[blindlaw] Article: Disability rights movement's legislative impact sprang from on-campus activism, ABA Journal, January 2018 Issue

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Disability rights movement's legislative impact sprang from on-campus activism

ABA Journal

January 2018

By Stephanie Francis Ward



Because she had contracted polio as a toddler, Judith Heumann couldn't attend her neighborhood school in Brooklyn. The principal thought her wheelchair would be a fire hazard.



That experience figured in with discussions she had at Camp Jened, a two-month summer program in Hunter, New York, for kids who have developmental disabilities.



"It was discussed as young people that we wanted to have more. We'd talk about what we saw as the struggles of the day and how we wanted to help change that," says Heumann, mentioning examples such as transportation, housing and education.



She organized similar discussions at a school she attended that was specifically for children who had disabilities. In 1970, she formed Disabled in Action, the first cross-disability organization. Inspiration came when she was denied a teaching certificate on the basis that she couldn't walk. Heumann, a 1969 Long Island University graduate, sued the New York City Board of Education. Shortly afterward, the entity reversed its position.



She was likely the first teacher to use a wheelchair in New York City, and her story got national attention.



Throughout many years, disability rights activism has flourished through programs that advocate independence and provide young people opportunities to discuss with peers how laws could improve their lives. Some participants, including Heumann, went on to be leaders in the independent living movement, and their activism led to federal laws that prohibit disability discrimination in the public and private sectors.



TOUGHING IT OUT



President Franklin D. Roosevelt started one of the earliest programs in Warm Springs, Georgia, at a rehabilitation facility with mineral springs. Diagnosed with polio at age 39, Roosevelt started visiting the town's Meriwether Inn in the 1920s after he heard that its water could help with his below-the-waist paralysis. Roosevelt bought the property in 1926; replaced the inn with accessible buildings; and created the Warm Springs Foundation, a nonprofit group that provides comprehensive rehabilitation services.



"African-Americans were not welcome, but for white people who were middle class and had the good fortune to go there, this was a place where they could go and meet with the president; he was kind of a mentor," says Catherine Kudlick, a history professor at San Francisco State University who also directs the Paul K. Longmore Institute on Disability.



During that era, people with disabilities were expected to tough them out, and they were frequently celebrated for doing so, Kudlick says.



This was especially true for polio survivors, and Roosevelt played a role in that outlook. The mindset also led to placing children who had polio at live-in facilities because doctors thought their families would coddle them too much at home. "In the polio rehabilitation hospitals, they bonded with each other and said: 'This sucks; we're going to push for rights later on,' " Kudlick says.



CAMPUS ACTIVISM



Around the time Heumann formed Disabled in Action, Ed Roberts recruited her and other disability activists across the country to come to the University of California at Berkeley. Roberts was a doctoral candidate in political science who had contracted polio and was paralyzed from the neck down.



Roberts was the former head of the California Department of Rehabilitation; and along with Heumann and Joan Leon, they co-founded the World Institute on Disability. Roberts, who died in 1995, was the first severely disabled student to attend Berkeley, according to his New York Times obituary, and no dorm could accommodate the 800-pound ventilator he used to sleep. Roberts lived in an empty wing of the university's student health center, with the condition that it be treated like a dorm, not a medical facility. Many other students with disabilities moved in, too, and they called themselves the Rolling Quads.



Inspired by what the university's free speech movement did for the civil rights and anti-Vietnam War movements, disability activists at Berkeley focused on independent living. Their platform included people with severe disabilities having attendant services rather than living in group facilities. And each individual-not the aide-decided for themselves what to eat, what to wear and when to go to bed.



"It was just a very exciting period of time. I compare it with being at a candy store, where you have all these different things that you could work on," says Heumann, who got a master's degree in public health in 1975 from Berkeley. She has since worked as the special adviser for international disability rights at the Department of State, to which she was appointed during the Obama administration. She now works to broaden discussions on the intersectionality of disability rights through her social media project the Heumann Perspective. She also was named a senior fellow at the Ford Foundation in September.



Another college program that attracted students with disabilities was at the University of Illinois. The program was originally started for World War II veterans attending college on the GI Bill, and it was at the veterans hospital on the U of I's Galesburg campus. The state closed that campus in 1949, and students traveled to Springfield to protest. In response, the state moved the program to the Urbana-Champaign campus.



That campus wasn't completely accessible, says Lindsey Patterson, a history professor at Elmhurst College whose scholarship focuses on disability activism. "The students knew the university wouldn't change sidewalks unless damage was done, so they'd go out in the middle of the night in wheelchairs with sledgehammers," she says. Busting up the concrete resulted in more curb cuts, according to Patterson.



The program, now called the Division of Disability Resources and Education Services, was founded by Timothy Nugent, a military veteran initially hired as a health instructor at the Galesburg campus.



The students involved formed Delta Sigma Omicron, a rehabilitation service fraternity, and a wheelchair basketball team called the Gizz Kids. The team toured nationally, competing against able-bodied players. The program later included other sports, such as cheerleading, football, fencing and baseball.



In her oral history for the University of Illinois, Kitty Cone, a student activist who had muscular dystrophy and attended the college in the 1960s, described Nugent as "an amazing person, in terms of his vision and his implementation of his vision, and for the time he was living in."



However, Cone-who was a cheerleader, a student senator and an active member of the university's NAACP chapter-said the college's rehabilitation program sometimes wasn't supportive of her activism or her desire to move out of the dorms, where women had more restrictions than men. She also had the impression that Nugent wanted students in the program to be "solid citizen types" and said he always challenged her activism.



Cone wanted to move to an apartment off campus because she thought she was getting weaker and wanted the chance to live by herself before it was too late. When she broached the subject with Nugent, she claimed, he suggested her activist activities might be making her tired and questioned her motive to move. "He said, 'Well, are you sure you don't want to just play house?' " Cone said.



"In those days, that meant something-[to] sleep with somebody. ... It was awfully invasive," Cone said in her oral history. Cone, who became a disability activist, left college in 1967 and got a job with the National Mobilization Committee to End the War in Vietnam. She died in 2015.



Fred Fay, an activist who started the online disability forum Justice for All, graduated from the university in 1972 with a doctorate in educational and rehabilitation psychology. According to his University of Illinois oral history, Fay, who died in 2011, was paralyzed from the neck down at age 16 after a backyard accident in which he broke his neck. He enrolled at the college after he learned about its accessibility program while attending the Warm Springs Foundation's rehabilitation program in Georgia in the early 1960s.



Smashing curbs with sledgehammers was before Fay's time. However, working with other students, he created a map with the "most notorious curbs" on campus, he said in his oral history. The map was presented to a local business group, which replaced the curbs with curb cuts, and Fay saw that as the beginnings of his activism.



FEDERAL INACTION



After college, Fay was a founder of the Boston Center for Independent Living, and he was a research and training instructor at Tufts University, where his work focused on independent living. He also was active in making public buildings more accessible, which led to the Architectural Barriers Act of 1968. Like Cone and Heumann, he advocated for Section 504 of the Rehabilitation Act of 1973, which prohibits discrimination against disabled people in programs that receive federal financial assistance.



That legislation was first introduced in 1972. But President Richard Nixon used a pocket veto to kill the act in October of that year, claiming its authorization of federal funds would waste taxpayer dollars. Disability activists organized protests across the country, including one in New York City at the building that housed Nixon's campaign headquarters.



"We shut down traffic on Madison Avenue and then took over Nixon's campaign headquarters four days before the election," says Heumann, who at the time was working on her master's degree at Berkeley.



The bill was reintroduced, and Nixon signed it in September 1973. However, his administration and President Gerald Ford's did not implement the 504 regulation. Opposition to it was growing from entities covered by the law-including hospitals, universities and municipalities.



More disappointment came when President Jimmy Carter took office in 1977.



"Carter had been a disability rights advocate, but he gets into office and starts stalling, too," says Kudlick of San Francisco State University.



The Carter administration's Department of Health, Education and Welfare set up a task force to study the disability community, and it appeared that the regulation was weakening-particularly its integration pieces that provided mainstream opportunities in programs and education for people who have disabilities. The main reviewer of the task force was David Tatel, a former director of the department's Office for Civil Rights, who lost his sight after law school because of retinitis pigmentosa. He now is a judge serving with the U.S. Court of Appeals for the District of Columbia Circuit.



Activists demanded that the 504 regulation remain unchanged and be implemented by April 4, 1977. But that didn't happen. On April 5, they organized sit-ins at 10 major cities, targeting buildings that housed regional Department of Health, Education and Welfare offices. That included Washington, D.C., where a hunger strike took place, and San Francisco, where a federal building sit-in with more than 100 people lasted until the end of April. It ended shortly after Joseph Califano, secretary of the department, signed the 504 regulation.



"We have begun to ensure a future for ourselves and a future for the millions of young people with disabilities, who I think will find a new world as they begin to grow up. Who may not have to suffer the kinds of discrimination that we have suffered in our own lives. But that if they do suffer it, they'll be strong and they'll fight back," said Roberts of the World Institute on Disability at an April 30 victory rally. "And that's the greatest example: That we-who are considered the weakest, the most helpless people in our society-are the strongest and will not tolerate segregation, will not tolerate a society which sees us as less than whole people. But that we will together, with our friends, will reshape the image that this society has of us."



The demonstrations marked the first time that the disability rights movement received international attention, Heumann says.



"At the time, coverage of disability in the New York Times was on the socialite page, about who gave the most money. And there was the Jerry Lewis Telethon, talking about hopeless cripples," says Heumann, who led the San Francisco protest alongside Cone, who organized it.



At the time, both women worked at the Center for Independent Living in Berkeley, the first organization of its kind. The center was incorporated in 1972 and grew from student activists' work at the Berkeley school, as well as a need for support services once they graduated. It was staffed by people who have disabilities and provided services that included referrals for housing or personal aides, peer counseling, and advice on how to advocate for oneself. It also was a template for the hundreds of centers for independent living that exist today-centers funded by a mix of federal, state and local money, as well as private donations, according to Access Living, an advocacy group in Chicago.



CHANGING THE LAW



The Center for Independent Living also established the Disability Rights Education and Defense Fund, which played an active role in litigation that arose from Section 504 regulation.



The first 504 case heard by the U.S. Supreme Court was Southeastern Community College v. Davis. It was brought by Frances Davis, a licensed practical nurse who was hard of hearing; she had been denied entrance to a registered nursing program. The court found in 1979 that denying her admission to the program was not a 504 violation, on the basis that she was not qualified for the program. The finding was unanimous.



The case was argued by Marc Charmatz, an attorney with the National Association of the Deaf. He started working on the case at the appellate level and today points out that Davis did not testify at the trial court level, which was not helpful for her appeal.



"We knew from reading that case that the Supreme Court justices weren't getting it," says Arlene Mayerson, who has worked as directing attorney of DREDF since the early 1980s. "They said that perhaps in the future, there will be better technology so disabled people could have more roles. We wanted to explain to the court that people with disabilities are very capable, and it was society that got in their way."



Five years after Davis, disability rights advocates had another shot before the Supreme Court. This time, in Consolidated Rail Corp. v. Darrone, it went much better for them. The case was brought by a man who lost his job as a locomotive engineer after an accident required that his left hand and forearm be amputated. The Disability Rights Education and Defense Fund filed an amicus brief that supported the petitioner. It focused on educating the court about discriminatory employment practices and the validity of the Section 504 regulations. In the 1984 opinion, a unanimous court found that Section 504's ban on employment discrimination should not be limited to programs that receive federal aid.



Also during the 1980s, disability activists worked to amend the Fair Housing Act's enforcement mechanisms, and they were involved with the Civil Rights Restoration Act-a law that requires federal fund recipients to comply with nondiscrimination laws. President Ronald Reagan vetoed the legislation in 1988. However, the House and Senate later overrode his veto.



Rep. Tony Coelho, who voted to override Reagan's veto, had been focused on amending different bills that included disability language.



"But I realized that it really didn't do much good to do the amendments without our basic civil rights," says Coelho, a Democrat from Merced, California, who has epilepsy.



In 1988, he introduced the first version of the Americans with Disabilities Act.



Coelho was friends with Roxanne Vierra, a member of the National Council on Disability who contacted him about a draft bill. When he introduced it, Coelho sent a "Dear Colleague" letter to the members, asking for co-sponsors.



"As a result, I got Democrats and Republicans. I knew if I didn't get that, it would never pass," says Coelho, who co-sponsored the bill with Sen. Lowell Weicker Jr., a Republican from Connecticut.



Opposition came from the business lobby-including industries such as real estate, medical care and transportation-which argued that the legislation would be too expensive.



Among those who weighed in was actor Clint Eastwood-then the mayor of Carmel, California.



"I think he had a restaurant, and he talked about how the ADA would kill his business," Coelho says. "We advocated that accommodations would not kill a business and put in language that compliance had to be economically feasible. That became a key term."



Fay, the University of Illinois graduate, worked in support of the ADA legislation with Justin Dart Jr., a wealthy Republican who used a wheelchair after contracting polio as a child and was vice-chair of the National Council on Disability. By that time, Fay used a motorized bed for his mobility device, after an inoperable cyst on his spinal cord prevented him from breathing if he sat up, according to his oral history. The device was equipped with a work station, and Fay could access his phone and computer from the bed.



A House vote on the ADA legislation was repeatedly delayed. Jim Wright, a Democrat from Texas who was the speaker of the House from 1987 to 1989, had it referred multiple times to committees, Coelho says, and twice to a subcommittee.



In March 1990, more than 60 people with disabilities went to the U.S. Capitol, where many abandoned their mobility devices and crawled up the building's 83 steps.



The next day, more than 100 protesters who chained their wheelchairs together were arrested at the Capitol Rotunda. Protests are prohibited at the structure, according to a Times article about the incident, and police used large chain cutters and acetylene torches to break up the chains. The Senate passed the bill, and President George H.W. Bush signed the legislation into law that July.



"I think we would have had the votes to pass it without the protest, but it still was very effective. Senators had to walk around or through the wheelchairs and over bodies of the disabled," says Coelho, who resigned from Congress in 1989.



'THE ADA GENERATION'



After the ADA became law, a big change was that expectations grew for children who have disabilities, says Robyn Powell, a disability rights attorney who also teaches at the Boston University School of Law and is a doctoral candidate and researcher at Brandeis University.



"I'm part of what is considered the ADA generation; I was 8 years old when it passed. I was expected to go to school and get a job. People who grew up prior to the ADA had less expectations," says Powell, a member of the American Bar Association Commission on Disability Rights. She has arthrogryposis, which causes restricted movement in her joints.



Despite the post-ADA expectations, she says, disabled people are still perceived as dependent on others. Powell rarely meets lawyers who have visible disabilities outside the disability rights field. She thinks law firms often won't hire lawyers who have visible disabilities because there's a stereotype that they won't be able to keep up with work demands. (See "Making Success Accessible," January.)



"In general, most people who are not familiar with disabilities have low expectations of all people with disabilities," adds Howard A. Rosenblum, CEO of the National Association of the Deaf.



"With respect to deaf lawyers, we are often perceived as unable to function as effective speakers with the necessary eloquence to work successfully and persuasively. Many of us have shown such stereotypes to be completely wrong, but not enough lawyers in for-profit firms have had enough opportunity to interact with lawyers with disabilities to understand our ability to practice law effectively," says Rosenblum, who had finished his first year at the Chicago-Kent College of Law when the ADA became law.



Jason Turkish, a Southfield, Michigan, attorney who is legally blind and has an eye muscle condition, was 3 years old when the ADA passed. He attended a mainstream school. By the time he was in second grade, he knew he had to advocate for himself.



"I was my own first client, and I don't think that is unique. You learn at a young age to speak up or you get left behind. You also learn at a really young age to find teachers who care because there are a lot of them," says Turkish, whose clients include Angelo Binno, a legally blind man who alleges that the Law School Admission Test is discriminatory under the ADA because it requires spatial reasoning and the ability to diagram.



The Supreme Court in March 2017 denied cert in Binno's lawsuit against the ABA, after the 6th U.S. Circuit Court of Appeals at Cincinnati found that because the LSAT is written, administered and scored by the Law School Admission Council-which is not part of the ABA-Binno had no standing to sue the association. Last May, Turkish filed a similar lawsuit against the LSAC, which is pending.



"This is such a young civil rights movement," Turkish says. "It's the relative youth of this movement, from a legal perspective, that creates a really special obligation for attorneys who practice disability rights law. Most of the disability rights law from a precedential standpoint is still being parsed out in the federal courts, and there are endless areas of issues of first impression to be litigated, because this is such a new movement."