How the godmother of the disability rights movement changed my life

Like many, when I heard that Judith Heumann died earlier this month, the news took my breath away. I never knew her, but her work changed the course of my life. 

Heumann died on March 4 at age 75. Maybe it’s fitting that the godmother of the U.S. disability rights movement left us during National Disabilities Awareness Month because this fierce advocate devoted her life to fighting for the inclusion of people with disabilities. 

"Change never happens at the pace we think it should,” she said. “It happens over years of people joining together, strategizing, sharing, and pulling all the levers they possibly can. Gradually, excruciatingly slowly, things start to happen, and then, suddenly, seemingly out of the blue, something will tip.”

Heumann founded national and international disability advocacy organizations and was instrumental in developing disability rights legislation, including the Rehabilitation Act, the Individuals with Disabilities Education Act, and the Americans with Disabilities Act (ADA). 

These landmark laws increased access to education, the workplace, housing, and more for people with disabilities. 

Subject of documentary

Her story was one of several featured in the Oscar-nominated documentary Crip Camp. Her life changed when she contracted polio at age 2 and lost the use of her legs. She was turned away from attending school in New York. Instead, a teacher was sent to educate her at home for a few hours a week. 

“Kids with disabilities were considered a hardship, economically and socially. They brought stigma to the family,” she wrote in her memoir, “Being Heumann: An Unrepentant Memoir of a Disability Rights Activist.” 

Heumann credited Crip Camp, where she worked as a counselor in the 1970s, for creating an empowering space that gave her and other future leaders the confidence to become disability advocates. 

While she was denied her first dream of becoming a teacher, she would later go on to work at the World Bank and serve in both the Clinton and Obama administrations. (Former President Barack and Michelle Obama produced the “Crip Camp” documentary.)

Voices and persistence make a difference

If you haven’t seen the documentary or read her book, I recommend both. They helped me really appreciate how much Heumann did to provide opportunities for me and others that weren’t available to previous generations. 

She appeared on my radar as I began my journey as a disability advocate, around 2000, when I was learning about the history of the disability rights movement. I was in awe at how I had never been taught about the disability rights movement. It gave me so much pride and inspiration at learning my people's history. 

Heumann was a mentor I never met. Her life’s work reminds us that our voices and persistence can make a difference. She laid the groundwork for the people of my generation. I grew up most of my life under the protection of the ADA. I was 10 years old when it passed in 1990. Some in the disabled community refer to ourselves as Generation ADA. 

She never quit. Even in her 70s, she was still advocating. I hope I can carry on with her work and pave the way for the next generation. Her message to those of us with disabilities was always that our voices should be heard and we can change things for the better.

I want to share one of my favorite quotes of hers:

"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," she said. "It is not a tragedy to me that I'm living in a wheelchair."

This article is a part of the year-long series Disability Inclusion, exploring the state of West Michigan’s growing disability community. The series is made possible through a partnership with Centers for Independent Living organizations across West Michigan.