meaning that she could only lay flat on her back or stomach. When she was a little older, she was able to learn to walk with crutches, braces, and various other supportive devices.
Sarah: Corbett O’Toole’s experience when she was a little older also tells us about the difficult decisions that faced parents and kids when it came to school. While there were speciality schools designed for some disabled kids – like schools for deaf or blind children – public schools were not required to provide disabled children with an education. Most disabled children were either kept at home, sent to speciality schools, or institutionalized in ‘schools’ that were really more like nursing homes, where they would (sometimes) receive minimal services and no education. When Corbett was old enough for school, her parents were faced with this difficult decision.
Let’s hear from O’Toole’s oral history directly here: “My parents – my mother, particularly – really thought a lot about the options that I was going to have as a disabled kid. There were two different public elementary schools within walking distance. In Boston, another option was to send me to a school called the Industrial School for Crippled Children – that was the official name of it. It was across town. They bused kids in from the larger Boston metropolitan area. Basically, it was a warehouse for kids that the local schools were refusing to accommodate. It wasn’t a public school in the sense that it didn’t have a quality education, it didn’t have science labs. It was a quasi-institutional environment. My mother decided that she was going to send me to public school. She called the local public school and they told her in the spring to come register for the fall. So she registered. She called them and said, “My daughter has polio, she walks on crutches.” At that time, the kindergarten classroom was in the basement with the mentally retarded classrooms. The other classrooms were upstairs….So I went off to school and I was functioning pretty independently. When the kindergarten year was ending, the principal went to my mother and said that i was not going to be allowed to continue in public school because there were stairs. You had to go upstairs to get to the first and second grades. They had decided it was too dangerous for me to do that, and that it was inappropriate for me to be in public school anyway. They felt they didn’t have to accommodate a disabled kid, and that there was the Industrial School for Cripped Children if my mother really thought that having an education was important.”
Prod 2: Diane Coleman, who had spinal muscular atrophy that caused mobility impairments, had a similar experience. She recalled: “After mainstream kindergarten, the result of the diagnosis was to put me in segregated special ed., for gardes on through six. It was called Upjohn School, named after the Upjohn Company, which was based in Battlecreek, Michigan. Upjohn School was attached by a corridor to another school – a regular kids’ school. I remember every Thursday they would have “handicapped kids” go to the library, and it felt like the cleared the corridors so that nobody would see us. We would go to the library, get our books, and come back to our segregated school…Now, this was in the fifties and early sixties. Disability was bad – that’s how I was raised. THat part of you was bad. What’s good about you is these other things, but what you need to do is [to] accomplish in spite of your disability, which is a bad thing. Now, I’m not saying that was emphasized – it was just understood.”
Sarah: While some parents felt pressured – whether by teachers, doctors, or society – to institutionalize their children in these situations, other parents started to refuse to accept that their children didn’t deserve the same kinds of education that non-disabled kids got. Diane Lipton, whose daughter Chloe had cerebral palsy, described how Chloe was essentially segregated from the nondisabled children in two separate buildings separated by a fence.[3] Dennis Haggerty’s son Dennis Jr. (nicknamed Boomer) was intellectually disabled. His doctors recommended that he be institutionalized, and after trying to find other alternatives, Haggerty and his wife chose to send their son to the Pennhurst State School and Hospital, where they believed he would live with other disabled children, which they thought might be beneficial. But Boomer was not happy in the institution. Pennhurst was far from where the Haggertys lived, so Haggerty had to fly there once a month. He would take Boomer out of the hospital for the weekend, but Boomer would cry inconsolably when it was time to go back. Frustrated that there was so little support for the parents of disabled children, Haggerty joined the Pennsylvania Association for Retarded Children (PARC) and became an active member. Once when Haggerty arrived to visit Boomer, he had injuries to his ear. The attendants told Haggerty that Boomer had fallen in the shower – but Haggerty was suspicious, so he used a kids’ doctor’s kit to pretend he was a doctor and essentially go undercover to investigate the institution. While undercover, he learned that the administration had lied, and Boomer’s ear had actually been cut when another young man there had been trying to cut Boomer’s hair and accidentally cut him.
Prod 2: Angry that the administration had lied to him, Haggerty pulled Boomer from the institution. But he wasn’t done with Pennhurst. First, he insisted that they change their name – after all, he argued, Pennhurst wasn’t a school, and it wasn’t a hospital. They changed the name to the Pennhurst Center. But then something worse happened: Haggerty learned about the death of a young man in the Center named John Stark Williams. His mother arrived for her regular visit – like Haggerty, after a long trip – and only then learned that her son was dead. No one had notified the family of his death. The excuse offered by the administration of the institution was that they had 2800 patients and “things happen.” Haggerty arranged for an investigation into the death, including an autopsy, that proved that his death was from negligence. He then went back to PARC and asked if they would authorize a lawsuit against the state of Pennsylvania. They did, pointing to the landmark public education case, Brown v Board of Education of Topeka, Kansas, which ruled that segregation in public education constituted ‘separate but equal’ and was a violation of disabled childrens’ Constitutional rights. The result was a landmark case, PARC v Commonwealth. The court ruled that, “…all mentally retarded persons are capable of benefiting from a program of education and training… It is the Commonwealth’s obligation to place each mentally retarded child in a free, public program of education and training appropriate to the child’s capacity. Placement in a regular school is preferable to placement in a special school class is preferable to placement in any other type of program of education and training.”
Sarah: PARC v Commonwealth was a huge win for disability rights, but it was a Pennsylvania case. The lawsuit also came within the context of other big exposes of other institutions, particularly the expose of the Willowbrook State School in Staten Island, New York. That “school” was famously exposed by Geraldo Rivera, who at that time was an investigative journalist and not a right-wing weirdo. But while these cases involved institutions that purported to be schools, the outcome of the cases was much more focused on ending and reforming institutionalization rather than proactively creating more education opportunities for disabled children. The other thing about PARC v Commonwealth is that it came from the activism of parents, on behalf of their children. The parents movement was really powerful and led to some important reforms, but it also centered nondisabled people, while the disabled people who were most affected by the problems and the reforms were largely passive, even invisible. In New York City, a young Judith (Judy) Heumann was intent on making disabled people themselves part of the change for civil rights for disabled people. Heumann had polio as a baby, and the resulting paralysis meant that she used a wheelchair. “Though my life wasn’t marked with the little “Whites Only” signs that signaled segregation in the South,” Heumann wrote in her memoir, “the life I lived was also a segregated one.”[4] When she was five, her mother took her to the local public school to register her for kindergarten. Heumann recalled: “My mother helped me put on a nice dress, pushed me to school, and pulled my wheelchair up the steps. But the principal refused to allow me to enter. “Judy is a fire hazard,” he said, explaining to my shocked mother how the school system saw wheelchairs as a dangerous obstruction. Children who used wheelchairs were not permitted to attend school. I would stay home.”[5]
Elizabeth: Judy’s mom worked every possible angle to try to get her into school. After years of home instruction, Judy finally was placed in a school called Health Conservation 21, a program that was run out of the basement of a public school. She entered a classroom filled with kids of all different ages, from kindergarten up to late teens. They became fast friends, and Judy loved it – but they also knew that they were being kept separate and given an inferior education. Many of her friends – all in their late teens – could not read. “Not only were we not required to participate in the American system of education,” Heumann wrote, “we were actually blocked from it and hidden away in the basement.”[6] After high school, Heumann attended Long Island University, where she wanted to study to become a teacher, but friends warned her that the US Office of Rehabilitation, which funded her education as part of their mandate to help disabled people find employment, might not consider it a realistic career. Instead, she studied speech therapy, which she thought “Rehab” might find more appropriate for a disabled person. That wasn’t the only challenge – the New York City Board of Education had never hired a teacher that used a wheelchair. Knowing it would likely be a fight, she preemptively talked to the American Civil Liberties Union, who advised her that they would be there to help if she was turned away from a career as an educator. But that still wasn’t it – Heumann lived in the dorms, but the buildings weren’t accessible: “The dorm I lived in had two steps into the building, no ramp, and a step into the bathroom – and I did not yet have a motorized wheelchair. This meant that every day, every time I had to go to the bathroom, or into the dorm, or to class, I had to ask somebody to help me up the steps, or push me to where I was going.” She had to ask for help during the day even to use the bathroom – so she had to learn who on campus was safe to ask. Every day, just to go to school, Judy faced a hostile and inaccessible environment.
Sarah: As a young adult, Heumann and several disabled friends started attending meetings of disability advocacy groups, but were frustrated that all of the groups were focused on individual disabilities – a group for blind people, a group for people with mobility impairments, etc – but no groups that created a coalition across types of disability. Eventually, they formed a group called Disability in Action, which focused on civil rights advocacy for disabled people. In short order, people were reaching out to DIA with complaints about education access and support services. Pat Figueroa, a member of DIA, recalled that two of the biggest issues (beyond education and access, that is) were housing and accessible transportation. “We just answered them to the best of our ability,” Heumann recalled, “referring them to people that we thought maybe could help, or giving them information about what we thought they might want to do. We all were working full time.”[7] They had a hard time narrowing down their area of focus because there was just so much. Eventually, their focus narrowed in on the question of power. “Who are the powerbrokers?” Heumann asked, “and how can we influence them?” As they tried to trace the power, they came to the conclusion that local concerns, while important, weren’t going to bring the systemic change that they really needed. Instead, they turned their attention to the federal level. It was good timing, because disability rights were about to become a major federal issue.
Elizabeth: In 1972, president Richard Nixon vetoed the Rehabilitation Act, a law that would strengthen the rehabilitation services offered under several pre-World War II laws that were passed largely with disabled World War I veterans in mind. (That was the law that created the US Department of Rehabilitation that had funded Judy Heumann’s college education.) This was actually the second time that Nixon had vetoed the Rehabilitation Act. Clearly, Heumann and the DIA saw this as both a challenge and an opportunity. They printed hundreds of fliers – fliers shaped like tombstones, actually – and then put together a demonstration in front of the federal building in Manhattan where they set up coffins to demonstrate that Nixon killing the Rehabilitation Act was “killing” disabled people. But they didn’t realize that the building was in a super low traffic area and they got zero traction. When some police came to remove them from the area, they actually asked the cops where Nixon’s campaign headquarters were – it was an election year – and the cops told them. (LOL) So they packed up their things and moved to the campaign headquarters, where they encountered baffled staffers. According to Heumann, “Cripples threw the Nixon people off guard. They didnt’t know what to do. We were there, and we wre chanting, and its four days before the election.” Someone gave them the advice that they didn’t get any press because they didn’t have any Vietnam veterans involved, so they called the Democratic candidate George McGovern’s headquarters (LOL), who hooked them up with two veterans. This time, their numbers bolstered with Vietnam veterans, they marched to Times Square and shut down traffic. Once they had press, they marched back to the Nixon headquarters, where they continued to protest his veto. While DIA had many members, another DIA member Pat Figueroa considered Judy Heumann as key to the group’s success. “I think the success of the DIA,” he recalled, “this small but very radical group, was something that some of the other groups had not been able to duplicate. DIA was Judy, all about Judy and what she wanted for people with disabilities. Other groups did not have a young woman that was bright, attractive, and a great spokesperson. She was talented.”[8]
Sarah: On the opposite coast, a similar movement was brewing. This movement was spearheaded by a young man named Ed Roberts. Like Judith Heumann, Ed was a childhood polio survivor. The resulting paralysis meant that Roberts had to live in an iron lung. To quote historian Fred Pelka, “Because the muscles that worked his lungs had been paralyzed, he could not breathe for long on his own. He spent eighteen hours a day in an eight-hundred-pound iron lung. It was yellow, alien looking, and as big as a telephone booth.”[9] Roberts, a previously very active teenager, was devastated. When he asked his parents if he would ever go to college, get married, or have a job, his parents told him no – not out of cruelty, but because all the medical professionals they encountered had told them the same thing. A doctor had even told his mother that it would have been better if the polio had killed him, rather than (and I’m quoting) him living as “a vegetable.”[10] Self-control and self-determination became his entire focus – how could he assert control over his own fate living in an iron lung? The first thing he latched onto was food: he could choose whether or not to eat. No one, including the doctors and nurses who seemed to direct everything in his life, could tell him whether or when to eat.
Elizabeth: Instead of being a sickly vegetable, Roberts started to focus on how to to expand that sense of control. He learned the method of frog breathing, a technique for using the muscles of the neck and face to force air into his lungs, which allowed him to spend time outside of the iron lung. He returned to school using a wheelchair. When kids started to stare at him, Roberts made the decision that they were staring because he was suddenly interesting, even exciting. “It was like being a star,” Roberts recalled, “so I decided to be a star, not a helpless cripple.”[11] Roberts thrived in school, but the principal still refused to allow him to graduate because he had not completed required phys ed and driver’s ed courses – courses that were inaccessible to him. His mom, Zona Roberts, a former labor organizer who took no shit, (to quote Joe Shapiro) “raised hell,” and Ed was allowed to graduate – with his physical therapy classes counting for his phys ed.
Sarah: After high school, Ed Roberts attended a community college, in hopes of transferring to UCLA, which had a dedicated program for disabled students, created initially to cater to to disabled WWII veterans using their GI Bill benefits. But his academic advisor, who recognized how smart and promising Roberts was, suggested that he apply instead to University of California at Berkley instead. Remember that the US Department of Rehabilitation paid for Judy Heumann’s college tuition? When Ed Roberts tried to get California’s Department of Rehabiitation to pay for his tuition, they refused, claiming it was “infeasible” that Roberts ever be able to work. Roberts’ academic advisor, the dean of students and the president of his community college all appealed, but the department continued to refuse until they went to the press, creating a wave of negative reporting on the department’s decision. But, like with Heumann, Roberts faced more challenges. Even with the guarantee of tuition from the department of rehab, Berkeley was reluctant to admit him. One dean told Roberts, “We’ve tried cripples before and it didn’t work.” Nothing on campus was accessible for wheelchair use – not the library, not the classrooms – and the dorms weren’t structurally sound enough to hold the iron lung he still used for long periods of time.
Elizabeth: Finally, they hit on a compromise: Roberts would live in the student infirmary, Cowell Hospital. It wasn’t an ideal dorm – keeping him not only separate from the rest of the Berkeley social life but also marking him out as a patient rather than student – but it was a way forward. Using a new and innovative new program funded by the state of California, he was able to have attendants help him with his daily needs. He also needed someone to push his wheelchair. But when he fell in love with a young woman that lived near his mom, he taugh himself how to use a motorized wheelchair (despite his rehabilitation counselors telling him he could never control it himself!) so he could ensure a little alone time. But moreover, the motorized wheelchair meant freedom – he was no longer reliant on a friend, family member, or attendant, to get him around Berkeley.
Sarah: Before long, the word spread that it was possible for disabled people to attend Berkeley because of the compromise it had struck with Roberts. Soon, another disabled young man lived in the Cowell Hospital: John Hessler, who also used a wheelchair, followed over the succeeding years by several more people. Now, it was the late 1960s – if you know anything about US history during the 20th century, you might be already imagining what the Berkeley campus was like at this particular moment. The campus was a hotbed for student activism, and Roberts, Hessler, and the others became active in various political causes, such as the anti-Vietnam war protests, Civil Rights movement, and women’s liberation movement. The group of friends, all wheelchair users, started calling themselves “the Rolling Quads.” Suddenly, the Cowell Hospital became a kind of consciousness raising space – a phrase that referred to something that happened in the women’s liberation movement where women experienced a kind of political and feminist awakening through discussions with other women about their shared experiences. The group spent their evenings discussing their frustrations with inaccessible environments, insulting social treatment, and lack of independence.
Elizabeth: Soon, the California Dept of Rehabilitation made the Cowell Hospital dorm an official program of the department. This also meant that the Dept of Rehabilitation believed that it had the authority to determine who did, and who did not, receive the state tuition funding. In 1968, a rehabilitation counselor tried to kick out two men from the dorm citing their low grades. This was unacceptable to the Rolling Quads. This was evidence, the counselor explained, that they were not likely to able to work upon graduation, thus making them unworthy of state funding. “Nobody was going to threaten our independence, or the program itself” Roberts later explained. Roberts petitioned university administrators, appealed to other student groups, and went to the press. The protest worked, and the counselor was reassigned out of Cowell. From there, the groups started to expand their protests beyond campus. The city itself was inaccessible to wheelchairs. After all, curb cuts were not standard, meaning that the Rolling Quads (and others) could not navigate the city or access most amenities. When the city of Berkeley planned to renovate a shopping center, the Rolling Quads showed up on mass for a city counsel meeting to insist that the city include curb cuts – which were far from standard at the time. The demand was successful, and Berkeley agreed to appropriate money to include wheelchair ramps on city streets.
Sarah: The Rolliing Quads soon turned their attention to trying to find ways to live on their own outside Cowell Hospital. A few students had tried to move out, but only two had found accessible apartments. Roberts became involved in a program headed up by his old academic advisor from his community college to prevent Black and Hispanic students from dropping out of college. Traditionally, drop out rates were blamed on academic ability – in other words, the students who dropped out only did so because they couldn’t hack it. But his former advisor, Jean Wirth, was heading up a revolutionary project that saw other structural issues as the cause for dropping out, like lack of transportation, housing, food, or social connections. To solve those problems, Wirth used other students as peer mentors to help give rides, find jobs, and other supports. Roberts suggested that this method would work with disabled people, too. The two traveled to Washington and successfully lobbied for the program – likely because there were so few college programs for disabled students, appropriating funds for such a program was understood as cheap. Thus, in 1970, the Physically Disabled Students’ Program at Berkeley was born.
Elizabeth: The key feature of the PDSP was disabled people would provide mentor supports for other disabled people, with no nondisabled providing the kind of patronizing services that the Rolling Quads were accustomed to. The PDSP hired disabled folks to help make meals, arrange transportation, push wheelchairs, and provide other kinds of services, all with the intention of making life for disabled people at Berkeley as independent as possible. The group helped disabled students navigate the red tape of the college’s and the state’s bureaucracy to get their much-needed funding and services. A less expected service the PDSP provided was wheelchair repair services. As Joe Shapiro writes, the new motorized wheelchairs “had not been constructed sturdily enough for the vanguard of radicals who wre redefining what it meant to be paralegics and quadriplegics by zipping around the spread0out Berkeley campus.”[12] This unfortunately meant that their wheelchairs broke pretty regularly. So the PDSP set up a wheelchair shop with around the clock staffed by “wheelchair wizards” who not only fixed chairs but did all sorts of tinkering to make them even better. Soon, they were doing the same with vehicles to make them accessible to people who couldn’t operate the pedals with the feet.
Sarah: The PDSP helped clarify something for Roberts and his friends: what they were doing was not only providing supports but challenging the very definitions of disability. Disability had always been defined in medical terms – meaning that disability was understood as a deficit, something that a person was lacking as opposed to a person with a “normal” body. But Roberts came to think of disability as being created by a society that was created to be inaccessible – but that with supports (like those the PDSP was providing) disabled people could live independent lives. Living inside the Cowell Hospital, for instance, was saying that disabled people must defer to medical professionals and live inside parameters set by nondisabled people. The PDSP began to make a different kind of life possible. Students moved out of Cowell and thrived at Berkeley. But it was becoming clear that while PDSP was succeeding, it wasn’t going far enough – for instance, it only provided supports for students at Berkeley. In 1972, Ed Roberts and Phil Draper founded the Center for Independent Living, a program almost exactly like PDSP but designed for those outside of the college community. Operating on almost zero money (other than what the Rolling Quads set aside from their weekly poker games), the CIL started transportation program using a renovated, donated van. Within a couple of years, California governor Jerry Brown appointed Ed Roberts head of the Department of Rehabilitation – the very department that had told him funding his education wasn’t feasible.
What both Heumann’s DIA and Robert’s independent living movement shared was a focus on civil rights for disabled people. On both coasts, inspired by the precedents set by the Civil Rights movement and anti-war movement, the work of disabled people had brought about a Disability Rights Movement. And in 1973, Ed Roberts invited Judy Heumann to move to California, making this bi-coastal movement a national one.
Elizabeth: Amidst this burgeoning movement came another challenge: section 504 of the Rehabilitation Act. We mentioned before that President Nixon had vetoed two Rehabilitation Acts, in 1971 and 1972. Congress pushed one more time, and in 1973, Nixon finally signed the Rehabilitation Act. For everyone except the disabled activists in the DIA and Independent Living movement, this was simply an appropriations bill – a bill to use federal funds to pay for various rehabilitation services for disabled Americans. The federal government had funded programs like that since after World War I, so this particular bill was not all that noteworthy – in fact, the only reason Nixon had vetoed it was because he thought that the 1.55 billion it appropriated was too steep. But tucked at the end of the bill was a section – section 504 – that was very different. It read: “No otherwise qualified individual with a disability in the United States, as defined in section 705(20) of this title, shall, solely by reason of her or his disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving federal financial assistance or under any program or activity conducted by any Executive agency or by the United States Postal Service.” This constituted an enforcement power to the bill. In other words, the bill required that disabled individuals have equal access to federal programs, structures, and services – anything that received federal funds had be made accessible to disabled people. The wording was nearly identical to a section of the 1964 Civil Rights Act, the bill that revolutionized civil rights in the United States for racial minorities and women. Apparently, according to sociologist Richard Scotch, none of the Congressional staffers who worked on the bill had any recollection of where Section 504 came from. No one considered it noteworthy – no one, that is, except the disabled activists in the Independent Living Movement.
Sarah: When it became clear that the bill included a mandate to make the federal government accessible for disabled people, the Department of Health, Education and Welfare (HEW) estimaed that compliance would cost the federal government billions of dollars. Hesitant to take that on, the Ford administration dragged its heels. When Jimmy Carter was campaigning for president in 1976, he made a campaign promise to comply with Section 504 – but when he became president in 1977, his Secretary of HEW also balked at the expense of complying with the section. Plus, they reasoned, Section 504 could mandate that “alcoholics, drug addicts, and homosexuals” could claim protections – which seemed (to them) like a political nightmare. (HEW’s lawyers tried to reassure them that none of these socially marginalized groups were eligible, anyway, but it made little difference.) But disabled groups recognized that Section 504 had the potential to revolutionize life for disabled Americans. Frank Bowe, the executive director of the new organization the American Coalition of Citizens with Disabilities (ACCD) saw that the portion of the bill meant that “the vast reach of United States Govermnet funds, from schools to hospitals to mass transit facilities, meant that almost all of American life would be affected were section 504 to become effective.” Further, Bowe knew that it was an unspoken rule that if a provision of a law had not been enforced within three years, it was “for all practical purposes dead.” If 504 was going to go into effect, the clock was ticking.
Elizabeth: Bowe met with the Secretary of HEW, Joseph Califano, but the meetings seemed to go nowhere. At one point, Califano told Bowe that he didn’t even know about Section 504 before their meetings. After reading Saul Alinsky’s primer for activists and organizers, Rules for Radicals, Bowe determined that the next step was civil disobedience. In March 1977, Bowe’s ACCD called for “a massive sit-in demonstration in every HEW regional office coast-to-coast” starting April 5. Answering Bowe’s call, ACCD chapters organized sit ins and demonstrations in New York, Boston, Philadelphia, Washington DC, Chicago, Denver, and San Francisco. But for the most part, these demonstrations were very short, often less than 24 hours. Disabled protesters had difficulty accessing inaccessible buildings, and cops who responded to police the demonstrations often refused deliveries of food, water, and necessary medications that would have allowed the demonstrations to continue. San Francisco, though, proved to be the outlier. Judy Heumann remembered packing a handful of necessities (including a toothbrush and clean underwear) but not much more, assuming “well, we’ll be there for a night or something…but we absolutely did not plan for along sit-in in the building.”[13]
Sarah: San Francisco was also different because of the nature of Berkeley’s disability community. By 1977, Judy Heumann, Ed Roberts, and everyone involved in the Center for Independent Living had been working for years to bring attention to the issue of civil rights for disabled people, and their work had gotten them connections in state politics. The Center for Independent Living, led by Judy Heumann, had become an affiliate of sorts of ACCD, bringing those connections along with them. Ed Roberts was in the state government, for one – the head of the Department of Rehabilitation, appointed by the governor. They had connections with Frank Lantermann, a California assemblyman, and George Moscone, the mayor of San Francisco, plus connections to the local press. The activists reached out to other civil rights groups and supporters, like local church councils, a prominent local drug rehabilitation center called Delancy Street, the NAACP, and the Black Panther Party. (More on the Panthers in a moment.) This coalition would help to ensure the demonstration had far reaching community support. Heumann and her friend Kitty Cone circulated handmade fliers and leaflets around Berkeley to spread the word, and on April 5, dozens of disabled people showed up with sleeping bags and pillows, ready to stay in the office building for as long as it took.
Elizabeth: Heumann may have thought the sit in would only last a night, but she was way, way wrong. The group immediately made tentative schedules, aided by attendants who stayed with the disabled people they supported. Avril Harris woke people up, brought them coffee and made sure they got their medications. They held news conferences, realizing that if they didn’t invite the media they would have little control over the stories that would get published. (And they monitored the coverage closely!) They were media savvy – when they realized that the press was focusing too much on the perceived medical fragility of the demonstrators, they changed their approach to make sure they always brought attention back to the issues at hand. Kitty Cone told the story of one press conference when they had a demonstrator named Dale Dahl go out to talk about why having interpretation services in hospitals was critical. Dale was deaf, and told a story about a time when he had broken his neck and had to spend time in the hospital, during which time he had no way of communicating with the doctors and nurses caring for him. Because of this, he had no way of knowing about his condition. This approach gave the media powerful, personal stories while also drawing attention to the issues that were directly relevant to the enforcement of Section 504. (If 504 was enforced, Dahl would have been guaranteed an interpreter in the hospital.)
Sarah: HEW tried to limit that as much as possible. At one point, HEW had cut off all the phone lines on the fourth floor where many of the protesters were camped out. But disabled folks had brilliant ways of circumventing this shitty tactic for shutting down the protest. As the protest went on, a large crowd of mostly disabled folks and allies had gathered in the plaza outside of the federal building. Outside, while the demonstrators were occupying the building, folks outside were giving speeches, leading chants, and generally showing their support. I want to quote Corbett O’Toole’s retelling of how they got around the communication being cut off: “What would happen is we would be on the fourth floor and we would sign the news of what was happening in sign language to the people downstairs. Then an interpreter downstairs would tell the media what was going on up in the building and that’s how we avoided the communication blockade fo the FBI and the non-disabled people thinking that we couldn’t figure out how to survive.”[14]
Elizabeth: Critically, the only way the demonstration could continue was if they had food and water. The demonstrations in other cities had ended quickly because they had no food – not only could the protesters only bring so much food in with them, but the cops and FBI refused to allow supplies to be delivered to the protesters inside the buildings. In San Francisco, activating the existing networks of activist and community organization groups helped the demonstrators get around this other tactic for ending the sit in. The Black Panther Party (BPP) was the key piece that kept the protest going. Corbett O’Toole said, “I think the secret history of the 504 sit ins it that we never, ever would have made it without the Black Panthers. The Black Panthers fed us dinner – they fed 150 people of which only was a Panther – every single night for the whole demonstration. We never would have survived without them.”[15] In that quote, O’Toole mentioned that there was one member of the Black Panther Party participating in the sit-in; she was referring to Brad Lomax, a member of the Black Panther Party who was a blind wheelchair user. Lomax wasn’t alone at the demonstration, though – he was accompanied by his attendant, Chuck Jackson. Lomax served as a kind of bridge between the BPP and the disability activist groups like the Center for Independent Living. Lomax had brought the disability civil rights work to the Panthers, who folded it into their platform before and after the 504 sit ins.
Sarah: According to scholar Sami Schalk, advocacy for disability civil rights was in line with the Panters Ten Point Platform, the ten statements that guided their mission as an organization. For instance, when they revised the platform in 1972, the BPP had changed Point 1. Instead of calling for “the power to determine the destiny of our Black Community,” in 1972 Point 1 was changed to “the power to determine the destiny of our Black and oppressed communities.”[16] An additional point was also added that called for “completely free health care for all Black and oppressed peoples.” By 1977, the existing platform was entirely compatible with the call for disability civil rights. So the BPP was engaging with disability civil rights work generally, but the most well-known part of their participation in the sit-in was their efforts to feed the protesters. Again, this was a natural extension of work that the BPP was already doing – in 1969, the BPP had started the Free Breakfast for School Children program, dedicated to providing Black children in Oakland, California, linking nourishment and community care to the fight for liberation. (Elizabeth has talked about this in her excellent episode on the Black Panther Party.) So when Brad Lomax notified BPP leadership that he was participating in the demonstration, the Panters showed up. As Corbett O’Toole remembered, ”He (Lomax) called up the Panthers and said, “I’m here in this demonstration.” So the Panthers turned on the news and saw that we were occupying a federal building, which they thought was really nifty. They thought that anybody that challenged the federal government’s domain over their lives and were fighting for self-sufficiency and rights were cool people. And they had one guy in there and so they showed up.”[17]
Elizabeth: The Black Panther Party was also savvy in getting around the FBI and police lockdowns of the building. O’Toole recalled: “I happened to be in the lobby the first night that the Black Panthers brought us dinner. The FBI blocked them and told them to leave. The Panthers, being extremely sophisticated about how to handle police interactions, merely informed the FBI that they would bring the food, they would set it up, and they would leave. If the FBI prevented them from doing that they would go back to Oakland and bring more Black Panthers until the food got delivered to the protesters. The FI soon backed down.”[18] The Black Panther Party showed up every day after that to bring the protesters dinner, sometimes using food donated to the protestors by local grocery stores, charities, labor unions, and restaurants. Beyond meals, though, the Black Panther Party provided press coverage of the ongoing demonstration and offered solidarity. “Along with all fair and good-thinking people,” the party newspaper The Black Panther read on April 8, a few days after the demonstration started, “The Black Panther Party gives its full support to Section 504 of the 1973 Rehabilitation Act and calls for President Carter and HEW Secretary Califano to sign guidelinesfor its implementation as negotiated and agreed to on January 21 of this year. The issue here is human rights – rights of meaningful employment, of education, of basic human survival – of an oppressed minority, the disabled and handicapped. Further, we deplore the treatment accorded to the occupants of hte fourth floor and join with them in full solidarity.”[19]
Sarah: The demonstrators had other allies in the San Francisco community. A gay rights group named the Butterfly Brigade smuggled in walkie talkies so the protesters could better communicate. Ed Roberts, working for the state government, showed up in an official capacity to give the protests the air of authority, and paving the way for other government officials to publicly support the sit-in. Philip Burton, a congressman from California, demanded that the police allow food deliveries and also arranged for the installation of extra pay phones so the protestors had some way of communicating outside the building. By day 13, the mayor of San Francisco George Moscone declared the sit in “an emergency housing situation,” which allowed him to arrange for the delivery of air mattresses and portable showers. That also allowed the Department of Health to demand that the police and FBI allows health care providers access to the building – which in effect just allowed more people, both disabeld and nondisabeld, to join the sit-in and bolster their numbers. The regional director of HEW voiced his irritation to Moscone, saying: “We’re not running a hotel here!” Not all HEW employees were critical of the sit ins, though – one HEW employee told the demonstrators that if he overheard any plans for a police raid to sweep the protestors from the building, he would wear his distinctive snake pin upside down to send a silent message.[20]
Elizabeth: But mostly, HEW continued to shoot itself in the foot. On day 12 of the sit in, Congressman Burton arranged for a hearing to take place inside the occupied building, grilling HEW on their plans in regard to Section 504. A HEW representative declared that they had plans to make changes within the Section 504 regulations drawn up by their internal lawyers that would create – and I quote – “separate but equal” facilities for disabled folks, such as exempting hospitals from the requirement to have wheelchair ramps and establishing “special” schools for disabled children instead of making public schools accommodate children with special needs. This was an own goal if there ever was one. “We will not accept more segregation,” Judy Heumann shot back, “When you erect buildings that are not accessible to the handicapped, you enforce segregation. There will be more sit-ins until the government understands this.” Ed Roberts shared a similar sentiment: “Integration is the key word.”[21]
Sarah: Inside the HEW building, something else was happening. Living in the building was not easy, but the demonstrators were forging friendships. Corbett O’Toole remembered: “We were high! We were ecstatic. A lot of us who were disabled as kid had gone to crippled kids camp – we thought it was camp! We didn’t care. You know, we survived surgery! We survived hospitals! This was nothing! We had choices here. We could go to that inaccessible bathroom or that inaccessible bathroom. We could go down the halls by ourselves, we were with our friends, I mean, they were never going to us out of here!” I think her quote there is so powerful because she’s describing the creation of a community. The camps she was referring to there were ones like Camp Jened, the one featured in the Netflix documentary Crip Camp (which I can’t recommend highly enough), where disabled youth could spend part of their summer. These camps were vital to the later development of the disability rights movement because they allowed disabled people to spend time together in an entirely accessible environment, where they were not objects of pity or the subject of staring. O’Toole is saying that the sit in was like that – being with other disabled people, outside of the reach of medical authorities or nondisabled people trying to control their lives.
Elizabeth: Joe Shapiro described this as “a disability city, a mini-Woodstock.” It became a consciousness raising space, a community building space, and a space where people forged powerful relationships. People fell in love. Others gained lifelong friendships. They sat up late into the night making plans and planning statements. Activist Mary Jane Owen recalled one night when strategizing turned into a game. A woman said to the group, “I’m your fairy godmother. I can grant your wish. And what is your wish!” The group went around in a circle, sharing their wishes, some serious and some silly. One person said their wish was “for Califano to sign the regs.” Another said they wanted a hamburger. Then a young woman said, “I used to know what I would wish for. I wanted to be beautiful. I wanted to stop being a cripple. But now I know I am beautiful.” This was a powerful moment for Mary Jane Owen, who later recalled: “And that was a very, very powerful instance for me, what this wonderful young woman was saying. I know I’m beautiful now in spite of the fact that I’m disabled, in spite of the fact that I’m small or blind or what-have-you. I’m beautiful. But I think that that’s something that transpired in some way or another for everybody that was in the building.”[22]
Sarah: In the end, the sit-in lasted 25 days – the longest sit-in in a federal building to date. On April 25, Califano gave in and signed the regulations without making any of his proposed changes. Five days later, the protestors marched out of the federal building in San Francisco, wrapped in their sleeping bags and singing “We Shall Overcome.” At the same time, Califano signed another set of regulations, these ones pertaining to the Education of All Handicapped Children Act (now renamed the Individuals with Disabilities Education Act, or IDEA) which was signed into law in 1975 and also blocked by Califano. Between the two, disability rights in the United States were absolutely revolutionized.
Elizabeth: Under the IDEA, schools were required to provide the best possible public education to all disabled children as well as to nondisabled children. This is the law that requires public schools to provide evaluations of children and develop individual education plans (or IEPs) to provide services such as counseling, speech therapy, occupational therapy, and extra educational supports. Schools were also required to provide “the least restrictive environment” for learning, meaning they might need to find ways to educate children with disabilities alongside nondisabled students as much as possible rather than putting them in separate spaces or buildings. Under Section 504, schools are required to provide an education free of discrimination – if a child has a “504,” it might mean that they have a legal agreement with the school that they will have access to accommodation materials (such as a calculator), extra time on tests, or medical supports and devices in the school. Section 504 also required all buildings, organizations, and entities that received federal funds to be accessible to disabled individuals. A library, for instance, might need to provide a wheelchair ramp; a federal office building might need to install larger stalls and grab bars in bathrooms.
Sarah: There was much work to be done. Many states and municipalities complained loudly about the unfairness of the costs that 504 compliance would pose. Many of them, though, were wrong, or worse, lied and exaggerated costs to exploit the issue for political gain. The staet of North Carolina, for instance, whined that compliance would cost upwards of $15 billion dollars because it would be so expensive to make the University of North Carolina system accessible. But when Ron Mace, an expert in accessible architecture, actually looked at the costs, they only amounted to about $15 million because many of the changes were reasonable and cheap – like providing telephone headsets to disabled employees or arranging to have mobility impaired students take classes on the first floor so they didn’t need to retrofit old buildings with elevators.[23] But while there was still fight left, disabled people were ready to take it on – through the 504 sit-ins, a disability rights movement was forged. In the next decade, they would expand their vision, turning their attention the development of a bill that, like the Civil Rights Act of 1964, would protect the civil rights of all disabled people. The bill, signed into law in 1990, was the Americans with Disabilities Act.
Disabled people in the late 20th century worked incredibly hard to demand the civil rights the United States government should have offered them all along, but now, Section 504 and the IDEA are under threat with the pending dissolution of the Department of Education. The Department of Education has, for decades, been tasked with enforcing the law when it comes to disabled children and their rights to an education. If it is dissolved, it’s not clear how, exactly, those rights will be protected, or who will do the protecting. Many of you, like me, have kids or niblings or friends who have benefited directly from 504s and IEPs. Please call your representatives and ask them to protect the rights that these activists, like Judy Heumann and Ed Roberts, fought so hard for fifty years ago.
Bibliography
Reagan, Leslie. Dangerous Pregnancies: Mothers, Disabilities, and Abortion in Modern America.
University of California Press, 2010.
Pelka, Fred. What We Have Done: An Oral History of the Disability Rights Movement. University of Massachusetts Press, 2012.
Shapiro, Joseph P. No Pity: People with Disabilities Forging a New Civil Rights Movement. Three Rivers Press, 1994.
Heumann, Judith with Kristi Joiner, Being Heumann: An Unrepentant Memoir of a Disability Rights Activist. Beacon Press, 2020.
Schalk, Sami. Black Disability Politics. Duke University Press, 2022.
Notes
[1] Leslie Reagan, Dangerous Pregnancies: Mothers, Disabilities, and Abortion in Modern America (University of California Press, 2010), 56.
[2] Reagan, Dangerous Pregnancies, 56.
[3] Fred Pelka, What We Have Done: An Oral History of the Disability Rights Movement (University of Massachusetts Press, 2012), 150.
[4] Judith Heumann with Kristi Joiner, Being Heumann: An Unrepentant Memoir of a Disability Rights Activist (Beacon Press, 2020), 11.
[5] Heumann, Being Heumann, 14.
[6] Heumann, Being Heumann, 24.
[7] Pelka, What We Have Done, 184
[8] Pelka, What We Have Done, 193
[9] Pelka, What We Have Done,42.
[10] Joseph P. Shapiro, No Pity: People with Disabilities Forging a New Civil Rights Movement (Three Rivers Press, 1994), 42.
[11] Shapiro, No Pity, 43.
[12] Shapiro, No Pity, 51.
[13] Pelka, What We Have Done, 264.
[14] Pelka, What We Have Done, 272
[15] Pelka, What We Have Done, 273.
[16] Sami Schalk, Black Disability Politics (Duke University Press, 2022), 26.
[17] Pelka, What We Have Done, 273; Schalk, Black Disability Politics, 32
[18] Schalk, Black Disability Politics, 32.
[19] Schalk, Black Disability Politics, 30.
[20] Shapiro, No Pity, 68.
[21] Shapiro, No Pity, 68.
[22] Shapiro, No Pity, 69; Pelka, What We Have Done, 278.
[23] Shapiro, No Pity, 72.
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