The Passing of Judy Heumann
Judith “Judy” Heumann, widely regarded as “the mother of the disability rights movement”, passed away on March 4, 2023. The disability community lost one of its most formidable champions.
If you have not heard Judy Heumann’s name before today, take the time to learn about this extraordinary person. This renowned activist worked tirelessly for decades to secure and protect the rights of the people with disabilities. It is time to recognize the disability community’s continuing struggles for acceptance and inclusion.
How Judy Heumann Learned to Fight
Judy Heumann contracted polio at 18 months old. Because she could not walk, her doctor advised her parents to institutionalize her. That was the status quo for people with disabilities in 1949. Until the 1960s, society’s only answer was to lock people with disabilities away for life in nursing homes or institutions. Families can pretend they don’t exist. But her parents fought for a different path for Judy.
When Judy went to start kindergarten, the principal blocked her from entering the building by labeling her as a fire hazard. Home school was her only option. It consisted of an insufficient two hours of lessons a week. Her tenacious parents fought to get Judy access to a classroom.
In the fourth grade, Judy finally attended a special class for children with disabilities. But the lessons were still minimal. Since no high school was accessible, the policy required her to return to home instruction for high school. Her mother rallied other parents to reverse this policy. Judy entered high school in 1961. She finally started getting a real education.
To Judy, it was not enough just to be allowed in the room. She proved she deserved to be there and be heard. At Long Island University, she organized students to demand ramps to access the classrooms. She received her BA degree. Then she went on to earn her Master’s degree in Public Health.
Judy Refused to Be Excluded
To qualify for a teaching license in New York, the applicant had to pass a written, oral, and medical exam. Judy applied and easily passed both the written and oral exams. The medical exam should have been routine. But for Judy, it wasn’t. The examiner was intrusive and impertinent. She asked Judy to show her how Judy went to the bathroom. Judy was angry and flustered but still completed the medical examination.
Despite a demand for teachers after the post-war baby boom, the New York Board of Education disqualified Judy solely for using a wheelchair. They claimed that a wheelchair user could not help herself or the students in case of a fire. She sued for discrimination. The federal courts saw its first disability civil rights case. Judy became the first teacher in New York state to use a wheelchair.
Judy Heumann Demonstrated the Power of Allies
When Richard Nixon vetoed the 1972 Rehabilitation Act twice, Judy helped lead a protest that shut down traffic in Manhattan. They demonstrated in front of Nixon’s Madison Avenue headquarters four days before the election.
The police could only redirect the rush hour traffic. Some were sympathetic from seeing fellow officers struggle with rehabilitation from recent shootings. They could not arrest the protestors. Their wagons were not accessible to transport wheelchair users.
When the Rehabilitation Act was revived, it still needed the regulations in place to become the first federal civil rights protections act for people with disabilities. However, Joseph Califano, the US Secretary of Health, Education and Welfare, refused to sign Section 504.
In response, Judy staged the largest and longest sit-in at a federal building in US history. There were similar demonstrations in cities across the USA. But those eventually dissipated. However, under Judy’s leadership, the protestors in San Francisco committed to stay for as long as it would take.
To force them out, Califano turned off the water and phones. He refused to allow any meals or medication into the building. But the protestors found allies.
Supporters sent mattresses. People inside and outside the building relayed messages in ASL to each other. Restaurants donated food. The Black Panthers brought food and supplies every night. Supporters held candlelight vigils. After almost a month, Joseph Califano signed both Education of All Handicapped Children and Section 504. The protest ended.
The Fight Continued
But one law was not enough. Judy was instrumental in developing and implementing significant disability rights legislation her entire life. She helped establish the Individuals with Disabilities Education Act and the UN Convention on the Rights of Persons with Disabilities among many others.
When it looked like neither the House or Senate would pass the Americans with Disabilities Act (ADA), people with disabilities from all across the country joined Judy in Washington DC. Many set aside their wheelchairs and assistive aids to crawl up the steps of the Capital. The “Capitol Crawl” visually demonstrated to the world what exclusion looked like. The world took notice. Congress passed the ADA.
Let the shameful walls of exclusion finally come tumbling down.
– President George Bush (when he signed the ADA into law in 1990)
Judy Heumann Blazed a Trail for People with Disabilities
Judy helped launched the Berkley Center for Independent Living, the World Institute on Disability, the Independent Living Movement, and more. Different countries around the world replicated Judy’s model for independent living.
She served on numerous boards including the United States International Council on Disability, the American Association of People with Disabilities, the Disability Rights Education and Defense Fund.
During the Clinton Administration, Judy was the Assistant Secretary of the Office of Special Education and Rehabilitation Services. Judy was the World Bank Group’s first Advisor on Disability and Development.
During the Obama Administration, she was the first Special Advisor for International Disability Rights at the U.S. State Department. She was appointed to be Washington DC’s first Director for the Department on Disability Services. President Joe Biden called her “a rolling warrior for disability rights in America.”
One Person Changed the World
Judy made sure people with disabilities had a voice and representation. Before they met her, many didn’t realize what they were capable of. They didn’t know what they were entitled to. She helped people with disabilities understand their power. But she also showed people how to be powerful allies.
Together, we can make a difference. Together, we can speak up for justice. And together, we can help change the world.
– Judy Heumann (from her TedTalk)
This was a person who was supposed to be institutionalized and forgotten. When told she had nothing to contribute, she proved that she did. When told to sit quietly on the sidelines, she refused.
Judy wrote about it in her memoir, Being Heumann: An Unrepentant Memoir of a Disability Rights Activist. “Some people say that what I did changed the world.” she wrote, “But really, I simply refused to accept what I was told about who I could be. And I was willing to make a fuss about it.”
Does Society Discriminate?
Judy rejected cliches and perceptions about disability as a tragic experience. She once said, “Disability only becomes a tragedy for me when society fails to provide the things we need to lead our lives.”
Many people with disabilities do not feel restricted by their disability. But, they become restricted when they cannot use or access the processes, events, buildings, websites, services, documents, and devices that did not consider them. They are restricted because of how society treats them. They are restricted when requests for accommodations are ignored or dismissed.
Some feel the need to hide their disabilities. They avoid Google forms and products. Some limit what they post to social media. They fear being judged or discriminated against based on their disabilities and not their abilities.
It is vital to allow people the option to self-identify. Let people decide for themselves what they need. And, learn how to create safe inclusive spaces and opportunities so they don’t have to ask.
All the things that were happening – from the most basic of having to get pulled up steps all the time, to not being able to go to school. All these things began to make me realize that, although my parents had expectations that I would be like my brothers, the system itself did not.
– Judy Heumann
Create Inclusion and Access, Not Excuses
Will Judy’s fierce spirit, determination, and clarity of vision motivate the Returned Peace Corps Volunteer (RPCV) community to create meaningful change for people with disabilities?
Whether or not you need the disability accommodation, ask for it. Be an ally. Someone who needs accommodation may not be comfortable or know how to ask for it. But if enough people make the same request, it raises awareness and acceptance. Push people to plan for inclusion from the start. Let’s make sure no one has to give up their dignity and privacy to have to ask to be included!
Will you make sure every video you view have closed captions? For online events, can you request the host chooses a meeting platform with accessible online features? Will you make sure that every posting, document, presentation, newsletter, and email you create or receive contains accessible content? Are you a medical provider who recognizes the needs of the patient and not expect the patient to accommodate you? Can you incorporate inclusion into everything you design and deliver?
Unfortunately, the disability community constantly hear the same excuses. “Not this time but we will look into it for next time.” “We have to get our house in order first before we can think about you.” “Thanks for championing this very important issue, we’ll ask our board/team about it and [never] get back to you.” If this is you, isn’t it long past the time to make a change?
Can the Peace Corps Community Become Leaders in Inclusion and Access?
How can we work together to create a more inclusive and accepting world? As RPCVs, some of us witnessed how different societies treated their members with disabilities. Were they welcomed or were they treated poorly?
Can PCVs raise awareness and inclusion during service? When PCVs lead by example to demonstrate tolerance and acceptance, HCNs take notice. And, PCVs serving with disabilities instantly change the perception of what is possible.
Even within the RPCV community, there are missed opportunities to be inclusive to RPCVs with disabilities. Are you creating inclusive spaces and events for everyone including RPCVs with disabilities? Can RPCVs make sure all our websites are accessible? Are you responsive and respectful when someone ask you for an ADA accommodation? Will you stand up and support the person being discriminated against?
Judy Heumann was a beacon of light in a very dark world for many. Her efforts have fundamentally improved the life of every person with a disability in this country and reached a billion more around the world. But there is so much more to do. Discrimination and exclusion still happens every day. Sometimes it is from lack of awareness. But sometimes it is from intentional disregard.
Let’s make the effort to support people with disabilities in the USA and around the world. The entire Peace Corps community needs to pick up the torch and continue this fight for inclusion and accessibility for all!