The life and legacy of disability rights activist Judy Heumann

Written By Rachel Ross, Co Features/A&E Editor

“There are about one billion people with disabilities: that’s the size of China. But we- you in this room- together, we can make a difference, together, we can speak up for justice, together, we can help change the world.”

These words were delivered by disability rights activist Judy Heumann in a TED Talk she gave in 2016. On March 4, Heumann passed away at the age of 75.

Judy Heumann is widely regarded as “the mother of disability rights,” as stated on her website and in the headline of a 2021 Washington Post article. 

Born in Philadelphia, PA, Heumann and her family moved to Brooklyn when she was a little over a year old. She contracted polio during the epidemic of 1949. She spent three months in an iron lung to stimulate her breathing, after which she had to start using a wheelchair for mobility. At five, Heumann was denied the right to attend school, being labeled as a “fire hazard.”

Heumann described the first time her disability made her feel different in the Academy Award nominated documentary “Crip Camp.” A friend was pushing her wheelchair when they passed a boy playing in the street, who asked if she was sick. Heumann said the question made her want to cry.

“It was an awakening,” Heumann said. “That people saw me not as Judy, but as somebody who was sick.”

Later on, Heumann was further denied a teaching license, despite passing the written and oral assessments, due to her failure to pass the medical exam. Heumann sued the Board of Education and won, becoming the first wheelchair user in New York to be a teacher.  

Heumann went on to have a fruitful career in activism and played a key role in the development of the several legislations aiming to create more accessibility and opportunity for the disabled, including Section 504, the Americans with Disabilities Act, the Individuals with Disabilities Education Act and many more.

Heumann also served in the Clinton Administration from 1993 to 2001 as the Assistant Secretary for the Office of Special Education and Rehabilitative Services in the Department of Education. Further, she was one of the founders of the first grassroots center in the US, the Berkeley Center for Independent Living. The center aimed to break down barriers that stood in the way of disabled individuals living and thriving on their own in the United States, whether through lack of opportunities or lack of accessibility.

“Judy’s work and legacy is truly larger than life.” Kylie Miller, who was Judy’s digital content producer, as well as one of her assistants, wrote in an email to The Globe. “All the things she accomplished, all the places she traveled, all the people she knew, all the stories she had to tell. It’s much larger than can fit in the average person’s lifetime.”

Miller started working for Heumann in 2021. As her digital content producer, Miller was responsible for producing Heumann’s podcast, “The Heumann Perspective,” as well as maintaining her presence online, such as through managing her social media or her website.

“Because Judy’s company was a small team of 3, I also functioned as one of her assistants. This involved helping manage her schedule and emails, as well as traveling with Judy,” Miller wrote.

Miller is still currently working for Judy’s company, helping her family manage project and media requests being made in Heumann’s honor. She will also be publishing the final five episodes of Heumann’s podcast.

“Working with Judy was a very unique job,” Miller wrote. “We worked in her apartment so some days, it really didn’t feel like work. It felt like I was hanging out at Judy’s house.”

Miller is proud of the contributions she made to Heumann’s work, especially her podcast.

“I loved working on The Heumann Perspective and was very proud of it,” Miller wrote. I know Judy was too. We worked together really well. Judy welcomed my ideas and really valued my opinion.”

Beyond working with her professionally, Miller had the opportunity to get to know Judy on a personal level.

“Judy was an extremely vibrant person,” Miller wrote. “She described herself as ‘an extrovert with a capital E’ and I couldn’t agree more. She loved being surrounded by people. Judy loved colors, music, theater, art, and food.”

Miller went on to explain Heumann’s passion and pride for her Jewish culture and how she talked about her parents frequently. Werner and Ilse Heumann were both sent away from their homes in Germany as children when the Nazi regime took over; neither had the opportunity to see their parents again.

Heumann also took pride in the Mexican culture of her husband, Jorge Pineda.. Heumann and Pineda met at a program for a disability rights nonprofit and were married less than a year later.

Along with her deep passion for her culture, Miller described Heumann as “deeply passionate” about her advocacy work.

“She was frequently brought to tears of frustration and disappointment when she and other disabled people continually faced inequality,” Miller wrote.

Miller expressed that one of her favorite things about Heumann was “that she considered everyone a friend.” She explained that Heumann always strived to connect with others on a personal, deep level. “Surface level just wasn’t natural for Judy,” she wrote.

Through this, Miller said she learned a lot about networking during her time working with Heumann.

“Judy put a new meaning to the word ‘networking’ as she would constantly connect people she thought should know each other and work together,” Miller wrote. “I’ve found myself connecting people with each other just like she did, and being more eager to talk with people I might be able to help or vice versa.”

Miller’s hope for the future is that Heumann will continue to gain the recognition she deserves, and that her work will continue to inspire change.

“Judy just started to get the recognition she deserved, but it still was not enough,” Miller wrote. “More people knew her name after her memoir and ‘Crip Camp’ were released in 2020. However, many people still do not know who Judy Heumann was,” Miller said. “Judy’s legacy means changing that narrative by ensuring disability history is taught in schools, bringing disability representation into mainstream media, and continuing to grow the disability community’s pride and power.”

More information about Judy Heumann’s life and legacy is available on her website,, as well as links to her podcast and novels.