The family relocated to Japan around 1955 when her father was stationed in Tokyo. By this time, 11-year-old Kitty’s diagnosis had been changed to polio. “They were going to do this surgery on my hip,” Kitty remembered. “I was laid up for a long time, and I was really significantly weaker after it was over. ... Then they wanted to do the other hip and I begged my mother—I said, ‘Please, it’s making me worse. Please, please.’ But a parent generally will listen to a doctor; I mean, who’s going to think that their kid knows more than their doctor—which it turned out I did, instinctively, know that they were messing me up.”
Around age 15, Kitty returned to the United States alone to live with an aunt in Washington, D.C. It was here that she was finally diagnosed with muscular dystrophy. Her parents and siblings were still in Japan. “[My aunt’s] writing to my parents to tell them that I’ve got this diagnosis,” Kitty said. “At the time, what the doctors told her, and the materials that she read, she thought ... that I would probably die before, say, before I was 20 or something like that. I mean, can you imagine my poor parents?”
Kitty attended the Holton-Arms girls’ boarding school. She participated in social gatherings by recording popular music onto a big reel-to-reel tape recorder. “I would tape an Elvis song and a Pat Boone song ... and then take it around to parties because you could carry it.” She had a large group of friends, but often felt left out in the dating scene.
Kitty bounced from school to school—sometimes because of her father’s military station and sometimes her physical needs. A stint in Richmond, Ky. in 1959 cemented in her an anti-racist spirit. “This was where I started getting into the fights about racism. And boy, I was unrelenting in bringing up the issue.”
Following her time at Holton-Arms, Kitty and her family moved to Augusta, Ga., where she attended a segregated school. She didn’t think much of its academic standards and continued to get into arguments. “Kids from the actual school—I remember things that just horrified me. I didn’t want to be friends with anybody. By this time, the race issue was very, very much on my mind,” she said.
This conflict entered the home as well. Like many Americans, Kitty’s family watched the progress of the Civil Rights Movement on TV. “My mother thought that was a good thing; my father thought that was a bad thing,” Kitty said. “There were a lot of arguments about it.” This was also the topic of Kitty’s first real fight with her father. When a local Black family was refused entry to a church, Kitty proudly wrote a letter to send to the Augusta Chronicle. “I showed my father, thinking that he would think it was a good thing...because I was very religious—we are supposed to be thinking about our souls and the things of the spirit and not things of the body. So why should we be paying attention to the color someone else’s skin?” Her father, however, got angry.
The next year, her father enrolled Kitty in Aquinas High School, a Catholic girls’ school, her fifth high school in barely three years. She’d attended 13 different schools so far in her youth. Despite being resistant at first, Kitty ended up enjoying Aquinas school, even though she was the lone Protestant and “just could not believe in the infallibility of the Pope.”
After graduation, Kitty enrolled at the University of Illinois at Urbana-Champaign. Her choices of college were heavily limited by lack of accessibility. “I wanted to go to an Ivy League school,” she said. “I really wanted to go to a women’s college. I had tried a couple of places, and I just realized that I needed to be using a wheelchair although I could still walk. ... My family made the decision for me … [The University of Illinois] had, I think, between 100 and 200—I’m not sure—students in wheelchairs.”
This meant the university had better accommodation than most, with frequent shuttles and a rehabilitation program, but they were not in the business of caretaking. Disabled students were not permitted regular assistance, or even motorized wheelchairs.
“The prevailing ethic was that the world is the way it is; you need to be prepared to deal with whatever you encounter,” Kitty explained. “For example, we were not ever supposed to get pushed in our wheelchairs even though sometimes there was a lot of snow, and it was fifteen below zero with the wind chill factor. ... because ‘If somebody saw you getting a push across campus, and they were a prospective employer, they might think that a person in a wheelchair could not work independently.’”
The first week of school, Kitty met Mary Lou Breslin, who would become a lifelong friend and fellow activist. Mary Lou had polio and was a more experienced wheelchair user than Kitty. “She knew how to transfer from her wheelchair into her car and into her bed,” Kitty said, “and was just very confident in how to operate as a disabled person. I didn’t really have a clue.” The two were fast friends and even became cheerleaders for the school’s wheelchair basketball team.
In 1963, when Kitty was just 19, her mother died. Her family’s tendency to stay silent about unpleasant issues extended to her mother’s advanced throat cancer. Up until the day she died, mother and daughter had been talking and corresponding and no one ever mentioned cancer. Molly Mattis Cone died on the operating table and Kitty hadn’t even known she was having surgery. Shocked and devastated, Kitty left school to attend the funeral and didn’t return for several months.
When she did return to college in 1964, she fully embraced the activism of the era. She ran for the student senate (she won), volunteered with the NAACP, and worked with Friends of Student Non-Violent Coordinating Committee to raise bail money for Black protestors who got arrested. Her condition progressed and the head of the university’s rehab center cautioned her, “‘You could be getting weaker from all these extracurricular activities like all these protests.’ Which is an absurd thing to say,” Kitty said.
Her activism caused a rift in the family, especially when Kitty herself was arrested at a demonstration. Her family bailed her out, but she returned home to family members who were angry with her. The most tolerant was her conservative Republican uncle; he was running for congress and thought having a radical niece might win him a few votes from the left. Her father, however, disowned and disinherited her. “I remember thinking, ‘well, here I am,’” Kitty said. “I still thought I was going to die pretty early. I thought I was going to die about 30. Here I am, I have this fatal disease, my mother’s dead, my father hates me.”
None of this dissuaded Kitty from what she believed in. She handed out leaflets about ending the Vietnam War, enduring name-calling and even being spit upon by pedestrians. While the men spoke, it was the women who did all the organizing. Kitty and the other women ran the mimeograph machine and prepared meals. School took a backseat to what felt like deeply necessary political fights. By 1967, Kitty said, “I only took a couple courses just to enable myself to remain a student so that I could continue to organize.”
She had even left the university’s rehabilitation program. “I had my apartment by this time. [The rehab program] thought I was really an embarrassment because I was a very obvious person in a wheelchair, and I was just out there in the public eye because I was one of the major campus organizers.” She left school in the summer of 1967, just eight hours shy of a bachelor’s degree that she’d never complete. Her political work felt more important.
Believing she might die young, Kitty was eager to experience some of life’s milestones, including motherhood. Her physician, a man she respected, balked at the idea. Many of his concerns were valid and Kitty was willing to hear them, but others stung. “They [the doctor and her aunt] didn’t think a person who had a disability could be a good parent,” she said. “I’m sure the fact that I was single didn’t help.” Her health and expected early death made her reluctant to enter romantic relationships. “I didn’t want anybody to get committed to me, I didn’t want anybody staying with me and feeling sorry for me.”
She eventually decided to be sterilized and the doctor agreed with almost no additional questions. “When I look back on it,” she said, “I think it was amazing. Here I am, a single person in their 20s with no kids—but these other two people [friends of hers] who had finished their families had to get their husbands’ permission and had to wait. Clearly there was such a double standard and I was meant to be sterilized.”
In the years following college, she worked closely with radical feminists, with socialists, and communists, but she still hadn’t connected her own experience as a disabled person to the civil rights battles that filled her days. “I wanted to have some curb ramps, but it didn’t occur to me that it was a political issue,” she said. When she met disabled people who were outside the activist circles, she noted they were much angrier than she was about these issues. She was somewhat insulated because her friends in the Socialist Workers’ Party helped her navigate a world not designed for a person in a wheelchair.
Kitty worked with an abortion coalition until the 1972 bombing of Hanoi in North Vietnam pulled her focus back to the anti-war efforts. Around this time, she also came out as a lesbian, further fracturing the remaining family relationships she had. “Being gay was seen as a complete horrid aberration. ... My relatives who were my age all knew about it, but I tried to keep it from the older generation.” She described this time in her life as miserable and isolating.
She moved to the Berkeley area of California in 1973 and almost stumbled into disability activism when the Muscular Dystrophy Association helped fund her “super wheelchair.” She didn’t have a strong opinion about the Jerry Lewis Telethon, so she agreed to go on the show from a local station. “They said, ‘This is Kitty Cone, and we bought her this wheelchair. Kitty, do you have anything to say?’ I said, ‘I love my wheelchair. It’s really strong, and it’ll go anywhere. But the problem is there are no curb ramps ... We need curb ramps in Oakland.’”
Soon after, in 1974, Kitty discovered the newly founded Center for Independent Living when she went in for wheelchair repair. The CIL was born out of the disability rights movement in the area and Kitty immediately fell in love. “They really had been living what I considered independently, in a way that I hadn’t,” she said. “I didn’t have full control over when I was going to take a bath, when I was going to do whatever. And here were these people ... really, really managing their own lives.”
Kitty began volunteering with CIL. She waded deep into the details of government, commerce, litigation, and federal funds. Securing municipal buy-in for public works projects often meant arguing the minutiae of contracts, bills proposed to the local city government, and writing grants. She learned the value of collating statistics and data. She worked on campaigns to make Bay Area Rapid Transit and Alameda-Contra Costa Transit more accessible to wheelchair users and disabled riders.
In late 1975, Kitty traveled to Mexico with girlfriend Alma Noriega. The couple had a lot of happy times in Mexico, but also experienced significant discrimination and Kitty’s alcoholism became more present in her life. These months were a hiatus from her activism work. She returned to Berkeley about a year later because she didn’t enjoy being a housewife and “I missed my politics.” She stepped right back into her work with the CIL and met Judy Heumann, an experienced disability rights activist. The two were kindred spirits, and the issue that soon emerged for them was the 504 Regulations.
Britta Shoot wrote for Atlas Obscura, “The Rehabilitation Act of 1973 included the little-noticed Section 504, which was based on the 1964 Civil Rights Act and mandated integration of people with disabilities into mainstream institutions. ... It was up to the head of HEW to sign and implement guidelines specific to Section 504, which would further inform other agencies including the Department of Transportation and the Department of House and Urban Development. By 1977, disability rights activists [were] weary of asking nicely for their civil rights.”
“These regulations would set the standard,” Kitty said. “Everybody knew that ‘separate’ for people with disabilities is not ‘equal.’” When activists like Kitty and Judy heard that a task force assigned to work on 504 was “watering down the regulations” with no input from disabled people, their American Coalition of Citizens with Disabilities began strategizing. They deliberately borrowed strategies from the Civil Rights movement to draw parallels between the causes.
Kitty was just one of dozens of sharp-minded disabled activists in the Bay Area—along with hundreds across the country—who coordinated the protest. Local paralegals gave Kitty and others a crash course in the 504 Regulations, the changes being proposed, and the impact those would have. They were taught how to talk about the pros and cons and explain them to press and outsiders. The rally was organized publicly, but the sit-in was planned in secret. “We told people individually to bring their sleeping bags, that there was going to be a sit-in,” Kitty said.
The ACCD reached outside the disabled community to get the endorsement of trade unions, churches, and other civil rights groups, including the NAACP and the Black Panthers. “My whole adult life up to that point—with the exception of the period that I worked at CIL—had been as a community organizer or political organizer,” Kitty said. “I worked in the anti-war movement, building anti-war demonstrations. ... If there was anything that I had learned from being in the SWP, it was that you always build the broadest support for your issue—whether it’s abortion rights, or ending the war, or equal pay for equal work, or ballot access—that you go to the organizations in the community that represent women and minorities and unions and churches and just go for the broadest support.”
On the morning of April 5, 1977, Kitty was nervous. They’d sent scouts, but she didn’t know what the HEW building looked like inside. She worried security might close the doors on them before their sit-in could begin. Judy gave the speech that contained the signal.
“‘Let’s go up there and ask them what’s happening with the 504 regulations!’ … That was the signal, and we all just went in. We went up to the director’s office,” Kitty said, describing the wheelchairs pouring up the ramp into the building. “And this man knew nothing; he didn’t even have a clue. ... I totally admire Judy’s ability to take this man who knew nothing and cream him. ... [F]or public relations purposes, it was perfect. It was absolutely perfect. ‘What do you mean you don’t know?’ That kind of thing. It was great.”
An estimated 120 activists took over the HEW building for almost an entire month. This would be a challenge for any group, but the physical needs of the protestors made this a feat of tremendous endurance and passion; they were literally putting their health on the line. Many used walking aids and wheelchairs. Deaf protestors needed translators at hand. Some attendants stayed throughout the demonstration, but frequently the protestors with different abilities helped each other.
“I slept in this closet off the main room,” Kitty said. “I had to be turned over at night, so I think—my attendant was turning me over the first few nights, and then someone else was doing it. Debbie Stanley, this blind woman, began to do it at a certain point, and I was sleeping on those cushions that I had brought out of my van. I was actually probably more comfortable than a lot of people. I remember I was wolfing down sleeping pills to get through the pain.”
Supporters held daily rallies outside to keep the press engaged. The Salvation Army donated cots and blankets. Local social service organizations delivered meals, including the Black Panthers who brought homemade food every single day at the urging of Bradley Lomax, a Panther with disabilities.
Inside, the protestors played cards, and sang freedom songs. They paid close attention to the news coverage, both on television and in the newspapers. “In the beginning,” Kitty recalled, “it was ‘an army of crippled and deaf and dumb people went into the federal building.’ So we decided that we were going to have to educate the press about terminology.” They held frequent press conferences. Though the news wasn’t getting into The Washington Post, some local reporters became very invested in the issue.
The group of 120 soon chose a delegation of 14 (not including attendants and translators) to travel to D.C. to plead their case. Both Kitty and Judy were chosen. The FBI had been actively monitoring the building and they tried to take advantage of this change in power by calling in bomb threats, but the remaining protesters were steadfast. They had one order: Hold the building. So, they held it.
The machinists union funded U-Hauls, which were the only vehicles suitable for multiple wheelchairs, and helped cover airfare to transport the delegation to Washington, D.C. The California activists were housed in a church and connected with people from Philadelphia Disabled in Action. They began pursuing press coverage and meetings with congresspeople. They organized a demonstration across from the White House in Lafayette Park that featured speakers from their group and political supporters. After weeks of exhausting, non-stop work, Kitty and the others returned home, assured the 504 Regulations would be signed. And it was, on April 28, 1977, bringing an official end to the sit-in.
“After the regulations were signed, everyone was absolutely jubilant,” Kitty said. They marched out of the HEW building on a Saturday. “You can see tapes of people coming out of the building, and they are so happy... It was probably one of the highest moments in many of our lives,” including hers. “I had been involved in many demonstrations, but they had never effected such concrete, positive results.”
The 504 Regulations didn’t turn out to be the boon she’d hoped and many of the rights they thought they won that day weren’t really enshrined in law until the Americans with Disabilities Act in 1990, but the press coverage meant the public at last saw the diversity and strength of the disabled community. Before the sit-in, “people all over the country were not thinking of people with disabilities as an oppressed minority or a group deserving of civil rights,” Kitty said. “They were thinking of people with disabilities as a group—whatever, Jerry Lewis—of people who were objects of charity, objects of pity, probably a group of people who were very weak.”
After this victory, Kitty continued right along with other battles, focused again on transportation. When BART considered removing agents from their stations, Kitty and her colleagues at the CIL stepped in. “We pointed out, what if somebody has a seizure, what if somebody got stuck in the elevators, what if somebody needed help? There were just too many reasons for having a human being around—that it was necessary to have a human being,” Kitty recalled. “There was a lot of support from the League of Women Voters.”
In 1980, Kitty and her partner and fellow activist Kathy Martinez, who was blind, traveled to Nicaragua. Kitty was interested in the revolution there, as well as the disabled community left by the violence. The couple came with videos and books about living with disabilities. “Most of these people were brand-new, spinal-cord injured, as I recall,” Kitty said. “It was the same as in the United States, you know: nobody was talking about whether or not they would ever be able to have sex again, whether they would be able to have a baby, whether they could satisfy a woman. ... That was one of the things they really wanted to know about.” Kitty and Kathy made many good friends, and Kitty was even able to join a local Alcoholics Anonymous there to help her maintain her new sobriety.
Kitty, now 36, regretted having been pressured into sterilization in her 20s. She wanted to have a family, so she and Kathy began looking into adoption. As a gay, interracial couple, they found obstacles in every direction in the United States. Kitty turned to her contacts in Mexico to facilitate a legal adoption there. She met her son Jorge when he was just a day and a half old.
Kitty continued her activism, but the political climate had changed and most of her limited energy went to Jorge. “I looked on it as a paycheck,” she said of returning to work at CIL. “This sounds cold to say, but my absolute first priority was my son. I [still] cared about the disability rights movement.”
The Disability Rights Education & Defense Fund had been formed at the CIL in 1978 and Kitty joined the board in 1987. She became the development director in 1993, with a focus on writing grants. Kitty retired from DREDF in 1999, but never stopped working with them on civil rights projects.
In the late 1990s, with Jorge in his teens, Kitty reconciled with family after an aunt’s death. “I just made the decision this year that those family ties are very important to me and need to be nurtured,” she said in 1998, “because I really, really love my cousins and my brother.” She and Kathy had separated at some point after Jorge’s adoption.
Kitty died in Berkeley in 2015 on March 21, only two weeks before turning 71. Towards the end of her interviews with David Landes, she noted that disabled people “pose the question probably more clearly than any other group, because if you look at the African-American community, it's racism and the ravages of racism that make the unemployment and the bad schools and the poor housing. ... But I don't know that people would say, ‘Well, how on Earth is so-and-so going to work when they're blind and in a wheelchair? What do they really have to offer? What do they really deserve, other than a pittance or some minor amount of welfare?’
“Well, I believe that what a person who's blind and in a wheelchair deserves is everything they need to live a quality life, and this society is capable of doing that.”
Sources:
Disability Rights and Independent Living Movement Oral History Series: Kitty Cone
Atlast Obscura: The 1977 Disability Rights Protest That Broke Records and Changed Laws
Disabled History: Kitty Cone
Center for Independent Living, California: History
Disability Rights Education and Defense Fund: Timeline
Wikipedia: Kitty Cone, 504 Sit-In