Judy Heumann: disability rights, advocacy and her legacy

Over the past weekend, Judith Heumann died, aged 75. For many disabled people in the United States, she was the mother of the disability rights movement, instigating a revolution that made society more inclusive and accessible. But for many of us in Australia, we were never taught about her impact—even though it was tangibly felt here too.

As such, we want to pay tribute to the remarkable Judy Heumann in today’s post, exploring her story and messages. Just as importantly, we want to look at the tools she used to fight for better rights and why it’s imperative that we continue to do the same.  

After contracting polio as a toddler in the late 1940s, Judy Heumann first experienced discrimination when she was denied entry in kindergarten at her local public school. The principal argued that Heumann, who used a wheelchair for her everyday mobility, was a ‘fire hazard’. She was subsequently home-schooled until the age of 9, when her mum, Ilse, successfully lobbied for her enrolment. Even then, Heumann says she was still treated as a second-class citizen at school, given a classroom in the basement with other students with disability.

When she graduated, she sought to obtain her teaching license. However, she would be denied after being failed on her medical exam—despite passing her oral and written exams. One of the questions, she recounted in her Ted Talk (see below), was around how she goes to the toilet. She would sue the New York City’s board of education and win, becoming New York City’s first wheelchair-using teacher. Coincidentally, her first post was at the school she was denied entry as a child.  

But this was only beginning. Perhaps her defining moment was in 1977 as an organiser of the 28-day sit-in at a San Francisco federal building, where she and others protested the government’s failure to implement regulations from the 1973 Rehabilitation Act. (A big thing that would prevent discrimination against people with disability.) This and other advocacy paved the way for the Americans with Disabilities Act (ADA) in 1990 and the UN Convention on the Rights of Persons with Disabilities.

Her career would include positions in both the Clinton and Obama administrations and numerous not-for-profit boards, advocacy groups, and research bodies.

Heumann experienced varying forms of discrimination growing up and did as much as she could throughout her life to ensure her government legislated against it. This included the Americans with Disabilities Act (ADA), which is implemented by the Civil Rights Division of the U.S. Department of Justice. Basically, the Division enforces laws that protect the rights of all people, including those with disability. Before this, there was nothing stopping a school from saying no to a student if they used a wheelchair, or an employer saying no to a potential employee.

Despite living in the United States, her protesting and advocacy work would influence many more countries and how they moved to prevent discrimination in society. The fact that people with disability can go to mainstream school or find employment? We owe a lot of that to her.

But above all else, Heumann recognised that people with disability need to be their own advocates. This speaks strongly to the ‘choice and control’ we hear all the time with the National Disability Insurance Scheme (NDIS). She gave us a platform to be heard, but also reminded us that we had every right to fight for what we were entitled to.  

Judy Heumann gave this spectacular Ted Talk a few years ago, where she shares her first forays into disability rights activism and how we can continue to do more:

She also featured in Crip Camp, which chronicled Camp Jened, a summer camp for disabled people in the Catskills that ran between 1951 and 1977. Many of its campers, including Heumann, would become leaders of the disability right movement. You can watch it on Netflix:

Through such media, Heumann will continue to be a voice for a more accessible and inclusive society. It’s now up to us to ensure her work continues to be done.