Disability Throughout History: Ed Roberts

One of the biggest observations I have made while writing for this blog is, "Boy, it's so different having disabilities today than it was then!" This is not due to chance; this is a consequence of intensive work of disability rights activists and families who fought for decades. My sister was born the year after the Americans with Disabilities Act was passed: her life has been made immeasurably better because of hundreds of activists that my family has never met. Today, I am honoring the work of just one of these crusaders. Though he passed away the day after my sister's fourth birthday, I hope he knows how grateful we are for him.

Ed in the l970s

Edward "Ed" Verne Roberts was born on January 23, 1939 in Burlingame, California. His teenaged parents, Verne and Zona, married and had more sons: Ron, Mark, and Randy. His childhood was typical for the time. He greatly enjoyed playing baseball, almost always being the "captain" of the boys who played together.

Ed, 1950

In 1953, all four of the Roberts boys became ill with poliomyelitis. Ed, tall and athletic at fourteen, was the most severely ill. A headache turned into progressive, painful paralysis. He was left paralyzed from the neck down except for several toes and two fingers on one hand. Ed spent nine months in the hospital, living in an iron lung. He then spent nine more months at a polio center. He became severely depressed and refused to eat, starving himself down to 50 pounds. His mother sent away the special duty nurses and allowed him some decision-making power again, encouraging him to want to live. Ed returned home with an iron lung at the age of 16, his home care funded by the Easter Seals. He slept overnight in the iron lung and often took rest breaks in it during the day. While not in the iron lung, he had to use "frog breathing" (a technique that uses facial and neck muscles to force air into the lungs) to survive.

The Soroptomists, a local woman's club, provided a telephone with a microphone and speaker to help continue his schooling remotely. He thought of himself as a "helpless cripple" and had a deep fear of being stared at. Finally, his mother, Zona, insisted that he begin physically attending school for a few hours once a week. He was forced to face his fears and, with his mother's help, was able to fight for what he needed to succeed. Ed began to think of himself as a "star."

Ed at home with his family

And fight he did. Ed finished all of his high school academic requirements by the age of 20, but almost didn't receive his diploma because he had not completed driver's education and physical education (PE). Even though Zona suggested that his many hours of physical therapy could count toward the PE requirement, an administrator visited the house and told Ed to stay one more year in high school so as not to get a "cheap" diploma. Zona immediately escorted the man out of her home. She instead went to a friend on the school board, who exempted him from the requirements and allowed him to graduate in 1959.

With an interest in sports writing, Ed then went on to the College of San Mateo for an associate's degree. Zona took him to classes and wrote the papers he dictated. His interests shifted to political science and public policy. One of his instructors - also a family friend - encouraged him to apply to the University of California, Berkeley, instead of the more wheelchair-friendly University of California, Los Angeles. He got into Berkeley, even with a dean who, once learning about Ed's physical challenges, commented, "We've tried cripples before and it didn't work." Thankfully, other administrators supported his attendance at the university.

Now came the fight for funding. The California Department of Vocational Rehabilitation initially refused to fund Ed's Berkeley education, stating that he was "infeasible" for employment. At this time, the department focused only on clients with acute, curable conditions (this practice was called "creaming"). Very few clients fought their rejections from the department. Zona, Ed, and the San Mateo Dean of Students would not accept this: they went to the media, which pressured the department to provide the maximum amount of funding for him.

Finally, in 1962, Ed moved to campus to begin studying political science. He was unable to find housing on campus, due to his 800-pound iron lung. The director of the campus health service offered a room in an empty wing of Cowell Hospital. He accepted this proposition, emphasizing that it must be treated as a dormitory space and not as a medical facility. Ed had his own attendants and orderlies to assist in his care, including driving him to and from classes and pushing his wheelchair. Though he appreciated the assistance, he recalled that, “When people would walk up to me, they would talk to my attendant. I was almost a nonentity.”

Early on in his schooling, Ed became severely ill with pneumonia. He originally moved back home but, when his condition worsened, moved back to the hospital. Though he recovered, Ed became terrified of dying in his sleep. He soon learned that he had to relax in order to let his body heal, saying, "...the more uptight you are about your own sickness, you create more tension in your body…you can actually kill yourself and your zest for life…”

Accessibility remained a constant challenge for him. He was usually pulled up the stairs in his wheelchair to classes, but had a scare once when his chair failed and he almost fell down the stairs. He then chose classes based on accessibility; if stairs were required, he made sure to have four people who could carry him. Ed also asked pretty girls to write notes on carbon paper for him and used a mirror and mouthstick to read for classes. Professors accommodated him on how exams were administered. He became quite famous locally and was featured in Parade magazine. He also enjoyed going to football games with his friends. Ed successfully earned his B.A. in Political Science in 1964, an M.A. in Political Science in 1966, and became a Ph.D. Candidate of Philosophy in political science in 1969, but never completed his doctoral dissertation.

Ed using a mouthstick to study while attending UC Berkeley

A friend, Herb, with Ed at a UC Berkeley football game

The hospital living arrangement for Ed formed the foundation for the Cowell Residence Program, where other students with severe disabilities could live and attend the university. The group called themselves the "Rolling Quads." To many, this was the first time they had heard of a positive disability identity. In 1968, the Rolling Quads successfully fought a rehabilitation counselor who tried to unfairly evict two of their own from the Cowell Residence, stopping the ejection and transferring the counselor.

Ed thoroughly enjoyed the freedom of the 1960s by drinking, smoking pot and trying acid, and having "intimate encounters" with other students in their hospital-dorm. Once at a bar with an inaccessible bathroom, Ed relieved himself outside. A nearby cop told him he was under arrest. Ed replied, “You get me, I’ve got to have an iron lung. I’ll die in jail. You’ve got to have an iron lung. You’ve arrested me; now what are you going to do with me?” The embarrassed cop called his sergeant, who scolded him that their jail wasn't accessible to anyone in a wheelchair, iron lung or not. Instead, the officer reported Ed the university and told him not to do it again.

Technology also continued to advance. Ed had tried a power wheelchair years before, but was unable to pilot it with just his two non-paralyzed fingers. Now, though, as more of his fellow students got power wheelchairs, he decided to try again. He realized that by simply rotating the control mechanism, he could operate it. The first time he tried, he crashed into a wall. He later said, “But that was a thrill. I realized that, boy, I can do this.” The Motorette gave him freedom to be without attendants (especially on dates), even though the transistors were still buggy, causing the chair to buck and rock at full speed on one side. Ed carried extra transistors with him and learned to coach strangers through replacing them.

The Rolling Quads were growing up. Ed became a teaching assistant for introductory politcal science courses. More of his friends were getting their own apartments. This led to the creation of the Physically Disabled Student's Program (PDSP), the first student-led disability services program in the country. They provided a number of services to both students and community members, such as finding attendings or helping with wheelchair repair. In 1970. Ed even flew the 3,000 miles to Washington, D.C. with no respiratory support (since planes did not allow respirators) to attend a conference at the start-up of the Federal TRIO programs, outreach programs and services to assist disadvantaged students. PDSP would eventually receive funding from them as well.

The PDSP led to the creation of the Berkeley Center for Independent Living (CIL), the first independent living service and advocacy program run by and for people with disabilities. At this time, Ed was teaching political science at Nairobi College, a small new college for Black students in nearby East Palo Alto. He returned to Berkeley to become the CIL's second executive director. It grew rapidly under his direction and provided models for other community organizations. The CIL "provided attendant and interpreter referral, accessible housing options, mobility training, help getting and keeping disability benefits, peer counseling, public education and advocacy, and the highly visible organization soon made Berkeley the most accessible city in the country." In a delightful example of poetic justice, Ed was appointed the Director of the California Department of Vocational Rehabilitation in 1976, the same organization that had told him he was too disabled to work years earlier.

Ed lecturing, sometime in the late 1960s/early 1970s

Disability activists like Ed led the way by holding demonstrations to enforce section 504 of the Rehabilitation Act of 1973, which states that “no otherwise qualified handicapped individual in the United States shall solely on the basis of his handicap, be excluded from the participation, be denied the benefits of, or be subjected to discrimination under any program or activity receiving federal financial assistance.” They held a 28-day sit-in at the offices of the Carter Secretary of Health, Education and Welfare (HEW) in San Francisco in 1977. The protestors were denied access to phone lines, food, hot water, and backup ventilators, but were supported by unions and civil rights groups, including the Black Panthers and the Butterfly Brigade. During this, Ed and others spoke in front of crowds of people to support their cause; the speeches were so moving that even a representative from the Department of HEW joined the sit-in. Their fight was successful (see here for more details) and had immediate effects: courthouses were required to have ramps, new busses must be accessible, and medical, nursing, and professional schools could not deny students because of disability. All of this led the way to the Americans with Disabilities Act of 1990. This landmark legislation prohibits discrimination based on disability. I also highly recommend the 2020 documentary Crip Camp, currently streaming on Netflix, to learn more about the disability rights movement.

Ed on the cover of The Independent magazine, published by the CIL

During this time, Ed's personal life also continued on. He exhibited a positive and joyful model of independence. He swam with dolphins, studied karate, and rafted down the Stanislaus River. He mourned his youngest brother, Randy, who tragically was shot and killed trying to recover a stolen purse from a robber. And he even found love: Ed was married from 1976-1982 to Catherine Dugan, an occupational therapist. They had one son together, Lee. Ed adored his son, calling him his "miracle child," since the doctor had been giving him medications that usually had the side effect of infertility. Lee had been born in their Sacramento home, following 48 hours of labor while Catherine listened to her favorite John Lennon album on repeat. The story goes that he was born during the song, "Imagine."

Ed and Catherine at their wedding in their backyard, 1976

Ed and his son Lee, 1980s

Ed served as Director of the Department of Vocational Rehabilitation until 1983, when he returned to Berkeley and co-founded the World Institute on Disability with Joan Leon and Judy Heumann. This internationally-known organization is the epicenter of disability politics and activism. Ed was awarded a MacArthur Fellowship the following year, using it to fund institute initiatives and lecture globally; when asked what else he wanted to do, he said that he would like to wipe out polio. Meanwhile, hundreds of Centers for Independent Living had formed all over the world. They held conferences and established the National Council on Independent Living (NCIL), which meets annually in Washington, D.C. Ed spoke at the first conference in Kansas City, Missouri in 1981 (available on YouTube).

Professionally, he described himself as a diplomat. Ed traveled the world in his custom-build wheelchair, which contained a "power-operated Recaro seat, which reclined when he needed to lie prone; a headlight, for nighttime driving; and a space in the back for a respirator, a battery and a small portable ramp." It even had a bumper sticker on the side that read, "YES!" Ed's big personality filled every room he entered. His friend, Joan Leon, later remembered, "When he came into the room he captured people’s attention. He kept that attention by moving his chair slightly—rolling it back and forth, lifting and lowering the foot pedals, and raising and releasing the back, even honking the horn or turning on the light.” Ed even appeared on a 1989 episode of 60 Minutes (available on YouTube) and in a short 1994 documentary called Free Wheeling (also available on YouTube).

Ed's wheelchair

Beginning in the 1980s, Ed was required to use mouth positive pressure ventilation to breathe during the day: many pictures of him show a plastic sidepiece in his mouth, which delivered air to his lungs from a portable ventilator attached to his wheelchair. His voice was described as “reedy, pitched in high mid-range, his words measured in a cadence punctuated by the whoosh of a portable respirator slung under his chair.”

Ed in his later years

On March 14, 1995, at the age of 56, Ed Roberts died from cardiac arrest. Many mourned his passed and he has since been honored in many ways. The Ed Roberts Campus was created as "a national and international model dedicated to disability rights and universal access" located "at a fully accessible transit hub." At the NCIL meeting two months after Ed's death, his empty wheelchair was towed by a volunteer, symbolically leading a memorial march of over 500 advocates to a vigil in a Senate office building. The wheelchair was then donated to the Smithsonian. Someone who visited years later saw the chair and wept: “I remember just welling up—at how beautiful the chair was and that it was empty: There was no one driving it. It was stock still, and Ed was not a still kind of guy. He was a mover and a shaker.”

Ed's papers are held at the Bancroft Library at UC Berkeley and an in-depth oral history from 1994 is in the California State Archives (available online). His birthday, January 23, is "a day of special significance" in California, as of 2010; Ed was inducted into the California Hall of Fame the next year. And, in 2017, his 78th birthday was honored with a Google Doodle.

Today, Ed Roberts is remembered as the "father of the independent living movement." He often told the story of a physician telling his mother while he was ill with polio, "You should hope he dies, because if he lives, he'll be no more than a vegetable for the rest of his life." When retelling this, Ed would add, "So I decided to be an artichoke - a little prickly on the outside but with a big heart."

Most sincerely,

Clem

Disability Throughout History

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Tuesday, July 6, 2021

Ed Roberts - Be an Artichoke