SYMHC Classics: Ed Roberts and the Independent Living Movement

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Speaker 1: Happy Saturday. Today is the International Day of Persons with Disabilities, which is an observance that the United Nations first established in so today's episode draws from disability history. It's on Ed Roberts and the Independent Living movement that is a movement focused on collective self advocacy by and four disabled people with a goal of getting people to support they needed to live, work, and go to school within the greater community rather than segregated away from it. Some of the other subjects that are touched on in this episode include polio and the five oh four sit Ends that took place in nineteen seventy seven. Previous Hosts episode on Polio was a Saturday classic recently in September, and the five oh four sit Ends were part of an installment of six Impossible episodes that came out on February of This episode originally came out on January. Enjoy Welcome to Stuff You Missed in History Class, a production of I Heart Radio. Hello, and Welcome to the podcast. I'm Tracy B. Wilson and I'm Holly Fry. Today's podcast is a listener suggestion and I'm pretty sure it was a comment somebody left us on our Facebook page. I really thought I had written down the name of the person who sent it in. Apparently I didn't, And I feel really bad about that because it was such a great suggestion that was definitely from that one specific person. It's not a suggestion I think we've gotten other times. Besides that, by absolute total coincidence. It was also a Google doodle literally yesterday. In terms of when we are recording this podcast, uh, it is about disability rights activist ed Roberts, who was known as the father of the independent Living movement. That's a movement for and by people with disabilities which combines advocacy and resources and education all towards the goal of living independently and fully integrated with abled society. And with one quick heads up today there's a brief part of today's episode while we are discussing roberts eighteen month hospitalization with polio, that might be triggering for people with depression or with eating disorders, and if that applies to you when we get to that part of the story, you might want to skip ahead about thirty seconds, starting with our mention of that eighteen month hospital stay. Edward Verne Roberts was born on January twenty, nineteen thirty nine, in San Mateo, California, to Zona and Verne Roberts and at the age of fourteen, he contracted polio, which is a viral disease that primarily affects children under the age of five. In addition to symptoms such as fever, headache, and vomiting, polio also attacks the nervous system and causes paralysis. Because of its typically young patients and the way the disease progresses, it has also been known by the name infantile paralysis. Polio still exists today. There's no cure for it, but it can be prevented by a vaccine. The first polio vaccines were introduced in nineteen fifty five, which was about two years after Roberts contracted the disease, and if you're interested, there is a whole podcast on the history of polio and its vaccines in our archive from past hosts Sarah and Babuina. In many cases of polio, the diseases progression affects a person's ability to breathe. Until this stage of the disease was usually fatal, but that year the first version of the iron lung was introduced. The iron lung, which is the more colloquial name for a tank respirator or a negative pressure respirator, could keep patients alive during this acute stage of the disease. An iron lung looks like a big metal cylinder. It's big enough for a person's whole body to fit into from the neck down. Typically, there's a bed inside that can be slid in and out of the cylinder, allowing the patient to be removed and returned when necessary. Windows and portholes on the sides of the cylinder let caregivers touch the person who's inside, adjust their bedding, generally care for them while they are still inside of the iron lung and The iron lung works by alternately lowering and raising pressure inside the chamber. When the pressure is lowered, air is drawn into the lungs through the patient's nose and mouth, and when the pressure is raised that air is pushed out, which both forces the patient to exhale and allows them to speak during the exhaled breath, so for a person using an iron lung, speech is usually timed with the machine cycle of breathing. Today, iron lungs have been almost completely replaced by other respiration technologies. As of fourteen, there were only about ten of them still in use in the world, and those were mostly with people who had survived polio in childhood very long ago. But during Robert's early life they were the standard of care and polio patients who couldn't breathe on their own. In many patients, the muscle weakness and paralysis associated with polio were temporary, as was the need for an iron lung, but in about one and two hundred patients, the paralytic effects of polio are permanent. This was the case for Ed Roberts. After contracting polio in nineteen fifty three. He was hospitalized for about eighteen months. While in the hospital, he was very ill, with a very high fever and near total paralysis. His mother asked his doctor whether he would live, and the doctor's answer, which was given where Ed could hear him, was that she should hope that he didn't because he would be, in the doctor's words, no more than a vegetable. And for a while Roberts decided he didn't want to live. He was being continually looked after by nurses and the only thing in his life that he had control over was whether to eat and so he stopped. His weight dropped to about fifty pounds, down from approximately a hundred and twenty. But after the last nurse left, the medical staff had basically decided that the end was near for him. As he would describe later in his life, he decided that he did want to live. He started eating again. He was eventually able to return home. His family had moved into a different house when it had fewer stairs and could accommodate this eight hundred pound iron lung, and from there he returned to school, calling into classes at Burlingame High by phone. Prior to contracting polio, Roberts had wanted to be a professional baseball player, and he hadn't been particularly interested in schoolwork, but that changed after his illness. He was about two years behind because of his lengthy hospital stay, but he dedicated himself to his schoolwork and he became an excellent student. At this point, people with apparent disabilities weren't really seen all that often in American society. Many were placed in institutions or were cared for at home, but never really got out of the house. But as Ed's senior year of high school approached, his mother and his social worker insisted that he not spent his whole life in his room. They arranged for him to attend some of his senior year classes, at least some of them in person in a wheelchair. Roberts had learned a method of breathing called glossop angel breathing, also known as frog breathing, and this is sort of like swallowing air, so basically using the muscles of his mouth and throat to force air into his lungs. While he still needed the iron lung for much of the time, especially while he was asleep, he was able to live outside of it for periods of time. He was worried about being stared at, and people did stare at him, but he quickly realized that the people staring weren't the ones who were really uncomfortable with with his being there. People who were really uncomfortable avoided looking at him, so he decided that the ones who were staring at him were the people who were interested and curious. So he decided to approach it as though they were staring at him because he was a famous person and not because he was disabled. And this approach to other people's reactions to him really set the stage for the man that Edward Roberts would become throughout his life. The people who knew and worked with him remarked on how charismatic and ambitious he was, a very funny, very determined person, an adventurous man who loved good food and good drinks and good company and was absolutely unafraid to demand accessibility and equality and to do the things that people told him would be impossible. Uh through the wonderful work of oral historians and documentary filmmakers, there is a lot of footage and oral history from ed Roberts, and he is a character like he Everyone over and over marks on just having a big, big personality and being very gregarious and very funny. And so we will link to a lot of those in our shore notes for the people who are interested and learning more, but for now. One of Ed's first experiences with advocacy would play out while he was actually still in high school, and we will talk about it after a quick sponsor break. Even though ed Roberts had good grades in high school, when it was time for him to graduate, the school's principle refused to let him. The state required credits and physical education and driver's d. He had neither because neither class was accessible to him. His mother's zona, who had experienced in advocacy through her work as a labor organizer, first took it up with the school. The vice principle came by their house and suggested that since Ed hadn't done the required coursework, his diploma would be a quote CHIE one and he should stay an extra year to make up for it. And the family, of course declined this offer. It was not really reasonable to say, because he didn't take PE and drivers that you need a whole extra year of high school zone and then took the matter to the school board, which ultimately allowed physical rehabilitation to account for his PE credits, and they waived the requirement for Driver's ED, which, uh, if you've ever done any kind of of physical rehab it's harder than most PE classes, Like he should have gotten extra credit for that. Uh, so his high school diploma received. Roberts attended his local community college, the College of San Mateo, from nineteen fifty nine to nineteen sixty two, and he at first planned to become a technical writer. He was a good writer and he knew how to dictate documents, so it seemed like a good way to be able to earn a living, but after taking a class in government, he became very interested in political science. Roberts had originally planned to transfer from the College of San Mateo to u c l A, and that was a campus that was already wheelchair accessible, in part because of a program for World War Two veterans that was already in place at the school, but Ed's advisor at College of San Mateo, Dean Worth, recommended the University of California at Berkeley for the strength of its political science program. Ed's brother Ron, was going to UC Berkeley, and Ed knew from his visits there that the campus was not particularly accessible, but even though Berkeley's lack of accessibility made it a list practical choice, it was definitely the stronger option for him in terms of academics. Ed went to the California Department of Rehabilitation for financial help with school, something it had made available to other disabled students. They gave him a personality test and later told him that it scored him as being very aggressive, something that Roberts suggested, given his disability, should be seen as a positive and not a negative, but the counselor assigned to him at the Department of Rehabilitation denied his request or financial aid on the grounds that he was not employable, and then when you See Berkeley learned about his disability, it tried to resend his acceptance to the university. But similarly to how he'd had his mother's support and getting his high school to allow him to graduate, here, he had the support of the staff at the College of San Mateo, including gene Worth, as well as the school's president and Dean of students uh and they backed his efforts to enroll at you See Berkeley. They pointed to his strong academic record as evidence that he had the right to continue his education at the school with the best academic program that he wanted to study, and that he shouldn't be forced to go elsewhere just to be on a campus that was already accessible. You See Berkeley, arguing that there was nowhere on campus to how someone who used an iron lung, and worried about Robert's medical needs and the risk that something could happen to him while he was at the school, again said no. This time, Roberts and his advocates went to the newspaper You See Berkeley eventually relented Robert's plan to work around you See Berkeley's lack of wheelchair accessibility by using a wheelchair when he could, but being carried into places like classroom buildings or cafeterias that had stairs. But there was still the real issue of having nowhere in student housing that could accommodate an eight hundred pound iron lung, and eventually the decision was made to house him in a wing of you See Berkeley's Cowl Hospital, and he moved in in nineteen sixty two. For that first year, it was a really lonely existence. Roberts was the only student being housed full time in the hospital, and his primary company was an attendant that was paid for by state funds from a program to provide services for people with disabilities. Sometimes his friends or his brother Ron helped out as well, but at night he was basically being treated as a patient and not a student. At the same time, though in typical college fashion, he had a lot more freedom and independence than he had had at home. He could breathe on his own outside of the iron lung long enough to go to class, go have a drink, and even to go on dates. It was that last one that prompted Roberts to try to find a way to make a power wheelchair, which was at this point a relatively new technology work for him. Today there are a lot more options for controlling power wheelchairs, including head and mouth controls, but at the time, hand controls were really the only one in existence. For this reason, Roberts threehab counselors had told him that he wouldn't ever be able to use one. He only had the use of two fingers on his left hand, and not in a way that could operate those controls. But Roberts, highly motivated by a desire to be alone with his girlfriend, figured out that with the controls simply turned around, he could operate the power wheelchair by pulling with his two fingers rather than pushing on them as they were designed to be used. In nine Roberts was no longer the only student living in Cowell hospit Battle. He was joined by John Hessler, who had broken his neck in a diving accident, and soon Cowel Hospital was home to other students with similar disabilities as well. By nineteen sixty seven, at which point Roberts had finished a bachelor's and the Masters, and had moved on to PhD work in political science. There were about twelve students living in Cowel Hospital who called themselves the Rolling Quads. They formed a support network and advocacy group, coming up with ideas and strategies for better accessibility both on and off campus. You see, Berkeley was a hotbed of political activism, including protests for women's rights, free speech, and against the Vietnam War. Berkeley is one of the campuses that shows up again and again in coverage about student protests, some of them uh quite radical, and this was true for the Rolling Quads as well. When the program administrators tried to cut funding for students who weren't completing their coursework fast and the Rolling Quads petitioned and then went to the media on the grounds that the same standards were not being applied to non disabled students. Basically, the school was in a hurry for the students with disabilities to finish faster because it was more expensive to house them, but that same measurement was not being applied to other students who were in more typical student housing. When the city started refurbishing a shopping center near the campus, eight of the Rolling Quads went to a city council meeting to demand that curb cuts be included in the budget. They were with the city devoting fifty thousand dollars a year to making accessibility improvements to city streets. The curb cut is just that little slope that goes from the curb level to the street level, which today is completely standard, was not standard at that point, and it meant that, you know, if if you were using a wheelchair, it was really hard for you to get from like across the street. And when they went to the city council, one of the arguments that they got back, well, we don't need those, We never see any people out in wheelchairs. And they were like, well, yeah, because it is because safe, we can't use the sidewalks. It's such like a jacked up logic. I know. Uh. As all of this was going on, Robert's former counselor, back from the College of San Mateo, Jean Worth, had been working on a college readiness program for minority students. And this was a program that was working toward reducing high school dropout rates and preparing minority students for college. Through peer counseling, students who were at risk for dropping out were paired with other students who were their mentors who could help them remove whatever obstacles were in the way and keeping them from finishing school. Based on the work that the Rolling Quads had been doing UH and how much they had been able to advocate for themselves and support one another, Roberts thought the same model could be used for students with disabilities. So Roberts flew to Washington to help Worth write a plan that included disability among the minority students the program sought to help, and he presented a grant proposal to the Department of Health, Education, and Welfare to implement a peer support program at UC Berkeley. The department approved eighty one thousand dollars in funding. With this grant, Roberts and the Rolling Quads started the Physically Disabled Students Program or PDSP. The p DSP was run by and for students with disabilities, and it sought to provide attendance, wheelchair repair, and resources for accessible housing, including the relocation out of Cowell Hospital into actual accessible housing rather than a hospital ward. Even though it was only meant to be a student program, it was so successful that people in the greater community began to rely on it really quickly. Something that was technically against the rules, but the p DSP was just not really willing to turn people away. It was grounded in the self advocacy and the folk us on self determination that became the hallmarks of the independent living movement. Much of the disability advocacy before this point had been by and on behalf of caregivers, not of people with disabilities themselves. It was often paternalistic, and it approached people with disabilities as a population to be pitied and looked after, not as autonomous human beings capable of making their own decisions. Although there are still divisions between self advocacy and caregiver advocacy today, the independent living movement changed that direction entirely. You will definitely see huge divisions especially among like uh parents of children with disabilities and then those adults who have grown up and are able to advocate for themselves. A lot of times very different needs and opinions. But before this movement really started, the only voice was the more paternalistic I need to look after you. Here's how I'm going to fix your problem kind of voice. Soon, the p DSPs work made a more official move off of campus, rather than just seeing to the needs of community of the community, even though it was really a student program, and we will talk about that after another quick sponsor break. As more students with more types of disabilities came to Berkeley's Physically Disabled Students Program for help, the p DSP broadened its focus from primarily wheelchair users to include, for example, providing rail readers for blind students. And as we noted before the break, the p DSP didn't want to turn away anyone who needed help, regardless of whether they actually went to Berkeley or not, so almost immediately the p DSP staff of nine full and part time counselors was just completely overwhelmed. The result was that in Robert and the Physically Disabled Students Program launched the Center for Independent Living. It followed the same model as the PDSP, an organization run by and for people with disabilities, incorporating a broad range of disabilities and working towards the goal of completely integrating people with disabilities into the greater community. The by laws stipulated that at least fifty one of the staff and board had to be people with disabilities. While the p DSP had been launched by federal grant money, the Center for Independent Living was funded by whatever money its founders could scrape together, including donations, occasional grant money, and ten percent of the pot at some of the founders periodic poker games. And after a brief time away from Berkeley teaching community organizing at an all black school, Roberts returned to the Center for Independent Living in nineteen seventy four. As its director, he began more explicitly approaching his disability rights advocacy in terms of civil rights. Other centers for Independent Living soon opened in other states, following the same model for self advocacy, self determination, integration, and quality of life. By the nineteen eighties, there were more than three hundred of these centers around the United States. Roberts stayed and his in his role at the Center for Independent Living for about eighteen months until nineteen seventy five, when California Governor Jerry Brown came for a tour. After seeing the work that Roberts was doing, he offered him a new position, director of the state's Department of Rehabilitation. This was the same department that had told Roberts he was unemployable when he was looking for financial help to go to UC Berkeley and Roberts would work as the director of the state Department of Rehabilitation for the next nine years. During that time, he would radically shift the department's direction and the way that it offered services. The department's federal funding was based on how many people it was able to place into jobs, so for years it had focused most of its attention on the people whose disabilities were easiest to accommodate in a workplace setting, and that was why it had written Roberts off as unemployable. Instead, Roberts added day to day support for a person's independent quality of life to the Department of Rehabilitation's roster of duties, as well as advocacy for non discrimination policies other things that were basically meant to take a broader, more holistic scope to what the department was doing. The department did see a fair amount of turnover as employees resisted the shift in direction and in some cases were let go because they did not agree with the shift in direction, and the debate on how much to continue to focus on more easy to place jobs for the sake of federal funding continued, and really in a lot of places continued still today and in the midst of all of this UH, in those same years, Robert got married and he and his wife Catherine also had a son named Lee. Also during these same year's very busy collection of years was a lengthy governmental back and forth related to what's known as Section five oh four. This is a non discrimination clause and the Rehabilitation Act of nineteen seventy three UH. Section five oh four reads quote, no otherwise qualified handicapped individual in the United States shall, solely on the basis of his handicap, be excluded from the participation, being denied the benefits of, or be subjected to discrimination under any program or activity receiving federal financial assistance. Section five oh four was added to the Rehabilitation Act almost unnoticed during the Nixon administration, and the fight over it lasted into the administration of Jimmy Carter, largely due to the financial costs involved with making buildings and programs accessible and fears about its scope being too broad. A four year delay in writing regulations to actually implement section five oh four ultimately led to an enormous takeover of the Regional Health, Education and Welfare Building in San Francisco in nineteen seventy seven, one or and ized by Judy Hyman, who had been paralyzed after contracting polio as a baby. Roberts made several visits to this sit in, which was ultimately successful, prompting Carter's Secretary of Health, Education, and Welfare to finally sign off on the necessary regulations also in nineteen seventy seven. Section five oh four would eventually lead into the Americans with Disabilities Act in nine ed Roberts continued to be a strident advocate for disability rights and independent living for the rest of his life, and this included travel all over the world, which itself involved advocating for accessible airports and airplanes. He helped found the World Institute on Disability in nineteen eighty three, and he was awarded a MacArthur Foundation grant in nineteen eighty four. He served on the board of directors of numerous disability rights organizations while also serving as the president of the World Institute of Disability until until his death from cardiac arrest on March fourteenth of nineteen five at the age of fifty six. His wheelchair is now part of the Smithsonian Collection. He was inducted into the California Hall of Fame in eleven and the United States House of Representatives declared at January at Roberts to day. Also January is the day that he was a Google doodle. Coincidentally, as I was like, that was the day I finished writing this podcast. Good accidental timing, Tracy Well, and as I was doing the research, I was like, oh, his birthday's coming up, and then there was the Google doodle today. The nonprofit Ed Roberts Campus, a fully accessible campus and events based in Berkeley, is also named for him. That is had Roberts. He really did so much to shift the way that people thought about disability and to shift the way that people regarded people with disabilities. Uh, not at all to suggest that everything is perfect now. I mean basically, everybody I know who is living with a disability, especially if it is not something that is easily accommodated, faces a basically continual uphill battle to get services and basic uh equipment and care. But going from nothing two to that, like it was a huge, a huge deal. So I think we definitely owe a lot to Ed Roberts. Heany so much for joining us on this Saturday. Since this episode is out of the archive. If you heard an email address or a Facebook U r L or something similar over the course of the show that could be obsolete now. Our current email address is History podcast at i heart radio dot com. Our old health stuff works email address no longer works, and you can find us all over social media at missed in History. And you can subscribe to our show on Apple podcasts, Google podcasts, the I heart Radio app, and wherever else you listen to podcasts. Stuff you Missed in History Class is a production of I heart Radio. For more podcasts from I heart Radio, visit the I heart Radio app, Apple Podcasts, or wherever you listen to your favorite shows. H