Thank You, Judy Heumann
Neurodiversity Pathways
Helping neurodiverse adults with college degrees find meaningful, rewarding, and sustained employment.
I was saddened to learn of the death this week of Judy Heumann , known as the 'mother of the disability rights movement '. I wasn't alone.
Upon the news, testimonies to Judy came from across the world. This included the White House.
"Judy Heumann was a trailblazer - a rolling warrior - for disability rights in America," said President Joe Biden . "I knew Judy for a long time. When I was Vice President, we hosted a meeting together at the White House to discuss our continued efforts to break down barriers for those who face discrimination and neglect. Her legacy is an inspiration to all Americans, including many talented public servants with disabilities in my Administration."
However, my emotions at the passing of Judy Heumann did not end in sadness. Upon her death, I also found myself grateful and joyous when thinking of the millions of lives now enriched thanks to the dutiful work and advocacy undertaken by Judy throughout her life.
My thankfulness for Judy is nothing new. Last June, I wrote of how I loved to celebrate what I call 'Judy Day' with my students at Neurodiversity Pathways.
Although the day is officially listed as ‘Employment Self Advocacy’ in my lesson plan, to me it’s always ‘Judy Day’. It’s the day I discuss with my neurodivergent students the history of the 504 sit-ins, a nationwide disability rights protest led by Judy Heumann, Frank Bowe, and other disabled Americans in 1977.
If you’re not familiar with the 504 Sit-ins, the event is considered a crucial flashpoint in the disability rights movement and the development of disabled culture. Although Section 504 of the Rehabilitation Act of 1973 forbade discrimination in federal programs on the basis of disability, the regulations required to enforce this law remained undrafted and subsequently unsigned for years.
The status quo needed to be shaken. That's where Judy rolled in.
In early 1977, disability advocates lobbied the federal Department of Health, Education, and Welfare (HEW) to sign the regulations necessary to enforce the Section 504 of the Rehabilitation Act of 1973 and demanded that the Secretary of HEW do so by April 4th of that year.
When April 04, 1977, passed without the Secretary of HEW signing the 504 regulations into law, disability advocates began to demonstrate at HEW offices across the country. Although most protests at HEW offices lasted approximately one day, the protest at the HEW office in San Francisco and led by Judy Heumann and Kitty Cone lasted for a full 25 days.
During this time, disabled people occupied the HEW office in the San Francisco Federal Building along with allies. This effort gained media attention from across the country and set in motion a series of events that pressured the Secretary of HEW to finally sign the 504 Regulations on April 28, 1977.
Comedy Central has a terrific episode of ‘Drunk History’ which tells the story above in a much more entertaining way .
My colleagues Khushboo Chabria , Ranga Jayaraman , and myself spend a lot of time discussing the concept of self-advocacy with our students at Neurodiversity Pathways. Self-advocacy is a concept developed in the disability community and refers to the ability of an individual to communicate their needs. Historically, disabled people have often been spoken for. Self-advocacy is a frame that disabled people can use to speak for themselves.
I use 'Judy Day' to expand on this discussion by introducing the concept of disability community.
Building upon lessons of self-advocacy, 'Judy Day' is used to demonstrate how self-advocacy and disability culture work together to support the individual. Advocating for oneself becomes easier when one understands that there are entire communities of people out there to provide you support.
It's hard enough for a neurodivergent person to navigate the hiring process and workplace dynamics. Not all of us have the ability to lobby Congress, to fight for legal protections in the courts, or to make the case for disabled equality on television programs or news networks. Advocates like Judy Heumann have done that hard work, so that many other disabled people can focus more on simply living their lives. To put it plainly, ‘Judy Day’ helps demonstrate to our students that they are not alone.
The Judy on My Bus
I was fortunate to know Judy Heumann as both an icon and as a person.
Although I had long understood Judy Heumann as a disability rights icon, I had never put a face with her name. I knew Judy Heumann from text books and news articles. It wasn't until 2010 that I found myself riding a bus to work most days with Judy Heumann herself.
In 2009, I had been appointed by President Obama to serve at the U.S. Office of Personnel Management and it was in 2010 that President Obama appointed Heumann to serve as Special Advisor on International Disability Rights at the U.S. Department of State.
Most weekday mornings, I would say hello to Judy as we waited outside our local coffee shop in Washington, DC for our daily bus to work. Aboard, we would sometimes talk, but mostly read our phones in preparation for the day ahead. When Judy would get off at the State Department bus stop, I'd wave goodbye as I continued to ride the extra three blocks to my own office in Foggy Bottom.
This scene happened again-and-again-and-again.
It was several years later when I took a different bus after work to meet friends in Washington, DC's Chinatown. As our bus drove past the Smithsonian American Art Museum, my neck snapped in shock when I saw 'Judy from my bus' painted as a two-story mural upon the steps of the museum.
I rang the bell to stop the bus and quickly got off to walk up to the mural. It was there that I saw painted next to to the image of 'Judy from my bus' a quote from Judy Heumann the icon which read "Disability only becomes a tragedy when society fails to provide the things we need to live our lives."
I was astonished.
The next time I saw Judy outside our local coffee shop waiting for our morning bus, I rushed up to her and yelled-out "I knew you were Judy! But, I didn't know that you were Judy Heumann!"
I think I may have scared her, but she was gracious. And, I thanked her for everything that she had done.
I would tell that story again-and-again whenever I ran into Judy at meetings or advocacy events. She always smiled through it, and others were astonished that it took me so long to realize that both 'Judys' were - in fact - the same person. However, that sets up the next point about Judy that I want to make sure that I make.
The Power in Ordinary
Knowing that Judy Heumann the icon was also just the everyday Judy that I saw each morning on my bus says a lot about the power of being an ordinary person. Humans are more alike than dissimilar. Certainly figures like Albert Einstein, Aretha Franklin, or Frida Kahlo held talents which they used to shape our modern world. There is no denying that. Yet, these figures were more like you and I in their everyday lives than they were different. Indeed, every piece of art, every scientific discovery, every new understanding through all of human history, has been the product of ordinary people like you and me.
I often say that "disabled people are just as boring and normal as anyone else". What I mean by that is that there is nothing extraordinary about disability. It's just a fact of life.
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Can disability be hard? Yes. But, life is hard for many people in lots of different ways. There are lots of non-disabled people who struggle, or even suffer, through life. Can living a life with disability be different than what most people familiar with? Of course, it can. However, difference is an inherent part of being human. No two of us are alike.
A corn farmer in Iowa and a fashion designer in France may lead lives which appear radically different, but they are two ordinary lives all the same. Neither difference nor disability makes someone special. That's just life.
So, there's no reason to treat disability (or disabled people) as anything out of the ordinary. Disabled people are ordinary people. Yet, in recalling Einstein, Franklin, Kahlo, and Heumann, we are reminded of how ordinary people can do extraordinary things. Judy understood this. It's a lesson we should learn too.
No One is Alone
The memorial service for Judy Heumann was held on March 8th , which was also International Women's Day. Whether this scheduling by the organizers was intentional or not, that date was apt for a service celebrating her life.
"I'm a very big believer in that the disability rights movement cannot stand on its own," Heumann once told PBS. "We need to be working with all other (civil rights) movements, and we want all other movements to be inclusive of disabled people."
Ordinary people can do extraordinary things, but acting alone we can only do so much. Collectively, we can do even more.
I was reminded of Judy's quote above on the day of her memorial service. It ended up energizing and motivating me during an unexpectedly difficult moment in my own life.
Last week, I wrote of how I was stabbed and left for dead less than two weeks ago while on a trip in a foreign country. After being released from the hospital, I spent the following 10 days resting and recuperating from my injuries in a sleepy, rural town. It was the rest I needed. However, I was required this week to return to the large city in which I was stabbed to finish some paperwork with the authorities before flying back home to the United States.
During this time, my friends and colleagues had reached out for support (thank you to all that did!), and I have been in contact with my therapist and medical doctor. I was connected with people, which made a huge difference in my recovery. However, being alone on a foreign trip meant that the experience of navigating the medical and legal system of a foreign country was something that I inherently had to do alone.
Part of that lonely process was returning to the location where I was attacked. It was necessary to gather information and to talk with potential witnesses in order to provide an accurate accounting to authorities and for insurance reasons. Seeing the stains of my blood still visible upon a public sidewalk well-over a week later, and attempting to overcome language barriers while talking with business owners adjacent to the scene, only reinforced just how lonely of an experience this has been.
Yet, I wasn't alone.
Not five minutes after I had wrapped up the gathering of information, I watched as tens of thousands of women marched by the place where I had been violently stabbed. None of them knew my story, but they were marching against violence all the same.
The day that I returned to the scene of my attack was also the day of Judy Heumann's memorial, and it was International Women's Day as well. Most of these women did not know Judy, and none of these women knew of me, yet it felt connected all the same.
For nearly two hours I watched as these women came marching, rolling by in wheelchairs, and even riding horses, to bring attention to violence. Specifically, they were using International Women's Day to bring attention an upswell in violence in recent years directed towards women in their country. This included a spate of public beatings and stabbings very similar to the one which I had just experienced.
No, I wasn't a woman. Yet, watching this march speak out against violence directed at women again reminded me that I was not alone. None of us are.
The work of Judy Heumann is a reminder that all of our lives intersect. What may seem different, those things which we may not at first understand, are in fact threaded together by our commonality.
As Judy said, "the disability rights movement cannot stand on its own." So, I stood near the scene of the violent crime which targeted me as I thought of that quote. I stood on that corner and clapped and cheered, and gave witness to the tens of thousands of women marching against violence as they passed me by.
The intersection of International Women's Day, and the day of Judy Heumann's memorial, and the day that I returned to the scene of where I was violently attacked was not lost on me. Thanks to lessons which Judy Heumann taught me, all of it was bound up together in my mind. Three separate things, yet in my life they were intertwined.
Watching the march, I began to cry. There were tears of sorrow for the pain that these women were decrying, and there were tears of sadness of the loss of Judy Heumann in our lives. Yet, there were tears of joy which flowed also. And I cried them as I gave thanks to the life and the work of Judy Heumann and for all that she did for me, and for my students, and for disabled people everywhere.
May Her Memory be a Blessing
Upon her death, many across social media recited in English the blessed phrase from Hebrew that states "May her memory be a blessing."
If the blessing provided to us by the memory of Judy Heumann is only half as powerful as the blessing given to us by her life, then our world is indeed very blessed.
"I never had the privilege of meeting Judy in person, wrote Jennifer White-Johnson , the creator of the above illustration of Judy Heumann. "But we were fans of each other from afar and we both cheered each other on. So many of my disabled comrades are impacted by this sudden loss. She made us feel seen and loved."
All humans want to be seen. We all want to be loved. Judy Heumann was seen and loved more-and-more in her life the more she continued to see and love us.
What a blessing we experience thanks to the work of an ordinary person. What a blessing it is to remember Judy Heumann as we go forward to do extraordinary things.
As Judy said, we cannot stand on our own - nor do we need to. We had Judy and we have each other. Judy Heumann saw us and loved us. Let's see and love each other as we go forth. The memory of Judy Heumann is a blessing whenever our actions follow her example. Yes, we might be ordinary people, but together we can do extraordinary things. I am forever grateful to Judy Heumann for teaching us that.
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John Marble is the founder of Pivot Neurodiversity and is a training partner and instructor with Neurodiversity Pathways.
He is autistic.