Mourning the Loss of Ady Barkan, Health Care Activist and Co-Founder of Be a Hero
This past week, the world lost one of the nation’s most enduring voices in health care activism, Ady Barkan. Barkan was diagnosed with ALS in 2016 and dedicated the remaining years of his life to advocating for Medicare for all and the vital work of home health care workers – essential to Barkan and his family during the course of his illness.
“Home care is literally keeping me alive. But across the country, almost a million children, adults and seniors with disabilities sit on waiting lists for Medicaid’s home- and community-based care, in danger of being removed from their homes and sent to live in institutions,” he wrote in an opinion essay for The New York Times in 2021.
He spoke often about his role as a husband and father, and how his relationships were supported and strengthened by his home care team. “I get to live each day with dignity and purpose thanks to the team of professional caregivers who assist me 24 hours a day,” he said at the 2022 Reeve Summit, where he opened a profound discussion of the caregiving crisis in America. “The truth is, all of us will need care one day, some sooner than others…You can’t always prepare for the moments that alter the course of your life. Accidents happen and hardships befall us all. When they do, you want the best option for care available. Home care is that option… but this path is out of reach for most.”
The man who Politico called “the most powerful activist in America” was steadfast, even as his condition worsened. “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,” he told The New York Times.
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“We can fund home care and pay our caregivers fair wages for their skilled labor. We can guarantee health care as a human right to all,” he told the Reeve Foundation community. “But it’s going to take a real movement to secure what we need. So, to my disabled friends, comrades, caregiving heroes and loved ones, don’t let up. Join me in sharing your story. Because personal stories have the power to bring light to justice and move people in ways little else can.”