The First Battle For Disability Rights

Mitch gives an update on what he has been up to, which includes narrating his first audiobook called An Independent Man: Ed Roberts & The Fight For Disability Rights by Scot Dan Forth.  Included in the podcast is the first chapter of the book that tells the incredible first battle for disability rights at U.C. Berkeley in the late 1960s.

Transcript

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It's Storytime with Mitch Jezerich. Today, an excerpt from a new audiobook, a biography on the disability rights icon at Roberts, narrated by me. What the hell is going on with Mitch Jeserich since he left Pacifica Radio anyways? Does he just watch birds and follow baseball box scores all day? Does he just wander around, tricking himself into seeing something deep when only looking at the mundane? Or does he just torment himself with nonstop self-analysis that only leads to self deprecating jokes? Well, yes, to all of that. But not just that. And before I get to beyond that, first a word in the defense of the indolent. Yes, such a lifestyle leading to penary presents challenges. But if you can pull it off, do it. Why else have a civilization with all these technological wonders just to work harder? Doing so means making the rich richer. The way we fight back is working less and reclaiming our time. It's the only thing we truly have. Besides, it's easier. So I say loafers of the world unite. But I have been working, somewhat, for the past few months narrating an audiobook. I thought being behind a mic for years on the radio, and even having read a number of books aloud on air, this would be a natural and easy transition. But I was wrong. I took a few voice acting narration classes and even had a coach for a short time, and each and every teacher I had grew so frustrated with me. I was the problem child in class. I mean, I behaved. I am fifty four years old, but I could see in their exasperated expression whenever it was my turn to read. They just couldn't break me out of my speaking habits I formed after twenty five years on the radio, or the deep speaking style I inherited from my truck driving and bus driving parents. I'm from the backwaters of the Bay Area Delta, and I sound like it. That's the story of language, though, and there's nothing to be ashamed of. Language first comes from the home. The book I narrated is called An Independent Man, Ed Roberts and the Fight for Disability Rights. It's the first biography about a disability rights founder. The movement for disability rights never gets the credit it deserves for how it has utterly transformed society. It has assured that everyone, despite physical, emotional, or cognitive limitations, has access to civil life and can participate in it. In the story of democracy, it's huge, and it's made everything easier for everyone anyways. The book also illustrates an important lesson how a movement can capture the state agencies that deal with the people the movement represents. Ed Roberts rose to lead the California Department of Rehabilitation and in turn directed millions of dollars towards disability rights. But every time I did a show about the movement on my radio program, I saw listener numbers drop precipitously. The disability rights movement just didn't have the cool of the civil rights movement or the joy of the gay and lesbian rights movement. Nobody wants to be disabled. The recent documentary film Cripcamp has started to change that perception. Scott Danforth, an independent man, continues in that projection, showing how it was a bunch of counterculture students in wheelchairs who won the first battle for disability rights at UC Berkeley at the height of the hippie revolution. It's a story that's in the excerpt from the book that I have provided here for you. When I was a young man working for a disability rights nonprofit, I didn't care about Ed Roberts' story. I never learned much about him in subsequent years either. I did know about another founder, Judy Human. I fell in love with Judy after seeing her in the documentary film The Power of five oh four. Then I met her, and she was so loving to me on that day. She was much older than I, and maybe that's why she was so warm to me when I met her. But I did love her. Now that she's gone, I still love her. Every woman I've loved has had a little Judy Human, and Natalie Merchant, too, in them. I'm sorry, where were we? Yes, Ed Roberts. I love him now too after learning this story. So with this bias that even disabled people have towards the disabled, never mind from the non disabled, I wasn't surprised when Scott Danforth told me the publisher of the book wasn't going to put the money to turn his book on Ed Roberts into an audiobook. Not surprising, but disappointing, considering audiobooks probably have their genesis as an assistive device for blind folks to get books. In college, I got paid to read on tape textbooks for blind students. It was hard because I had to read chemistry books and that was the furthest possible thing on my mind. I wanted to party. So I told Scott I would narrate the book for free, and I did. I'll get a little royalties, but probably not much. I had some time on my hands, as you know, and thought I could work on my narration skills through it. I didn't want it to sound like my first audiobook, but that is exactly what it is, and inevitably what it sounds like. The story of Ed Roberts touched me. As a disabled person myself, so many of my experiences, especially as a kid, mirrored his own. His mother, Zona Roberts, had to fight school bureaucracies every day just to get Ed an education. My mom, who had me at just seventeen years of age, had to fight to get me into standard public schools, rather than in special education. She was such a young woman then that my older self now still can't quite fathom what that took. Like Ed and many disabled children, I was the only disabled kid around in school or at home. I only spent substantial periods of time with other disabled kids during my long stays in hospitals, which were formative. Just like Ed. Just like most disabled kids. While fighting for Ed Roberts' rights, Zona Roberts was also fighting for the rights of women. Ed's early political education came from going around town with his mom as she handed out flyers in support of Helen Gehagen Douglas's run for Senate in nineteen fifty. She lost that race to Richard Nixon, who accused Douglas of communist sympathies. He said she was pink right down to her underwear. Zona Roberts wasn't interested in living a traditional role reserved for women, and she taught Ed he didn't have to live according to society's expectations either. I feel there's an argument to be made that the women's rights movement served as a midwife to the birth of the fight for disability rights. Scott Danforth in his book shows Zona's role in Ed's formation very clearly. He also chronicles the parallel and intersecting paths of the Black Power, the Third World Liberation and LBGT movements to that of disability rights. There are many names in this book that are gone now, but not all of them, that I once knew as a young man working in the movement. Like Helzucas. Helzucas was a fixture on the streets of Berkeley, Oakland, and San Francisco. Everyone recognized this man in a motorized wheelchair, with his spastic limbs strapped to his body, moving the joystick of his chair with a stick connected to a helmet on his head, the same stick that he pointed to words on his speech board just above his lap to communicate. Again, most recognized him by sight for he was always around, but never knew he was a fucking genius. He, more than anyone, forged the Bay Area into a physically accessible place for the disabled. He designed the elevator system for Bart, making the public rail system the first fully accessible system in the country. He was the most disabled of all of us, and he led the way in making sure all of us could follow. I have included here in video and audio my reading of the first chapter of An Independent Man, Ed Roberts, and the Fight for Disability Rights. The physical book is available almost everywhere. The audiobook can be found on Audible. Chapter one Fight We're organized and we're taking over. Ed Roberts shouted at doctor Henry Breen. A dozen long haired University of California Berkeley students in electric wheelchairs stuffed into one hospital room, nodded in angry agreement. Two members of the group had been kicked out of campus housing for questionable reasons. Ed and his friends were pissed off, and they were ready to fight. Roberts was the elder statesman of the zealous bunch. Entering the university in nineteen sixty two as an undergraduate, he was the first disabled student living on campus, housed in Cow Hospital, the campus infirmary. By october nineteen sixty nine, he was a doctoral student in political science, serving as the knowledgeable leader of this would be band of radicals. In seven years, he had developed numerous influential contacts on campus and in the community. He knew where the strings were located and was pretty good at pulling them. Breen was the medical director who oversaw the growth of the third floor of Cal into a small dormitory for students with physical disabilities. Nothing in Breen's medical training or extensive experience working with polio patients prepared him for mutiny. No one really expected the patients to rise up and take over the hospital. Deep inside, Breen must have smiled. He was the caring physician who took a chance on Ed when university administrators were not convinced that a neck to toe paralyzed man could attend college. A year later, he arranged for the formidable John Hessler, the sharp collaborator who became Ed's buddy to join him in Cow. Although Breen disagreed with the California Department of Rehabilitation's decision to expel the two students, the physician withheld his formal approval of the student's protest. While he likely felt proud of his rabble rousing charges, he was worried that an insurrection might jeopardize the Cow program he had carefully built. Breen and Ed Roberts both knew that the real target of the student's IR was State Rehab, the public agency that funded and oversaw the CAW program. A year earlier, bayoued by a sudden influx of federal grant dollars, State Rehab had more than doubled the number of disabled students in the campus residence. In fall quarter nineteen sixty nine, the psychedelic echoes of Jefferson Airplane and the pungent scent of marijuana filled the tile hallways of the medical ward. The disabled students and their youthful personal attendants easily smuggled alcohol past the frustrated nurseminders. The third floor of Cal Hospital was a party scene, rivalrying the most rackus fraternity. Worried state rehab bureaucrats assigned Lucille Withington, a hard nose, no nonsense counselor, to clean up what appeared to be a rowdy mess. She instituted new academic requirements above the university standards. She scrutinized the students' grades and class attendance. She increased the number of courses they had to take per academic quarter. The Cal residents saw Withington as a harsh and demeaning taskmaster. In their eyes, she was the embodiment of medical social control, tying them down at a time when they were busting loose, creating lives of independence and self mastery. Many had wasted their adolescent years in hospitals. This was their lucky break, their big chance to be free, to be Berkeley students at the height of the hippie revolution. Then Whittington dropped the hammer. On Tuesday, september sixteenth, nineteen sixty nine, she kicked undergraduates Don Lawrence and Larry Biskamp out of Cal. She claimed they were not making sufficient academic progress. On a campus where edgy nonconformity was the norm, Ed and his friends believed Withington was making an example of the two most loudly divergent students. She picked these two most active spokesmen for our group, Ed told the San Francisco Chronicle. He depicted the two as average young people in Berkeley, persecuted for their bohemian lifestyle. We refused to cut our hair for her or use underarmed deodorants. Sometimes our rooms were a little messy. We were very normal cow students, and that upset her greatly. Lawrence was a gay man whose sexuality and mind blowing wardrobe were viewed as disruptive by hospital and rehabilitation staff members. His free flowing approach to academic study was more zen than strategic careerism. Biskamp was a constant critical thorn in Withington's side. He loudly agitated among the disabled students, calling them to act in defiant solidarity against the pushy counselor. Both ejected students were beloved members of the crew, but Lawrence's expulsion struck a particularly sour note among the personal attendants who provided personal care to the physically disabled students. Numerous personal attendants were gay. The largely concealed alternative lifestyle enclave of third floor cow was a tolerant space for gays and lesbians. The students and their attendants tended to view homosexuality and disability as analogous, two groups widely misunderstood and scorned. Ed quickly rallied the disabled students to fight back. Dinner time rap sessions became late night political strategy meetings. Tipping their hats to the rebellious image of the Rolling Stones, the group named themselves the Rolling Quads. Ed was their leader. They were proud, united, and mad. Eleanor Smith, the ward nurse who assisted the students with hygiene and medical needs, found herself caught in the crossfire. A non disabled man named Mike Fuss worked as her assistant. The two argued bitterly. Fuss was a white man who had been active in the African American civil rights movement. When the Vandekamp restaurants of the San Fernando Valley refused to hire black workers, Buss organized demonstrations. He was one of many Berkeley New Left activists who trained originally in the ideology and nonviolent protest tactics of the civil rights movement. With his keen political eye, Bus viewed the rolling quads as a rising class of political advocates seeking the right to control their own lives. Smith wanted them to be compliant patients and good students. Upset by the students' radicalization, the nurse abruptly resigned. Ed plotted strategy. Returning Lawrence and Biskamp to Cal was the immediate goal. But he also had a longer game in mind. If they could win the fight to save their two friends, the victory could jumpstart a larger movement. They would replace the common idea of a disabled person as incapable and requiring supervision with the emancipatory notion that disabled people were valued, competent citizens who could direct their own affairs. In common thinking, disability had nothing to do with politics. Even in nineteen sixty nine Berkeley, which was at the heart of the radical new left and youth counterculture, few observers of the conflict between the disabled student and state rehab imagined that disability could be seen as a civil rights issue. The student residents of third floor cow were young people whose bodies had simply failed them. Many were paralyzed by the poliovirus outbreaks of the nineteen forties. Others had severe spinal injuries from car crashes and diving accidents. What they needed was good medical care and effective rehabilitation, not some half baked protest movement. What they needed to do, in traditional terms, was politely take their medicine and follow doctors' orders. In Ed's outrageous imagination, this time, the so called cripples didn't accept their fate with a sweet smile that comforted the dominant non disabled community. The days of being grateful for charity crumb attitudes were over. He envisioned people with a variety of disabilities coming together to demand access to the American dream. While Ed's head was undoubtedly in the clouds, his actions were grounded in the realities of his own life. He had learned the practical lessons of gritty street fighting from his mother, Zona. Whenever an authority figure calmly pushed her son aside, the small but formidable woman fought back. She was an unlikely combatant, a mild, almost conciliatory person who felt deeply uncomfortable with conflict and confrontation. But she couldn't stand seeing otherwise respectable officials mistreat her son. She took on the school district leaders who refused to allow her son to graduate from high school. She battled the state rehabilitation system that declared Ed a person without useful potential. She clashed forcefully with university administrators who simply didn't care. Zona taught Ed that living well with a disability required fighting the people that held you down. Teamed up with his rolling quad's pals for the first time, Ed wasn't dueling for his own life and future. He was part of an alliance of disabled people united for a shared cause. The real enemy wasn't their sick or weak bodies, but the stigmatizing attitudes and societal barriers that kept them out of the game. The political science student had figured out that nothing was more political than disability. The Rolling Quads met with Rod Carter, Lucille Withington's supervisor. They issued two simple demands reinstate Biscamp and Lawrence immediately, replace Withington with a more amenable counselor who would give the disabled students greater control over their campus housing. The state rehab strategy was to divide the disabled students. They declared that disability wasn't a unifying characteristic like race or gender. It was an individual affliction to be treated with professional interventions targeted to a patient specific condition. Carter and Withington said they only had a problem with the two rule breakers. Their disciplinary actions didn't involve the rest of the students. Just let the professionals do their work and go about your business. The students remained united. They flooded Carter with letters that clearly communicated that they stood in solidarity with their friends Lawrence and Biskamp. Negotiations with Rod Carter hit a dead end. He backed Withington, and she was not going to budge. The Rolling Quads did what outraged Cal's students in nineteen sixty nine did. They scheduled a public protest action. This is where Ed's skills shined. He believed that if they took their case to the press and the politicians, they would win in the court of public opinion. Ed phoned reporters at newspapers in Berkeley and San Francisco, inviting them to the demonstration. He called state senators and assembly members, including mental health advocate Nick Petris. He lobbied them to put pressure on the Department of Rehabilitation. He arranged for journalists to interview him inside his iron lung, the enormous steel contraption that pumped air into his lungs. Nothing moved the pity filled uninitiated like sitting down next to the wheezy machine, with Ed's grinning face poking out one end. What others viewed as a scary steel tomb was Ed's secret weapon. The American Disability Rights Movement, a multi decade national campaign advocating for the civil rights of people with disabilities, began with a small campus protest in Sproul Plaza. Ed and John Hessler strategically set their demonstration in the sacred temple of Berkeley activism, where the free speech movement began. From Vietnam War protests to the Third World Liberation Front and the ugly battle over People's Park, the Sproul Hall Steps was the place. Sproul Plaza was a counterculture circus, a daily celebration of individuality and freedom of expression. Disabled student Bob Metz once described the Sprout Symphony as two guitarists and a fiddler playing the Grateful Dead's ripple, combined with a pair of violin playing women in bathing suits and straw hats performing classical music, all surrounded by a chanting orange troop of Hari Krishnas burning incense and ringing bells. It was a phantasmagoric public theater of youthful creativity. The disabled students had a special fondness for Sproul Hall. It was the first accessible campus building. Five years earlier, Ed and Dean of Students Arlie Williams convinced the administration to install a wheelchair ramp at the side of the building. It was an important beginning. By Berkeley standards, the rolling quads held a very humble demonstration. Eleven students in electric wheelchairs and an equal number of nondisabled supporters traveled from Cow Hospital to the base of the steps at Sprout Hall. Many wore fatigue army jackets, the unofficial uniform of Vietnam era protests. Carrying signs and chanting slogans, they circled Ludwig's fountain at the plaza center. Many students glanced over but just passed by. A curious few wandered in, drawn by the eye catching gathering of wheelchairs, summoned by the sound of Ed and John Hessler speaking into a megaphone. The angry rhetoric of young people berating callous and unjust authorities was familiar stuff. The stories and issues were new. The two rolling quad's leaders narrated the daily lives of physically disabled students. With great patience, they detailed the kinds of accommodations they needed to attend lectures, to study, and to keep up with assignments. As essential as these arrangements were, they certainly didn't define these cow students. The speakers touted the group's oft overlooked talents, intellectual ability, and strong desire to earn a degree. They were not charity cases. They were college students, like any other. But the Department of Rehabilitation was letting them down. They had promised to supply the necessary support and funding so that the students could succeed. But then they pulled a cruel trick. The cold state bureaucracy yanked the rug out and walked away. Hessler explained. The accommodations will make the opportunity a reality. Without the accommodations, there is no reality or opportunity that can be fulfilled. Ed smartly persuaded the reporters to back the rolling quads. The San Francisco Chronicle and the Berkeley Daily Gazette portrayed the disabled students as victims of an unreasonable counselor and an unresponsive state agency. The decision to cut off funding to Lawrence and Biskamp amounted to inhumane treatment of disadvantaged people doing their best to make it in a challenging world. A state rehab spokesperson hung Withington out to dry, stating inaccurately that she exceeded her authority in telling them they had to leave Cow Hospital. Ed, the savvy graduate student who spent much of his teen years watching black and white television via a mirror hung above his supine head, knew the power of the media. His strategy foreshadowed, for example, the tactics of sophisticated gay rights groups decades later. In the mid eighties, angered by the lack of television and newspaper coverage of the AIDS epidemic, gay rights activists systematically sought relationships with television and print journalists. Depictions of gay persons shifted from illness and depravity to normality and humanity. Interpersonal connections with reporters would change media depictions of otherwise devalued persons. While Ed enjoyed a rousing public protest, it was primarily his work winning over local newspapers that turned the tide. Supervisor Rod Carter quickly reinstated the two students and reassigned Withington to other duties. Ed later observed, We knew that when you shine the light of publicity on a state agency, they can't take it. Carter replaced Withington with Gerald Belchick, an experienced counselor who bent over backwards to give the students control of the program. He later said, Essentially, they, the students, got carte blanche. There wasn't anything they asked for they didn't get. Ed and his rolling quads not only won the first fight of the disability rights movement. In the tempestuous political climate of Berkeley, California, they invented a new kind of American politics. Disability was no longer just a matter of physicians and hospitals treating sick persons. It wasn't simply a matter of rehabilitation and hopeful recovery. It was a civil rights issue, a struggle by rejected and pitied people to gain access to the opportunities of mainstream society, to gain value in the hearts of fellow citizens. The very people who many viewed as weak, incompetent, and dependent, would lead the way. Working with people with many kinds of bodily impairments, from Berkeley, across the United States and around the world, Ed Roberts crafted his life within and through this new movement. On the long activist road from Cowell Hospital in september nineteen sixty nine to signing of the Americans with Disabilities Act by President George H. W. Bush in july nineteen ninety, the man in the iron lung became an unlikely hero, an extravagant self promoter, an exorbit risk taker, an unyielding fighter who made his mother proud. He didn't just lead the national and international disability rights movement. He very consciously and forcefully created an affirmative new way of being a disabled person. As Ed Roberts elevated himself and his people, he became the most recognized and celebrated disabled person on the planet.