When we received the news that lifelong civil rights activist Judith — aka “Judy” — Heumann would participate in the May installment of our Disability Power Series, there maaaay have been some squealing among our Members and staff. One of the most renowned leaders in the disability rights community, Judy has been influential in the passing of several landmark disability policies and laws, including Section 504 of the Rehabilitation Act and the American With Disabilities Act (ADA). To put it simply, without Judy’s perseverance and gumption, those of us with disabilities would not be where we are today.
Judy exemplifies our vision of people with disabilities leading with power and influence, so we were honored to have her speak on Disability Power Series: Film, Memoir, and Heumann Perspectives, our most highly attended virtual event to date. This hour-long discussion led by Disability Lead Member Tuyet Le covered everything from role models to the effects of COVID-19 on the disability community.
In the spirit of sharing our disability perspective, some highlights below:
A BADASS ROLE MODEL
Opening the discussion with a cheeky icebreaker, Tuyet asks Judy: “How did you become such a badass?” After mulling it over, Judy replies, “I think in many ways my mother was a badass.”
When her mother tried to get Judy—then 5 years old—into school, the school denied her the right to go to school, deeming her a fire hazard. She had to be homeschooled through the age of 9 and even then, the admittance was fleeting; she would be expected to return to home instruction for her high school years. This glaring injustice pushed Judy’s mother to organize with other mothers to advocate for deeper inclusion. Succeeding in their efforts, they shattered established norms and Judy was allowed to attend a finally integrated high school.
Beyond showing the roots of Judy’s “badassery,” this anecdote shows that acts of resistance (small or large) help grow the movement and our leadership. We simply do not have to accept the way things are.
THE POWER OF OUR DISABILITY STORIES
Recognizing that sharing disability stories may come with pain, Judy suggests starting slow. “In the privacy of your room, the privacy of your head, start thinking about important parts of your life that you haven’t shared. And you’re talking to yourself, so don’t hide anything!” Then, when you’re ready, try sharing it in a way you’re comfortable with — whether it’s writing it down or talking to family and friends.
The benefits of sharing are far-reaching. “I think in the end, for me at least, it’s an empowering experience. And I feel like many people that I know, when we encourage people to tell their stories, it also makes that person a richer person not only recognizing themselves and being able to say things that they were afraid of saying, but it enriches your friends and your family and people you don’t know.”
The more we share, the stronger our movement becomes. “One of the reasons why our movement has moved forward is because more and more people, when we get together in groups, learn that our experiences are not that unique from other disabled people. We learn from each other and we support each other.”
WE ALL DESERVE RESPECT
Judy talks at length about the value of allowing everyone to show up whole. “In the film Crip Camp, one of the reasons we’re respectful of each other is because we value each other. We knew that it might take someone longer to say something or to process something or whatever it may be, but in the end, it was a contribution that was worth waiting for.”
“People in our community try to keep us all honest. I think as our movement gets stronger, we recognize the importance of everybody’s voice.”
INVISIBLE DISABILITY DISCRIMINATION
After coming forward with her experience of disability identity discrimination from other members of the disability community, an audience member with an invisible disability seeks Judy’s advice on staying positive for the cause.
“Looking at ways of trying to discuss how you’re feeling and how you want things done respectfully is very important,” Judy says, “I also completely understand that you can’t necessarily do something like that on the spot, but I do think it’s a very important [to talk about it] because as our movement becomes more diverse, where numbers of people have disabilities that are not visible. […] people really need to understand how different disabilities impact people […] and in the end, hopefully recognize that alienating people like yourself adversely affects the movement overall.”
Communicating our needs is crucial—even—and especially—within our own communities.
ACCOUNTABILITY AND JUSTICE IN A POST-COVID-19 SOCIETY
One of the many ways COVID-19 has impacted the disability community is its dramatic and fatal spread in group residential settings. Judy says, “Access Living and other disability rights groups […] have long fought against institutionalization for many, many different reasons. And clearly what’s happening right now we’re seeing that we were right: the system needs to change. We need to make sure that people are not living in these residential congregate situations and that workers are getting appropriate salaries so that the jobs they’re performing are respected jobs and can be provided in a meaningful, collaborative way.”
Wrapping up the interview, Judy leaves us with an impassioned plea:
“We need to really be talking amongst ourselves about the systems that we believe need to happen. We have to hold our elected representatives and people running for office accountable.”
In March, Disability Lead, alongside 140+ organizations did this very thing. We signed Access Living’s letter urging Illinois Governor J.B. Pritzker to establish protocols against discriminatory healthcare. Shortly thereafter, Pritzker announced new guidance regarding non-discrimination in emergency healthcare situations. Holding our representatives accountable works.
WANT MORE JUDY?
Watch…
- Crip Camp: A Disability Revolution. This Sundance-Award-Winning Netflix documentary follows Judy from her early years at summer camp to her involvement in one of one of the greatest revolutions in disability history.
Laugh…
- Comedy Central’s hilarious episode of Drunk History on the 504 sit-in. Sometimes history is best served with a dose of levity.
Read…
- Being Heumann Judy’s recently published memoir is available in both print and audiobook format in bookstores everywhere — especially your local bookstore that needs your support now more than ever, like Semicolon or Madison Street Books in Chicago.
Thank you to our Disability Power Series sponsors:
Disruptor: Ann Manikas