In October 2016, Ady Barkan — a California-based activist at the Center for Popular Democracy — was diagnosed with ALS, also known as Lou Gehrig’s disease.

Last year, he was going for long jogs along the Santa Barbara coast. Today, he doesn’t have the strength to cut a piece of meat at the dinner table or pick up his 30-pound toddler.

Within a few years, if the disease progresses as expected, he will be fully paralyzed and rely on technology that lets him communicate with eye movements. Between now and then, he’ll need a ventilator to breathe, a food tube, and nursing care. All of that requires the federal government’s disability program.

Despite his impairments — and, in some ways, because of them — Barkan was in the nation’s capital this week to protest against the GOP tax reform bill moving through Congress. While the media has treated the tax plan as if it has already passed, Barkan is part of a grassroots resistance that is refusing to roll over.

Because of the way the bill is written, the administration would get wide latitude to cut federal spending to deal with ensuing deficits. In fact, statutory pay-as-you-go, or PAYGO, rules would require such cuts. Office of Management and Budget chief Mick Mulvaney has made no secret of his antagonism to the government’s disability programs, and he’d be the man in charge of administering these cuts.

Although Barkan was there protesting on behalf of the entire country, the bill would have a potentially lethal impact on himself and his loved ones. “It’s pretty fucking scary to think they’re going to eliminate [disability] or reduce it in order to give Apple another $27 billion,” Barkan told The Intercept in an interview.

Barkan’s previous activism with the Fed Up project has focused on forcing the Federal Reserve to take job creation and wages into account when making monetary policy. In terms of pure effectiveness, it has been one of the most impressive economic campaigns in a generation.

Earlier this week, as part of his protest against the tax bill, he was arrested outside the office of Rep. Darrell Issa, R-Calif., who is the richest member of Congress.

Reggie Rounds, second right, addresses the media as Ady Barkan, a staff attorney with the Center for Popular Democracy, second left, and other protesters stand holding placards with labor market data at the Jackson Hole economic symposium, sponsored by the Kansas City Federal Reserve Bank, at the Jackson Lake Lodge in Moran, Wyoming, U.S., on Thursday, Aug. 21, 2014. Fed Chair Janet Yellen will provide her take on the latest data on labor markets in a keynote speech tomorrow at the annual symposium. Photographer: Bradly Boner/Bloomberg via Getty Images

Ady Barkan, center, and other protesters stand holding placards with labor market data at the Jackson Hole economic symposium, sponsored by the Kansas City Federal Reserve Bank, at the Jackson Lake Lodge in Moran, Wyo., on Aug. 21, 2014.

Photo: Bradly Boner/Bloomberg News/Getty Images

On the way back to California, the flight routed through Phoenix. And on the way to his seat, Barkan came across none other than Sen. Jeff Flake, R-Ariz., was also on the airplane. Barkan stopped by Flake and explained his medical condition and the threat the tax bill potentially poses to people who are dependent on these programs. A member of the flight crew asked Barkan to get to his seat, but Flake agreed to come and discuss the issue with him during the flight.

About an hour later, Flake made good on his promise and came to Barkan’s seat.

Barkan had found that another activist, Liz Jaff, was also boarding his plane. The two struck up a conversation and Jaff was able to record the exchange.

 

Barkan took the opportunity to point out that the tax bill may be used to cut back on Medicare spending due to PAYGO rules. The way this rule works, tax cuts or new mandatory spending must be matched with new tax hikes or cuts in mandatory spending so that the legislation does not increase the projected budget deficit. PAYGO rules are frequently waived, but it is up to the discretion of Congress and the administration. The Congressional Budget Office warns that Medicare could face cuts of up to $25 billion as a result of the tax bill.

“There’s nothing in the bill that cuts anything,” Flake insisted. “But it does — it would likely trigger PAYGO. Now PAYGO has been triggered several times by the deficit or by tax cuts. But it’s never been implemented. Both Mitch McConnell and Paul Ryan have issued statements … saying they’re going to waive PAYGO.”

“But you know … the leadership in Congress is saying one thing and often times doing something else,” Barkan protested. “They said taxes wouldn’t go up for the middle class. Eighty million families will see tax hikes. …. Are you supposed to trust them? Is my wife supposed to trust them that they’re not going to not implement PAYGO when it’s the law of the land?”

“Well, I’ve been around Congress — I voted in favor of PAYGO. Implementing it. But it’s waived every time. That’s part of the problem, we never do do the cuts,” Flake replied.

Flake’s response alludes to the fact that many in Congress openly want to cut Medicare, but they also flinch at the last moment when given the opportunity. Indeed, multiple Republicans in the Senate have told The Intercept they are certain that such cuts will be waived.

Still, cutting Medicare, Medicaid, and Social Security has been on the agenda for House Speaker Paul Ryan for years; he explicitly said he wants to tackle the government’s social insurance programs next year in a recent radio interview. “We’re going to have to get back next year at entitlement reform, which is how you tackle the debt and the deficit,” he said. Simply trusting that these members would vote to waive cuts to Medicare when their agenda for years has been to cut Medicare doesn’t seem like a safe bet to Barkan.

Following their exchange over the tax bill, Barkan also took Flake to task over the Deferred Action for Child Arrivals program, or DACA. The Trump administration essentially gave Congress a six-month deadline for a DACA fix, and Congress has yet to act. Flake is generally an immigration dove and favors a DACA fix but did not demand a vote on the policy in exchange for his vote for the tax bill.

“Freedom Caucus knows how to withold their votes unless they get what they want. He wants the DACA fix, now is his moment,” Barkan told The Intercept.

Top photo: Sen. Jeff Flake, R-Ariz., walks in the basement of the U.S. Capitol between votes Nov. 30, 2017 in Washington.