Continuing his series on exceptional wheelchair-liberated persons in history, George Louw explores the life of Judy Heumann
Judith Ellen “Judy” Heumann was recognised internationally for her leadership and advocacy for the civic rights of persons with disability. Her work with various governments, NGOs and a variety of disability interest groups contributed significantly to the establishment of legislation and policies on the rights of persons with disability internationally.
Born in 1947 in the Unites States, Judy grew up in Brooklyn, New York. At the age of 18 months, she contracted polio and spent three months in an “iron lung” – a precursor to modern ventilators.
An iron lung was a rather horrible monstrosity that enclosed most of a person’s body and varied the air pressure in the enclosed space to stimulate breathing. It assisted with breathing when muscle control is lost, as happened in persons with polio.
Her eventual recovery left Judy as a paraplegic toddler in a wheelchair facing a society without any formal rights for persons with disability – worse still, a society with many preconceived negative notions about disabilities.
Discriminated against from a young age
From early on, Judy and her family were exposed to discrimination. These experiences eventually culminated in the establishment of the Disability Rights Movement. She shares her journey in a 2016 Ted Talk noting: “We had lots of neighbours in our Brooklyn neighbourhood. Some of them were really very helpful for my parents. Some of them were really afraid of contagion.”
“They wouldn’t even walk in front of our house. They would literally walk across the street. I think this was a time when my family really began to realise what disability meant to some people: fear.”
This fear or avoidance of disability was even encouraged by medical practitioners. A doctor advised Judy’s parents to send her to live in an institution when she was two-years old.
“They could just go ahead with their lives and raise their kids and kind of be done with having to deal with all the disability-related things,” Judy shares the advice given to her parents that they thankfully didn’t take.
At age five, her parents tried to enrol her in a school nearby, but she was refused as the building wasn’t accessible. The principal proposed sending a teacher to Judy’s home as a solution.
“He told us not to worry, because the Board of Education in fact would send a teacher to my house,” she recalls the incident. “They did. For a total of two and a half hours a week.”
While Judy was able to eventually join a formal school at age nine, she shared her class with other students with disabilities, despite the school mainly educating students without disabilities. Some of these students were 21 years old.
“And then, after 21, they went to something called sheltered workshops with menial work and earning either nothing or below minimum wage. So I understood discrimination. My parents understood discrimination,” Judy noted in her presentation.
Battles as a young adult
High school would prove to be just as challenging to access. Fortunately, her parents had some experience advocating for their daughter. Rather than allowing their daughter back into home instruction, they challenged the Board of Education.
“None of the high schools in New York City – in the entire city – were wheelchair accessible … So, my parents banded together with other parents. They went to the Board of Education, and they demanded that the Board make some of the high schools accessible.”
“And they did! So, I and many others were finally able to go to high school, a regular high school, and take regular classes,” Judy shared.
“I was learning more and more about what discrimination was, and equally important, I was learning that I needed to become my own advocate.”
Judy enrolled in the Long Island University to qualify as a teacher. When it was time to get her licence, she had to take a written, oral and medical exam.
“At the time, all three of those exams were given in completely inaccessible buildings, so I had friends who carried me up and down the steps for these exams,” she laughingly remembered.
She passed her written and oral exam, but the medical exam proved a challenge. She was ultimately denied her licence because she couldn’t walk. Fortunately, Judy didn’t give up.
“This is a really important time in my life, because it would be the first time that I really would be challenging the system, and although I was working with a lot of other friends who had disabilities who were encouraging me to move forward with this, it was nonetheless quite frightening,” she recalls.
She approached a journalist friend who wrote an article about what happened. Soon after, the New York Times did an editorial piece in support of her getting her licence.
The same day, an attorney contacted her for an interview on civil rights for a book he was writing. By the end of their discussion, he had agreed to represent Judy in her case against the Board of Education. They won the case, and some months later Judy found a job and could finally start teaching.
Activism in action
Due to the press coverage of her lawsuit against the Department of Education, Judy received many letters from persons with disabilities sharing their own experiences of discrimination because of their disabilities.
“I was learning as my friends were, and people I didn’t know around the country, that we had to be our own advocates, that we needed to fight back people’s view that if you had a disability, you needed to be cured, that equality was not part of the equation,” Judy reflects.
“We were learning from the Civil Rights Movement and from the Women’s Rights Movement. And what was born is what we call today the Disability Rights Movement.”
The organisation focused on securing protection for persons with disabilities under civil rights laws, through political protest. Two early versions of a Rehabilitation Act were vetoed by President Richard Nixon in October 1972 and again in March 1973.
The movement retaliated with, among other actions, a sit-in in New York City, protesting one of the vetoes. Led by Judy, 80 activists staged this sit-in on Madison Avenue, stopping traffic. Eventually the Rehabilitation Act of 1973 was promulgated, with emphasis on the needs and rights of persons with disabilities.
She continued her life as an advocate for disability rights, influencing many policies and legislations and organising protest actions such as the sit-in of 1977 when the United States Secretary for Health, Education and Welfare refused to sign meaningful regulations.
Efforts by government officials to terminate the action merely resulted in various organisations and individuals stepping up in support by providing meals and moral support. This became the longest sit-in in a federal building with 125 to 150 people sitting it out for 28 days until eventually the required regulations were signed in April of 1977.
The work of the movement is beautifully documented in the Crip Camp: A Disability Revolution documentary available on Netflix.
Judy was asked to move to California to work for the Centre for Independent Living, where she served as deputy director from 1975 to 1982.
She was an early proponent of the Independent Living Movement and was responsible for the implementation of federal legislation for programmes in special education, disability research, vocational rehabilitation, and independent living, serving more than eight million youth and adults with disabilities.
For the rest of her active life Judy co-founded the World Institute on Disability, served in the Department of Disability Services in Washington, and served under the Clinton Administration as Assistant Secretary of the Office of Special Education and Rehabilitation Services.
From 2002 to 2006, Judy served as the World Bank’s first advisor on disability and development. She served as special advisor in various capacities.
She wrote a book in 2020, Being Heumann: An Unrepentant Memoir of a Disability Rights Activist, and she started a podcast in 2021, The Heumann Perspective, where she spoke with change-makers with disabilities and their allies.
Judy married Jorge Pineda in 1992. They lived in Washington. She passed away there on March 4, 2023, at age 75. She was a truly remarkable woman who opened new frontiers for the disability community. Rest in peace Judy after a life well lived.
