I used to be a preacher.
And one of the lessons that I would often teach my congregation is that in the Bible, in the days before Jesus’s death, his words had a unique urgency — almost as if he knew that he had to hurry up and say as many things that mattered as humanly possible. Now I’m not comparing my dear friend Ady Barkan to Jesus, but I have long since viewed any words that Barkan is able to utter nowadays as something that we should all stop and pay attention to.
In 2016, Barkan, a beloved 32-year-old organizer with a newborn son, was diagnosed with ALS. And it has been really fucking aggressive ever since. First, it attacked his arms and legs, making it hard for Barkan to get around, but he kept pushing and working and fighting for causes until his arms and legs no longer worked. After he started using a wheelchair, ALS then began to impact his voice, but Barkan never stopped talking, never stopped fighting.
Now it has taken his audible voice altogether. Unable to move his body or speak a word out loud, Barkan, for the time being, uses special software that tracks his eye movements and allows him to communicate to the world through a computer-generated voice. And because he is determined to make the world a better place until his dying breath, today Barkan is doing something truly remarkable.
This week, Barkan made an outrageously difficult trip from California to Washington, D.C., to testify before Congress about the necessity and value of Medicare for All. I was told that this may very well be the last trip he ever makes. It was incredibly difficult and because of the fragile nature of his health, cross-country flights are inadvisable.
I’d like for you to put yourself in Barkan’s shoes for a moment. Imagine you were told that you could make one last flight, one more long trip, before you died. Few among us would have the focus and selflessness to make that last trip a journey to the U.S. Capitol to testify before Congress. I’d like to think I’d have the courage to do what Barkan just did, but I’m thinking that if I had one last flight in my life, I’d take it to the Caribbean somewhere to be dropped off at the beach. But Barkan’s different.
He wants to know that with every breath and every blink of an eye that he has left, that he spent it fighting to make the world a better place for his son — and for all of us, really. So he’s going to be the one and only activist testifying before Congress today offering full-on support for Medicare for All.
And a part of me is embarrassed that the United States, so often hailed by people as the Greatest Nation on Earth, requires a dying man to testify that health care should be universal here. It is universal in nearly every developed nation in the world but this one. While universal health care is framed by conservative Republicans and Democrats as the too expensive socialist pipe dream of crazy liberals, it is literally the standard, the norm everywhere else. Capitalist nations across the world have universal health care systems and people are grateful for them. But the United States, with all of its wealth, refuses to develop one of its own — instead falsely claiming that our system is already the best. It isn’t, neither in costs nor in outcomes.
Every day I am challenged by Ady Barkan to be the best possible version of myself. When my own aches and pains cause me to want to go into a shell, I think of Barkan. When my own insecurities cause me to think that I don’t have the right words to speak or write about the world, I think about Barkan and how he now can hardly do either but continues to fight anyway. The man is my hero, but I know that he doesn’t want us to all sit around and admire his strength in the face of adversity. He is putting his life on the line, making what could be his last trip, because he hopes that we will fight this hard alongside him. It might be for Medicare for All or the environment or voting rights or racial justice, but what I know is this: Ady Barkan is fighting this way, with every ounce of strength he has, so that it will inspire us to continue the fight in his honor after today.
We love you, brother.