Make the Fuss

In April 2022, I wrote an article about a humiliating experience that opened my eyes to the meaning of the word disability. My husband and I brought our girls to Pauley Pavilion at UCLA to cheer on the UCLA Women’s Gymnastics team and my 8-year daughter Sadie was ushered to the balcony section because she uses a wheelchair. We purchased tickets in advance and the website did not display accessible seats (because there were none) so we paid full price for great seats hoping there would be a suitable option when we arrived. Sadie and I were directed to sit in the balcony behind the marching band with no view of the gymnasts. It was disappointing and embarrassing for the whole family.

I went home fuming and decided to go for a long walk and get lost in an audiobook. I flipped through Audible and came across a memoir called Being Heumann by a disability rights activist named Judy Heumann. Just what I needed. I walked for countless miles that day, mesmerized by Judy. I became an instant fan and as I type, my eyes fill with tears because, yesterday, Judy Heumann passed away. The world lost a legend.

I had the incredible honor of getting to know Judy personally and regret not having more conversations because Judy had so much to teach me. This morning, I connected with my friend, fellow parent of a disabled child, and author Kelley Coleman, who also knew Judy. We mourned and shared a feeling of trepidation. Judy is no longer here, it’s on us to carry on the fight. We have gargantuan shoes to fill.

Disability is Not Tragic

Having contracted polio at age two, Judy was a wheelchair user and fought her entire life against a society that erected barriers against disabled people. When Judy was in second grade, the NYC Board of Education decided she was not allowed to attend public school because her wheelchair was a fire hazard. They offered to send a teacher to Judy’s home instead and did so, twice a week for two hours.

The NYC Board of Education assumed Judy Heumann was not worthy of an education because her legs didn’t work. This story exemplifies the meaning of the word disability. Judy was disabled by the Board of Ed, not by polio. If proper accommodations were made, Judy would have attended school, made friends, and received an education along with her same aged peers. When asked to explain disability, Judy shared in her memoir:

“Disability only becomes a tragedy when society fails to provide the things we need to lead our lives — job opportunities or barrier-free buildings, for example, it’s not a tragedy to me that I’m living in a wheelchair.”

Judy went on to earn a teaching degree at Long Island University and after an arduous and ridiculous fight with the Board of Education, in 1970, she became the first wheelchair-bound teacher in New York State. Six years later, she earned a master’s degree in public policy at Berkeley and served in two presidential administrations. Judy is widely regarded as the mother of the disability movement, guiding national disability rights legislation, including Section 504, the Individuals with Disabilities Education Act, the Americans with Disabilities Act (ADA), the Rehabilitation Act, and the UN Convention on the Rights of Persons with Disabilities.

The impact Judy’s bravery and tenacity had on disabled people in this country is comparable in magnitude to Dr. Martin Luther King’s influence on the passage of the Civil Rights Act in 1964 and Voting Rights Act in 1965. At the time, 11% of the US population was known to be disabled. In 2023, the CDC reports that 1 in 4 Americans live with a disability.

The fight to get the ADA enacted lasted for 26 years after the Civil Rights Act was passed. “We are not the ones that need to change” was the spirit of the law. The ADA argued that one’s inability to walk isn’t what holds them back, it’s the stairs they cannot climb or the curb they cannot maneuver a wheelchair over. In 1990, President George H Bush signed the ADA (Americans with Disability Act) into law, giving disabled people equal rights. In 2008, President George W Bush broadened the definition of disability, making the law applicable to more people.

Non-Disabled vs Able-Bodied

Trevor Noah invited Judy Heumann to be a guest on The Daily Show and remarked that as an able-bodied person he takes for granted the presence of ramps, curb cuts, and elevators. Judy explained to Trevor that she considers him to be “non-disabled” not able-bodied. Statistically speaking, there is a high likelihood that Trevor will acquire a disability (temporary or permanent) in his lifetime. The word able-bodied implies a permanent condition and the thing is, every human body is susceptible to injury and illness. Being able to walk, turn a door knob, speak, eat with your mouth, and sustain loud noises is not a lifelong guarantee.

Measurably Annoying

Reading Judy’s memoir Being Heumann changed my perspective about Sadie’s disability and it gave a much needed jolt of confidence that I could do something to fix the problem at UCLA. Thanks to her encouragement on a zoom that I will always remember (and wish I recorded), I started writing to every contact I could find in the UCLA Athletics Department. After a few tries, I received a response and had an opportunity to explain the problem and propose a solution. Things moved too slowly for my taste, so I followed up monthly and then weekly to inquire about decisions and progress. It turns out being annoying can really pay off.

Today, we returned to Pauley Pavilion for our first gymnastics meet of the season. As I mourn the loss of the person who gave me the nudge I needed to become an “irritant”, I am elated to report that the fight worked.

The UCLA ticketing website has been updated to clearly display ADA seats and there are seat options beyond the balcony. We bought 4 floor seats and Sadie got to have the experience she was supposed to have last year. The best sight for me was that the ADA section was full! There were three other families in our row, one with a little girl just like Sadie in a wheelchair, decked out in UCLA gear. Olympic gold medalist and UCLA gymnast Jordan Chiles came over to the girls and gave them high fives. The Bruin mascot offered hugs. It was a magical day that reminded me of the importance of advocacy. Sadie got to be a fan just like other spectators. She got to feel totally included. She didn’t feel disabled.

Judyism

Thank you, Judy Heumann. Thank you for showing me how to be an advocate and ally. Thank you for redefining the word disability in a way that is optimistic and dignified. Disability does not have to exist if we don’t want it to.

I’ll conclude this tribute with one of my favorite Judy quotes. When asked how she thinks about her legacy, Judy explained:

“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.”

Rest in power, Judy.

Special Thanks

Thanks to Keely Cat-Wells and her extraordinary team at C Talent. They are carrying on Judy’s fight for accessibility and equality and making remarkable progress. It’s an honor to support your work.

Resources

Judy’s Memoir Being Heumann

Judy’s Memoir for Kids Rolling Warrior

Judy’s podcast Heumann Perspective

Academy Award nominated documentary Crip Camp

Judy’s TED talk

Judy’s website

Judy’s memorial service