While there were many lists of celebrities and other people who died in 2023, there were two very important people whose names I did not see listed; Judy Heumann (1947-2023) and Ady Barkan (1983-2023). This is unfortunate as these two individuals have directly impacted the well-being of millions of people across the United States and inspired others to do similar work. Both can also serve as role models to those of us who want to advocate to improve the health and well-being of our fellow humans.
Judy is known as the Mother of the disability rights movement. She had polio as a young child which left her needing a wheelchair for mobility. She also had two tough Jewish immigrant parents who weren’t afraid to fight for her rights and instill a drive for justice in her. I first learned of the work of Judy Heumann through the incredible documentary Crip Camp. This documentary starts in 1971 at a summer camp in upstate New York for children with disabilities and highlights the impact that the people at this camp, and the dignity and comradery this camp provided, had on the disability rights movement. Judy featured prominently in this movie, particularly as the focus shifted from the camp to the hard work that followed pushing through the Americans with Disabilities Act (ADA).
I learned more about Judy through her incredible autobiography Being Heumann (also available in a version for children Rolling Warrior), starting with an appreciation of just how many barriers people with disability faced before the ADA, how common assumptions and stereotypes about people with disabilities create their own barriers, and how far we still have to go. It is telling and unfortunate that the disability rights movement has not received the same attention as other civil rights movements, particularly as disabilities affect approximately 25% of the population, and we are all vulnerable to acquiring a disability (e.g. through stroke, injury, or illness).
Key lessons from Judy’s life and work include:
Fight with Dignity: One of the most powerful aspects of Judy’s work was her unwavering belief in the inherent dignity and humanity of herself and other people with disability. From an interview: “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 is not a tragedy to me that I’m living in a wheelchair.”
Don’t Take “no” for an Answer: From going to a “normal” school to applying for a job in New York City as a teacher to getting the US government to pass the ADA, Judy has been told “no” by many people in positions of power. Rather than accept “no”, Judy would respond by challenging the systems that supported an unacceptable status quo.
Build Alliances: System change is not easy. Judy realized early in her activism career that many people working together in a coordinated way creates power and that competition among activists dilutes power and wastes resources.
Don’t Make Assumptions: You never know who your allies might be, particularly when it comes to issues like healthcare and disability that affect everyone. One of the surprises for me in Judy’s story was that the Carter administration blocked the passage of the ADA and the Reagan administration (thanks to the vision of Justin Dart, the Father of the ADA and a Reagan appointee) enacted it.
Ady was a lawyer and social activist listed in 2020 as one of Time Magazine's 100 most influential people in the world. Before developing amyotrophic lateral sclerosis (ALS) in 2016, he led two successful national projects through the Center for Popular Democracy, namely the Local Progress campaign which created a national network of over 700 progressive local officials dedicated to shared prosperity and equal justice, and the Fed Up campaign which successfully advocated for the Federal Reserve to not raise interest rates in 2014 and to prioritize minimizing unemployment. Following his diagnosis, he turned his attention to healthcare and started the Be a Hero campaign to fight for maintaining and expanding healthcare coverage for all Americans. This later work is movingly captured in the documentary Not Going Quietly and his book Eyes to the Wind: A Memoir of Love and Death, Hope and Resistance.
Key lessons from Ady’s life and work include:
Make it Personal: There are two sides to this phrase in Ady’s work. The first is to magnify how policy decisions affect individual people by making the stories and realities of these individuals as visible as possible to the people with the power to change policy. In Not Going Quietly this included having people with chronic and life-threatening illnesses go to lawmaker’s offices and talk about what healthcare coverage means for their very survival. The second is to magnify the personal responsibility of policy-makers to do the right thing and to hold them accountable for the decisions they make. Regarding healthcare policy, Ady didn’t remind lawmakers they had the power to be heroes, even if it meant voting differently than others in their political party.
Learn How to Fight for Your Rights: One of the most important lessons for me in Ady’s work is that idealism is unlikely to succeed without the right skills, tactics, and strategy. One of the most impactful scenes in Not Going Quietly for me was seeing the training his group did before confronting lawmakers, including practicing their responses to various forms of rejection and question dodging.
Seize the Moment: In an amazing example of chance favoring the prepared mind, Ady recognized Arizona senator Jeff Flake on an airplane and seized the moment to create a viral video asking him to be an American Hero and stand up for healthcare. Ady’s own reflections on this moment emphasized the importance of always being prepared to further your cause.
Dream Big and Fight Hard: Ady’s synopsis of the most important message of his book, “Dream Big and Fight Hard” speaks for itself. May all of us who want to change the world take these words to heart.