Be a Hero: In Memory of Ady Barkan (by Elena Hung)
Little Lobbyist Simon Hatcher poses with Ady Barkan in a Capitol Hill meeting room. Simon and Ady are seated in different types of wheelchairs. Ady raises his arm to give Simon a fist bump. Simon’s large, shaggy service dog pokes his nose between the two.
Ady Barkan, health care activist and co-founder of Be A Hero, passed away from complications of ALS on 11/1/23. This tribute is adapted from remarks delivered at CareFest in Los Angeles on 11/2/23.
Like so many who loved him, when I think of Ady, I think of courage.
In my experience, there are two types of courage.
There is the type of courage where we put on our armor and charge into the battlefield, and there is the type of courage where we strip down and bare our vulnerabilities for all to see. I find most people are one or the other. Very few are both.
Ady was both. He was definitely both.
I first met Ady Barkan in the summer of 2017 during the health care repeal fight in Washington, DC. This was shortly after he confronted Senator Flake on an airplane and the video of that conversation went viral.
This was also when my first-ever visit to Capitol Hill with my daughter and friends accidentally resulted in me starting a national non-profit organization advocating for children with complex medical needs and disabilities: Little Lobbyists.
I can’t remember now if Ady reached out to me or if I reached out to Ady first, but we were united in our purpose from the very start. It was the beginning of many conversations, text messages, collaboration, and schemes to ensure health care for all.
We attended countless rallies and press conferences together, sharing our personal stories for why health care is a human right and not a privilege. I often stood next to him at these events, with my amazing daughter at my side.
My daughter, Xiomara, the joy of life, was born with a number of serious medical conditions that affect her airway, lungs, heart, and kidneys. She uses a tracheostomy to breathe, a ventilator for additional respiratory support, a feeding tube for all of her nutrition, and a wheelchair to get around and explore the world around her.
A few years after his diagnosis, Ady would also come to rely on a trach, ventilator, feeding tube, and wheelchair just like Xiomara – all wonderful life-saving supports that allowed them to be able to have meaningful and joyful experiences.
Ady challenged me, and he let me challenge him: on the power of how we use personal storytelling in the name of advocacy. On how we talk about disability in a way that focuses on access and self-determination. On how politics and policy is part of it all.
Elena Hung is at a podium to the right of a large stage, giving her remarks at CareFest. To the left is Jumbotron with a photo of Ady between two other activists at a rally.
Ady and I were both co-chairs of Health Care Voter, a national campaign to hold elected officials accountable for their votes on health care issues. We traveled across the country – physically and virtually – and reminded voters that we have incredible power with our votes in November. In Washington, DC, we also reminded members of Congress that they work for us, that we elect them to represent us, and if they fail to represent us, then we will vote them out of office.
I am and will always be incredibly proud of the work that Ady and I, and both of our organizations, have done together. The work that I treasure the most is what we did to put a face on the importance of home and community-based services.
It was not that long ago that disabled people with complex medical needs – like Ady and Xiomara – were automatically institutionalized.
That was unacceptable to us.
We built on the work of the disability activists who came before us, and we were relentless in the pursuit of the goal that disabled people live at home with loved ones instead of in an institution far, far away.
Ady bravely shared – over and over – how essential his caregivers were to ensure the quality of life he had, and to his ability to live at home with his wife and life partner Rachael and their two beautiful children, Carl and Willow.
Through his storytelling and advocacy, Ady shared the humanity behind his diagnosis, and what is possible when we organize together.
Ady taught us that we can all BE A HERO in the story of how we care for one another.
It is up to us now.
[If you’d like to share a story about how Ady inspired you, visit Be a Hero’s website. You can also donate to GoFundMe to support Ady’s family.]
Elena Hung is the co-founder and executive director of Little Lobbyists.