Judy Heumann died suddenly on Saturday, March 4. When news of her death broke, the outpouring of respect, love, and awe at what she had achieved in life was and continues to be huge.  

During the pandemic, Kara Buckley and I had the privilege of interviewing Judy and telling her story for our 2021 book Pure Grit published by Gillette Children’s Healthcare Press. We used Judy’s own words as the title for her story: It wasn’t actually an “I,” it was a “we” –  that any story of changing the world is always the story of many. 

Below is an excerpt from our interview and telling of Judy’s story.

Brooklyn, New York, 1952 

A fiercely intelligent five-year-old is denied entrance to school because of a few steps. The little girl in a wheelchair is considered a “fire hazard” by the principal, her chair a “dangerous obstruction.” 

Washington, D.C., 2010 

Years later, that little girl, now a fiercely intelligent woman, is appointed by President Barack Obama as Special Advisor for International Disability Rights, a new position and one she would hold for his two terms in office. 

One man sees a fire hazard, another sees a firebrand. One sees problems, another sees possibilities.  

The story of disability rights activist Judy Heumann and the story of the U.S. disability movement are so interwoven one can’t be told without telling the other. Here goes. 

***

Judy was born in Brooklyn to German-Jewish immigrants. Judy’s parents, Ilse and Werner, had come to live in the U.S. as teenagers in the 1930s, both having been sent separately to live with relatives. 

Judy, the oldest of three children, contracted polio when she was eighteen months old, leaving her quadriplegic — unable to walk and with limited use of her hands and arms. She only discovered in her thirties that doctors had recommended she should be institutionalized. Though that was conventional advice at the time, it would never have been countenanced by her parents, themselves orphans of the holocaust. Instead, ignoring that advice, over the following years Judy’s parents fought for her inclusion — a fight Judy herself would later take on. 

After that day when Judy was turned away from kindergarten for being a fire hazard, her mother tried a local Jewish day school. The principal there said Judy could attend if she learned enough Hebrew, so Ilse arranged classes for Judy, only to have the principal later rescind the offer.  

When Judy was six, the Board of Education contacted her mother to tell her that Judy was now eligible for home tuition, and she was granted two and a half hours per week. She has written of those days, “I did the meager homework . . . left for me, but what I mainly did was read. I read and read and read.” 

Despite these early setbacks, Judy was included — and welcomed — in her neighborhood. She and the kids on her block figured out ways for her to participate in her wheelchair. That taught her at an early age that when you assume problems can be solved, most things are possible. She joined her siblings and friends for extracurricular activities such as Hebrew School, Scouts, and piano lessons. She also enjoyed robust discussion and debate around the family table.  

It took much research, and it wasn’t until Judy was nine years old, for her mother to succeed in finding a school Judy was allowed to attend — but it was an hour-and-a-half bus ride from home. The program, called Health Conservation 21, was specifically for disabled children. It was run out of the basement of a regular school, and very soon it became apparent to Judy that the two were different. The nondisabled kids (the children upstairs) were kept separate, got far more tuition time, were taught a regulated curriculum, and for them school was mandatory. She, on the other hand, had to take a nap and attend therapy, so daily tuition was less than three hours, and the students in her class ranged in age from nine to twenty-one. 

While the program taught Judy little academically, she was happy to be able to get out of the house daily. As well, having the opportunity to talk with other disabled students about everything from dealing with people who stared to not being able to choose her own clothes (because her closet was inaccessible) to why they were being treated differently from the kids upstairs, she began to learn what could now be termed “disability culture.”  

Those early lessons would not be forgotten.

***

Her first taste of what life would be like if society truly included disabled people came from her summer camp experiences. From the time she started at Health Conservation 21 until she was eighteen, she attended camp. It was there she first tasted freedom, and the experience was profound: “I went to two different camps over the course of my youth, and I would say both of them were very important because they were opportunities for me to be with other disabled people; to be learning how to spread my wings; to be learning what I was interested in and what barriers I felt I was facing, and we were facing as a group.”  

In her memoir, she has written of the significance of those summers: 

Camp was . . . designed specifically with our needs in mind, and our parents paid for us to be a part of it. Our participation wasn’t contingent on someone else’s generosity; it was a given . . . The counselors were paid to do these things for us, which made all the difference in the world . . . asking people to do something for you when you’re not paying them or they’re not required to do it in some way means that you are asking someone for a favor. 

Many of the people Judy met at camp became lifelong friends and would also play important roles in the disability movement. (One of the camps she went to, Camp Jened, was featured in the 2020 Netflix documentary Crip Camp.)

***

Judy was the first person from her Health Conservation 21 program to go to high school, and that happened only because Ilse and some of the other mothers pressured the school district to make a number of schools in each borough wheelchair accessible. 

However, it wasn’t easy — getting to high school again involved a daily hour-and-a-half bus ride to and from home. As well, she was dependent on others at school, having to “ask for favors” to get from class to class or go to the bathroom.  

She worked hard and was very successful academically. But exclusion remained a constant companion — for example, at her graduation ceremony, where she received an award, the stage was inaccessible to her, a wheelchair user.  

Judy’s parents encouraged her to go to college, despite neither of them having gone nor it being usual for females in the sixties to pursue higher education. 

She was accepted to Long Island University. Although she wanted to become a teacher, to access funding to support her education, she had to study a course considered “acceptable” by the Office of Vocational Rehabilitation. Because of fixed views on what were realistic careers for disabled people, she studied speech therapy but took a minor in education to allow her to have enough credits to become a teacher. 

Living on campus, Judy was again dependent on others for help. She grew close to other disabled students, and together they discussed many issues including wanting to make the university more accessible: 

We did not see our issue as a medical problem that, if we just “fixed” it, would be fine. We were beginning to see our lack of access as a problem with society, rather than our individual problem. From our perspective, disability was something that could happen to anyone at any time, and frequently did, so it was right for society to design its infrastructure and systems around this fact of life. We had grown up with the civil rights movement. 

Her campus activities fueled her confidence and she became more interested in politics. She ran for student council and won, and also got involved in the antiwar movement. 

Once she finished college, Judy hit a major obstacle. She passed the oral and written exams for her teaching license but failed the medical. The reason given for her failing was that she couldn’t walk, which in the opinion of the New York City Board of Education meant she was “a danger to children,” and thus unable to teach.  

Judy had to decide whether she would fight the board’s decision. On one hand, she felt insecure and uncertain, but on the other, she felt a responsibility to fight not only for herself but for other disabled people. She says that was the first time she was faced with the decision to stand up for herself for the right to do something. 

She contacted the American Civil Liberties Union (ACLU) for help, but they deemed there had been no discrimination. Judy had no recourse as disability wasn’t covered under the Civil Rights Act of 1964, which addressed discrimination on the basis of race, color, religion, and national origin — but not disability. And at that time, there were no disability rights organizations. 

ACLU’s response galvanized Judy into deciding to fight the Board of Education — a daunting prospect. 

Using her problem-solving skills learned from an early age, Judy first strategized how to get publicity for the wrong. She contacted a disabled friend, a journalism major, who helped get an article and editorial published in The New York Times. Two lawyers then volunteered to help fight the case. More publicity followed, including one newspaper article with the headline “You Can Be President, Not Teacher, with Polio” (alluding to Franklin D. Roosevelt, who used a wheelchair). 

Judy has described that time as like a dam having broken. She was energized by working with like-minded people who recognized that, by working together, things can happen — change can happen. 

The case went ahead, and the New York City Board of Education settled out of court. Judy was awarded her teaching license. 

A teaching license isn’t a teaching job, however. No school would hire her, and many schools were still inaccessible. As well, Judy suspected discrimination and the publicity surrounding the court case might be at play. 

Eventually she got a job in her old school working with both the disabled and nondisabled kids. For the students it was the first time they had a teacher with a disability. Judy taught there for three years from 1970 to 1973. 

***

Slowly, change was happening. 

As a result of the court case, the State of New York passed legislation to allow blind people and people with a physical disability to become teachers.  

Activism was also beginning. 

In 1970, Judy and friends (including some from Camp Jened) formed a civil rights organization, initially called Handicapped in Action but soon after renamed Disabled in Action. Judy was its first president. Together they took on the fight for Section 504 of the Rehabilitation Act (the Rehab Bill). 

Section 504 was one of the first pieces of federal legislation offering protection for people with disabilities. It applied to institutions receiving federal money such as transportation, hospitals, and education. President Nixon vetoed the legislation by allowing it to sit unsigned, arguing it would cost too much to implement. In response, in 1972, Disabled in Action organized a protest in New York to draw attention to this delay. One afternoon, about fifty people stopped the traffic on Madison Avenue and managed to shut down the city. 

In 1973, Judy moved from New York to work at the Center for Independent Living in Berkeley, California. The novel center was run by disabled people for disabled people, to help them live independently. There, Judy herself got to experience “independent living” and flourished in her new life. She benefited from the financial support the State of California offered disabled people to hire personal assistants, meaning she wasn’t dependent on roommates and friends as she had been in New York. While there, she completed a master’s in public health at UC Berkeley. 

Roughly a year later, Judy was on the move again, this time to Washington, D.C., to work as legislative assistant in Senator Harrison Williams’s office. Williams was a champion of disability issues, and Judy got to work with the team on Section 504, as well as on what would eventually become the Individuals with Disabilities Education Act (IDEA). In 1975, Judy returned to Berkeley as deputy director of the Center for Independent Living, where she worked for seven years. 

***

Eventually in 1973, President Nixon signed the Rehab Bill, including Section 504, but it still needed enabling regulations to be enforced. The Department of Health, Education, and Welfare (HEW) was responsible for drafting those. In 1974, Judy helped cofound the American Coalition of Citizens with Disabilities to track the progress of Section 504. The Coalition became the first national cross-disability rights organization run by and for people with disabilities. 

During President Ford’s administration, HEW drafted the enabling regulations and issued them for comment. Once institutions realized the implications of Section 504, particularly the cost, they organized for lobbyists to pressure the government. Delay ensued.  

In 1977, Jimmy Carter, now president, promised that his HEW secretary, Joseph Califano, would sign the enabling regulations. Califano delayed again. 

With the latest stall, the American Coalition of Citizens with Disabilities issued an ultimatum: if the regulations were not signed by April 5, 1977, there would be demonstrations across the country. That date came, the regulations were still unsigned, and demonstrations were held at HEW offices in ten U.S. cities. 

Judy was in charge of planning the San Francisco demonstration. A protest was held outside the San Francisco Federal Building at 50 United Nations Plaza. Later that day, a large group of disabled people entered the building and went to the HEW office, which was on the fourth floor. There they began a sit-in that lasted almost a month. 

Keeping the sit-in going involved massive organization — many of the disabled occupants had complex medical needs. Committees were formed to look after media, food, and medical and other supplies. Those inside were supported by the broader community outside who supported their fight for rights. When communications to the building were cut off, deaf people signed messages to the crowds outside. 

Roughly halfway into the sit-in, a delegation from San Francisco, including Judy, went to Washington, D.C., where meetings, protests, and candlelight vigils were held. Judy and one other person remained in Washington until the regulations were signed, which eventually happened on April 28. Finally, disability had been redefined — from being regarded as a medical issue to being a question of civil and human rights. 

***

After Section 504 was enforced, international visitors began coming to the Center for Independent Living — to learn about the work it was doing. Judy also traveled abroad to develop an understanding of the disability experience internationally. That led her, with two colleagues, to found the World Institute on Disability in California. She worked there for ten years until 1993. 

Meanwhile, domestic work continued. Section 504 covered only the public sector, and similar legislation was needed in the private sector. Over a number of years, legislation was developed, passed in the Senate, but got stuck in committees in the House of Representatives. In response, a protest was organized in Washington. Disabled people climbed the eighty-three steps to reach the Capitol’s main entrance, by means they could, some dragging themselves inch by inch. 

Their action brought the delay into focus, and four months later the 1990 Americans with Disabilities Act (ADA) was signed into law, twenty-six years after the 1964 Civil Rights Act had passed. Finally, discrimination on the grounds of disability was now illegal in both the public and private sectors — people with disabilities were only now getting their civil rights. 

***

In 1993, President Clinton appointed Judy as Assistant Secretary in the Office of Special Education and Rehabilitative Services in the Department of Education (OSERS). With a staff of about four hundred and a budget of $10 billion, she became the highest ranking disabled person in the U.S. government. 

When President Clinton left office, Judy took up a role at the World Bank until she went to work for President Obama as Special Advisor for International Disability Rights. During his first term, Obama signed the United Nations Convention on the Rights for People with Disabilities. Though efforts were made to ratify this treaty, to date it still has not happened. Judy says, “I’m hopeful, but hopeful for when, I don’t know.”  

Judy now works independently and remains very involved in many areas of international disability activism. She is a mentor to many, a public speaker much in demand (her 2016 TED Talk has been viewed over a million times), a networker, and a member of several boards, including CommunicationFIRST, a nonprofit to help those who cannot speak.  

“I am not the retiring type, and there’s still so much work to do,” she says. “I enjoy what I’m doing, I enjoy meeting people. I enjoy being able to work on improving things which can benefit me and others. For me, this is never a job. I got engaged from the time I started experiencing discrimination, and since I and millions of other people still experience discrimination, I don’t think about retiring.” 

***

Sadly, Judy’s work was done on March 4. Suaimhneas síoraí Judy. 

Judy’s full story can be read in Pure Grit and all book proceeds go to physical disability research.