RIP Ady Barkan (1983 – 2023)

By Simon, 10 November, 2023
Ady Barkan speaking in Bloomington, Indiana Photo: Simon Higgs

I'm not very good at writing obituaries. It's something my mind has a hard time with. I've met a lot of celebrities over the years, but I want to remember Ohad "Ady" Barkan who recently passed away on November 1st 2023. What you will read below is partly an assembly of other people's words, including Ady's, and partly my own, when I find them.

In 2016, he was diagnosed with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease. By the time we met, in 2018, he was confined to a wheelchair, and losing his ability to speak.

Politico, in 2019, described him as "the most powerful activist in America", and, in 2020, he was included on Time's list of the 100 most influential people in the world.

After his ALS diagnosis, Ady had made a simple decision - to make the time he had left on earth count for something, and that was to fight to create a country where health care is treated as a human right.

You read that right. In 2023, the United States still does not recognize healthcare as a human right. A little backstory - after Franklin Delano Roosevelt (FDR) passed away, Eleanor Roosevelt took FDR's Second Bill of Rights to the United Nations, and the right to healthcare became enshrined in Article 25 of the UN’s Universal Declaration of Human Rights (UDHR). But in the United States today we are still fighting for that right.

Ady first came onto the mainstream press' radar when he confronted Senator Jeff Flake on a plane in 2017, asking him to "be a hero" and vote no on a tax bill that threatened cuts to Medicare, Medicaid, and Social Security. The video went viral.

In the summer of 2018, despite Ady's disability and the alarming speed at which he was becoming paralyzed, Ady took to the road on the "Summer of Heroes" tour to share his story - traveling 22 states in 40 days and confronting over 15 Members of Congress.

In the fight for social justice, change never comes easy. But Ady and the movement he has behind him bring us closer than we have ever been to making health care in America a basic human right. - Elizabeth Warren

Ady had a knack for blending his personal story with calls to action. The number being shared below is the Washington D.C. office of Indiana Senator Mike Braun (R).

Summer of Heroes Tour. Photo: Simon Higgs

He was featured in the documentary Not Going Quietly, which followed Barkan's activism after his diagnosis:

Jimmy Kimmel hosts a Q&A session with Ady Barkan, Bradley Whitford, Mark Duplass, and the filmmakers of Not Going Quietly here:

My interaction with Ady was very brief, but profound. I had set up the sound system for the event he was speaking at, on the steps of Bloomington City Hall in Indiana. I was worried because his voice was already showing signs of deterioration from ALS, and what he was saying was important enough that it needed to be heard. He said to me, right as he was going on, "shove that microphone right in my face". I made sure the microphone was indeed right where it needed to be (as you can see in the top picture), and I goosed the PA a little to make sure that he was heard.

I've been to a number of events where he has inspired thousands of people. He is going to be missed by many, many people.


All photos: Simon Higgs