Judy Heumann, who led the fight for disability rights in the U.S., died this past Saturday.
Over time, she saw a revolution occur in state and Federal government involvement in the lives of disabled people such as herself. And she, as much as anyone else, helped bring about that revolution.
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Judy Heumann, center wheelchair, is applauded after being sworn in as U.S. Assistant Secretary for Special Education and Rehabilitative Services in Berkeley, California by Judge Gail Bereola, in wheelchair to the left. In the back, to the left, then-Berkeley Mayor Loni Hancock and sign language interpreter Joseph Quinn. In the wheelchair to the right is Julie Weissman, Judy’s close colleague who would lead California’s Inclusive Community Resources center (photo taken June 1993)
8 MARCH 2023 — We live in a world where much of our news is concentrated on our divisions, concentrated on our horrors. We lose track, too easily, of our common humanity – and mind you this is coming from somebody who you (proudly) know as a cynic, and now curmudgeon.
When I think about the forces shaping modern society, I tend to characterize them as centrifugal rather than centripetal forces, which is to say that these forces tend to pull us apart rather than bring us together. When I consider the forces operating on the person, however, a different frame comes to mind. These I think of as forces which deplete rather than renew us. As I have noted time and time again, the arc of digital culture bends toward exhaustion.
What I mean by this is simple: when we think of the way our days are structured, the kinds of activities most readily on offer, the mode of relating to the world we are encouraged to adopt, etc. – in each case we are more likely to find ourselves spent rather than sustained. The default set of experiences on offer to us are more likely to leave us feeling drained and depleted rather than satisfied and renewed. In our consumption, we are consumed.
There are many ways to think about this. We are depleted by the pace and structure of contemporary life, particularly by how spatial and temporal boundaries that provided modest respites from the demands others could place on us have been eroded by the capacities of digital technology. Now we are always on and always available, our freneticism masquerading as flexibility. We are also depleted by our media ecosystem, which, if we let it, will overwhelm us with cognitive and emotional stimuli. We are depleted, too, by a techno-economic system that is bent on treating the human and the non-human alike as raw material, as sites of extraction.
I am trying to sum it all up in an essay-in-progress “The human-built world is simply not built for humans“.
And so often it is due to the fact many of us are just “commerce monkeys, commerce machines” (not my turn of phrase; observed years ago by a long time reader) – driven by this techno-economic system with barely enough time to read and write and produce for your jobs. Time for altruistic work? No way! Oh, we think we are making sacrifices – but we are not. And, yes, that is a blanket statement. It does not apply to all of you. I know that. But it does apply to most of us.
But Judy Heumann would have put all of us all to shame. I want to quote a few paragraphs from her obituary which appeared in the New York Times over the weekend. It is behind the Times paywall but I uploaded the full article it to my Slideshare which you can access by clicking here:
Judy Heumann, who spent decades attacking a political establishment indifferent to the rights of disabled people and won one fight after another, ultimately joining and reforming the very establishment she once inveighed against, died on Saturday in Washington, D.C. She was 75.
A quadriplegic since childhood, Ms. Heumann (pronounced human) began her career in activism waging a one-woman battle to be allowed to work as a teacher in New York City when discrimination against disabled people was not widely understood as a problem. She passed every requirement except a physical and was denied a position, with the cited cause being “paralysis of both lower extremities.” Regulations stipulated that teachers must not have physical issues that prevented them from moving on stairs quickly or from escorting students out of school in case of an emergency.
Within a few months, Ms. Heumann won her license — becoming New York City’s first teacher in a wheelchair.
Over time, she saw a revolution occur in the government’s involvement in the lives of disabled people such as herself. And she, as much as anyone else, helped bring about that revolution”.
The New York Times piece does a very good job reciting her life. Please read it. You will be amazed at the challenges she faced and overcame, and the monumental work she accomplished, all of the lives she improved. I think you will come away with the same thought. We think we work hard, we think we face challenges, we think we make sacrifices. Compared to Judy, we do not.
I met Judy years ago when I lived in NYC (I had a disabled family member and I was working on a disability legal case), but we fell out of touch – to my great regret. But I have learned so much about her from her friends’ blogs. One noted:
Since I first learned about Judy and worked with her, I’ve been baffled and mesmerized by her unwavering belief that she belonged, mostly because I’ve always struggled to believe that I do. Judy became disabled by polio around the same age I became disabled by childhood cancer – both of us as toddlers. But raised in 1950s Brooklyn, Judy grew up in a world that never expected her to join it. When her mother hoisted Judy up the staircase to their neighborhood school in her wheelchair, Judy wearing her first-day-of-school dress, the administrator told her Judy couldn’t be a student there; she was a fire hazard.
After a long fight, Judy was allowed into a public-school basement classroom with a group of other disabled kids ages 9 to 21. They did worksheets, took naps at their desks, and, if they made it to graduation, were expected to go work in a sheltered workshop. It was like the world handed Judy the script for the story we’re all playing out together, assigning her to the role of helpless cripple, relegated to the margins.
Judy simply glanced at the script – then set it on fire. She seemed to know in her bones that she deserved to be included. Disability is not an inherent tragedy or broken version of a whole life, but another form of human variation. Even as a child, she lived in a story of her own making, and she expected the world to bend to it, not the other way around. What kind of human comes into the world with that kind of audacity?
Another friend and co-worker noted:
I grew up in 1990s Kansas. I was able to go to school with my peers. There were curb cuts, accessible parking spaces, and a ramp up to the library. Still, I struggled to believe I belonged. One of my earliest memories is a school party at a roller-skating rink. I’d just gotten my first wheelchair. It was hot pink, and I was proud. The space was dark with neon lights. The music was loud. And my dad was arguing with the staff. His nostrils flared as he insisted it was perfectly safe to take me out on the rink in my chair. They insisted it wasn’t. We didn’t have to leave the party; we just couldn’t participate. Of course we left. I felt silly for ever assuming I belonged there too.
I learned to avoid occasions for sideline inclusion. When my class went on a field trip to an outdoor day camp, I stayed home. I was the first-chair flute player in middle school, but when everyone joined the marching band in high school, I quit the flute entirely. Despite my flair for the dramatic, I wouldn’t even think of trying out for a school play; of course the stage was inaccessible. In retrospect, I could have insisted they find a way to include me. But even now, I know how much easier it is to retreat – to avoid the stares or the eye rolls or the awkward workarounds and just stay home. Even today, it can be difficult to hold onto a story that you belong here as a disabled person. But Judy gave us all purpose, all strength.
Judy was a pioneering trailblazer for everyone in the disability community – a real-life heroine who insisted on justice and fair treatment for herself and millions of others. She was the driving force in the passage of the Americans With Disabilities Act and so much other legislation and funding.
I read her inspiring memoir “Being Heumann, An Unrepentant Memoir of a Disability Rights Activist” and strongly recommend it. The courage she demonstrated in the face of blatant discrimination is nothing short of awe inspiring. People saw a woman in a wheelchair – and they made assumptions about her, assumptions which turned out to be entirely unfounded. As she pointed out more than once, it wasn’t needing a wheelchair that hindered her possibilities – it was the low expectations society had for people who lived life with a disability. That – coupled with the lack of accessibility to streets, buildings, schools, stores – was the enemy to be vanquished. And to a remarkable degree, vanquish it she did.
Judy Heumann in 1982, with Ed Roberts, director of the California State Department of Rehabilitation. They called attention to the Reagan administration’s cutbacks in funds for programs for the disabled. She and Ed got funds reinstated and changes made to the legislation.
Judy was the most human woman I have ever met and I so regret not staying in touch. In her biography she expressed the fact that “people with disabilities are an essential part of the human experience”. She was always inclusive in the most precise meaning of the word. In “Crip Camp” (which she set up for the disabled so they could enjoy summer camp), and while occupying the San Francisco Federal Building (it’s described in the Times piece linked above), she only moved to action with the sanction of every participant. Those who were closer to her say they can only remember her powerful and extraordinary presence while giving you full attention.
Judy Heumann was indeed HUMAN. And she was deeply infused by her Jewish upbringing and identity. During my research on the Holocaust and on Jewish culture, a friend sent me an article about Judy where she cited “Tikkun Olam”, a Jewish sentiment about healing the world as one of her motivators – adding that she feels like Jewish people have a responsibility to be involved in social issues. I think Jewishness did permeate her work and her life, but the New York Times obit doesn’t mention it, nor do any of the other obits I read. I think erasure of Jewishness only serves to flatten the understanding of a person’s background, motivations, and sensibilities.
Judy’s story literally changed the landscape of the world, but the script she set on fire didn’t just disappear. The status quo still carries so much momentum, and rewriting the story of disability for a whole society takes relentless tending and insisting. In 2017, there was a push in Congress to diminish some of the power of the ADA through the so-called ADA Education and Reform Act. People with disabilities experience higher rates of poverty and incarceration, are far less likely to attend college, and are two times as likely to be unemployed as our nondisabled counterparts. One in four Americans adults has some kind of disability, but our lives are rarely represented in film or on television. When stories of disability do appear on screen, they are still often shaped by writers, directors, producers, and actors who do not share that experience, a setup that frequently leads to harmful misrepresentations. Depictions of disabled folks as tragedies, villains, or burdens on their community shape public perceptions of real people. Judy spent her entire life pushing against all of this.
Judy simply astounds me. Her articulate voice, her amazing energy, her amazing strength, her dedication, her true sacrifices, her humanity, and her career legacy have enhanced the lives of generations of kids and adults. She had a truly meaningful life.
Rest easy, dear, incredible lady 👍 ✊️ 👊 💙