Ady Barkan is dying of amyotrophic lateral sclerosis, the progressive neurodegenerative disease known as ALS. The father, former lawyer, and self-made activist is losing control of his motor functions. Most recently, he lost the ability to speak. But he made the trip from Santa Barbara, California, to Washington, D.C., in order to testify tomorrow at a hearing on Medicare for All at the House of Representatives.
Barkan made headlines more than a year ago for confronting then-Sen. Jeff Flake on a plane over the Republican’s support for the GOP tax reform plan. Then Barkan launched a political action committee targeting lawmakers who supported the plan.
Barkan is fighting to pass Medicare for All and will testify using a high-tech device attached to his wheelchair.
Now he’s fighting to pass Medicare for All and will testify in support of the plan on Tuesday to the House Rules Committee. How, though, without the ability to speak, will Barkan advocate for public health insurance for everyone in America?
The answer is a high-tech device attached to Barkan’s wheelchair — along with an organ he still has control over: his eyes. An arm attached to the chair props up a tablet in Barkan’s line of sight, and he uses his eye muscles to move a cursor around to pick and choose words. The device uses a predictive smart technology, similar to what’s used in iPhone messaging, that suggests words and phrases it believes he’s most likely to select. Once Barkan has his sentence — or sentences, depending on how long-winded he’d like to be — lined up, the device plays the words out loud with an automated voice.
“I’m going to lay out three reasons why we need to move to a Medicare for All system,” Ady told The Intercept, when asked what he plans to tell lawmakers on Tuesday. “First, it’ll dramatically enhance the ability of the American people to get the health care we need. Second, it will save us enormous amounts of money, both individually and as a country. And, finally, it will save us the most precious resource we have: our time.”
With a team from his Be a Hero PAC and a caregiver in tow, Barkan went to Capitol Hill on Monday to make sure he’d be able to navigate in his chair and that his automated voice generator could transmit clearly through the microphones. He invited The Intercept to tag along. (Barkan helped raise funds for the Ady Barkan Reporting Fellowship at The Intercept, which was awarded to this reporter.)
Barkan will likely be the first person to ever testify to a House committee using this kind of technology. The response time to questions sometimes lags: It may take him several minutes to respond to questions from lawmakers on Tuesday. He must think up a response, then use his eyes to select the letters and words he wants to say. After the response is crafted, he looks up with his large, greenish-blue eyes to let you know he’s ready. Then the automated voice reads his words over the tablet’s speaker.
.@AdyBarkan is dying of ALS, and he uses a device that recognizes his eye movements in order to communicate. This is how he'll testify tomorrow at the @RulesDemocrats hearing on #MedicareForAll pic.twitter.com/PsxAZPZZ0d— Akela Lacy (@akela_lacy) April 29, 2019
With his speech capabilities restored by technology, Barkan plans to keep jumping into the ongoing debate over the state of health care in the United States. He’s showing up at the hearing in hopes of getting tough questions on Medicare for All, Liz Jaff, president of Be a Hero PAC, told the committee chair Rep. Jim McGovern, D-Mass., and his staff on Monday.
One question Barkan is prepared for is the criticism that wonders how the government will pay for a nationalized health care system. “What we can’t afford is a health care system that continues to put the profits of insurance and pharmaceutical executives ahead of the needs of regular people,” he said. “We pay more than any industrialized nation on earth per person on medical care, but still rank among the bottom in terms of outcomes. That’s wrong. And it’s clearly designed to benefit the wealthy and powerful instead of the rest of us. Medicare for All will save people money, and any tax increase will be far outweighed by exorbitant bills by the for-profit insurance industry.”
“For my family and the scores of millions of families that are suffering under the current system,” he added, “we can’t afford not to enact Medicare for All.”
On Tuesday, Barkan will testify along with Sara Collins of the Commonwealth Fund; Dr. Doris Browne, former president of the National Medical Association; Dean Baker, co-founder of the Center for Economic and Policy Research; and Dr. Farzon Nahvi, an emergency physician and professor. Prior to Barkan’s invitation to testify, Nahvi was the only advocate for Medicare for All slated to appear on the dais. Now the hearing will have one of the movement’s most powerful voices — albeit electronically rendered — speaking up for the national health proposal.
Barkan’s advocacy is, obviously, deeply personal; it’s one of things that makes it so compelling. “Right now, I pay $9,000 per month on top of what my insurance company will cover for the full-time care I need,” he said on Monday. “That’s an enormous burden. And I don’t want anyone to be in this position again. Medicare for All would eliminate this huge financial stress and ensure I’m covered. Crucially, the program will provide for long-term services and support that will allow people like me to stay in our homes and communities with the people we love.”