They say the eyes are the window to the soul, and for Ady Barkan, it couldn’t be truer. Barkan was diagnosed three years ago with amyotrophic lateral sclerosis, or ALS — a disease that holds the body hostage by gradually paralyzing its muscles until finally ending the life of those in its grip. Already, he cannot speak, walk, or move most of his body, but his eyes are fully functional. The eye muscles are usually the last to go.
“The internet is a blessing for disabled activists,” the 35-year-old lawyer and activist said through his Eye Gaze tablet, which generates a robotic-sounding voice. The tablet uses technology to track his eye movements on a keyboard and spells out the words his eyes select. When asked a question, Barkan can take up to five minutes to respond through the tablet. “I hope to be useful and civically involved the rest of my life like other people do. I may just have to write more rather than traveling and campaigning.”
For Barkan, finding a way to cram a “30-year career into a couple years” is his top priority. From his Westside Santa Barbara home, he stays busy as a Medicare for All advocate, working to convert the U.S. health-care system into a single-payer model. He’s always been a progressive activist since his college days when he initially considered himself to be moderate. Then in law school, he began thinking that moderation in democracy wouldn’t spark the changes he believes are necessary and found himself leaning further left on a wide range of topics. But when he received the ALS diagnosis at 32, his advocacy became focused on America’s health-care system, and he decided Medicare for All was the solution.