Santa Barbara activist with ALS speaks at first-ever Medicare-for-All hearing on Capitol Hill

Progressive activist , author, and lawyer Ady Barkan didn’t let ALS stop him from speaking his mind at the first-ever Congressional hearing on Medicare-For-All.

Ady Barkan who was diagnosed with Amyotrophic lateral sclerois several years ago said it was the first time he was giving a speech without his natural voice. Barkan used gaze technology that converted his eye movements into text and then speech.

He told the House Rules Committee, “Over the past 3 years I have seen first hand how the current system creates absrurdy wasteful cost shifting delays, biling disputes, rationing and worry. “

Barken’s wife Rachel King, Ph.D, is a University of California, Santa Barbara, English Professor who took time out from teaching to watch him make history on C-SPAN.

They met at Columbia and have a little boy named Carl who is well-aware that his dad is in a wheelchair.

” To watch Ady giving his testimony was really emotional, it is something he has been working on for a long time. It is hard to see your own personal story being publicized in that way.”

Dr. King said other families are going through similar adversity.

They both believe Medicare-for-All will be a defining issue in the next election.

” I think having this first hearing is a huge step and so many presidential candidates are talking about it. It is such a popular policy when you do the polling, ” said King.

Barken told lawmakers they use a GoFundMe campaign to cover their $9000 monthly home care bills that are not covered by their “relatively good” health insurance.

Without it he would be in a nursing home and missing out on the precious time he has left with his wife and son.

The Yale educated lawyer said, “The fundamental truth is that too many corporations make too much money off our illnesses and they are spending gazillians of dollars lobbying and campaigning and fighting to stop us form building something better.”

After the hearing Barkan texted his wife.

“He said he was tired, but really exhilerated, but just really happy to be there.”

His family looks forward to welcoming him home.

The Ways and Means Committee will take up the issue next, but Barken does not know whether he will be speaking.