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I owe a huge debt of gratitude to my twin brother for the person I am today. He is the reason I'm a doctor. He's the "why" behind a lot of my advocacy work. It is hard to fathom my life without him.
He had a tracheostomy from the age of 6 weeks and over a dozen surgeries before the age of 2. My parents were told the best case would be life in an institution
They rejected that idea and instead he became one of the first children in our state with a complex, technology-dependent medical issue to live at home on a medicaid waiver. This set my entire family on a healthcare advocacy journey.
My family is very privileged. My parents were both college graduates. They had jobs and health insurance. Despite this, they found the system virtually impossible to navigate. My brother ran out the "lifetime limit" on his health insurance by the age of 2.
Besides advocating for him, my parents realized those with less privilege had no chance of navigating this system. They started advocating on a bigger scale. Our family testified before Congress on healthcare reform. We were on the news.
My mother changed the focus of her work from geriatrics to disability advocacy. As children we sometimes went with her to talk to state lawmakers. My education in advocacy started here.
Despite frequent hospitalizations, my brother thrived. He was captain of our HS debate team (with scarred-over vocal cords and after years of speech therapy), captain of the Quiz Bowl team, and the manager of the football team. He studied abroad in college.
The passage of the ACA was a game-changer for him because it barred discrimination based on preexisting conditions. Prior to that, his ability to maintain access to the medical supplies and care he needed to live was constantly in
jeopardy.
jeopardy.
He did advocacy work for people with disabilities. He did public health work in Liberia. He taught Sunday school and volunteered for community organizations. He was passionate about social justice on many fronts.
He is the reason I have been in the fight to get universal health care in the US for literally long as I can remember. #Disability Justice isn't an abstract, academic concept for me. So much of who I am is thanks to him. He is why I fight. #MedicareForAll
