This past week, Ady Barkan—a former community organizer with Veatch grantee the Center for Popular Democracy—passed away due to complications from ALS at the age of 39. In 2016, Ady was diagnosed with the illness, a neurodegenerative disorder that eventually left him completely dependent on the aid of home health care. Following his diagnosis, Ady used his extensive organizing background to connect his personal story with the fight for a more inclusive and just health care system in the United States.
“That’s the paradox of my situation,” he told The New York Times in an article from 2019. “As my voice has gotten weaker, more people have heard my message. As I lost the ability to walk, more people have followed in my footsteps.”
Prior to his diagnosis, Ady worked to promote progressive causes like living wage jobs, inclusive and affordable health care, and environmental justice as an organizer with Veatch grantee, Center for Popular Democracy. His training as a community organizer ensured he was ready, following his diagnosis with ALS, to lend his own voice and story to fighting for health care justice. He founded a new organization, Be a Hero, to help further the cause.
Ady became known for his ability to use his powerful story to push for systemic changes in the country’s health care system—and never missed an opportunity to put his organizing skills to work. In 2017, for instance, he confronted Senator Jeff Flake, Republican of Arizona, over his support for a Republican tax bill involving cuts in social services, including health care. “Think about the legacy that you will have for my son and your grandchildren if you take your principles and turn them into votes,” Mr. Barkan said. “You can save my life.”
As the New York Times wrote in an article chronicling his life and work, Ady “remained relentlessly optimistic and energetic even as he become paralyzed from the head down and lost control of his breathing. In 2018, he traveled to 22 states in 40 days. Three years later, he argued in an opinion article in The New York Times that home- and community-based care deserved more federal funding.”
As we celebrate Ady’s incredible life and career, our hearts and condolences go out to Ady’s wife, Rachel, and their two children, Carl and Willow. To learn more about Ady’s activism, read his obituary in the New York Times.