You may have missed this story last week. On flight to Phoenix, man with ALS pleads with Sen. Jeff Flake to vote no on tax bill:
A 33-year-old father battling ALS, also known as Lou Gehrig’s disease, was flying home last week after traveling to Washington, D.C., to protest the tax bill when he came face-to-face with one of the lawmakers he most hoped to influence.
Ady Barkan and others had spent a week trying to get lawmakers’ attention and giving speeches outside their offices.
So when he heard Arizona Sen. Jeff Flake was on his American Airlines flight to Phoenix, he saw his moment.
“He is the single most important swing vote in this tax bill, and I need to tell him my story to vote against it,” he recalled in an interview with the Arizona Republic on Friday.
‘I wanted him to hear my story’
Barkan said he was a “healthy person” just a year ago. Now he lives with ALS, an incurable disease that destroys nerve cells in the body.
“I walk with a cane. I have trouble breathing, and I can’t pick my baby up,” he said in one of the videos, which were recorded and posted by Liz Jaff, a passenger he met while boarding the plane.
“I wanted him to hear my story and answer some questions and hopefully persuade him to vote against it,” Barkan told The Republic.
Here’s what they talked about:
Barkan started the conversation by telling Flake about his diagnosis and his rising medical costs.
“What should I tell my son, or what would you tell my son if you pass this bill and he cuts funding for disability and I can’t get a ventilator?” he asks.
What about PAYGO cuts?
He then asked about cuts required by PAYGO, a budget acronym for the “pay as you go” rule, which requires spending cuts to offset new spending or revenue losses.
The Republican tax-cut bills, which are expected to add about $1.5 trillion to the national debt over 10 years and do not include corresponding spending cuts, could trigger the rule.
That means the White House Office of Management and Budget would be required to identify about $150 billion in annual spending cuts to bring down revenue losses.
Barkan is worried Medicaid and disability funds could be gutted.
Flake told Barkan that House Speaker Paul Ryan and Senate Majority Leader Mitch McConnell intend to waive paygo for the cuts, but it’s not entirely their call to make.
“I’ve voted in favor of paygo, implementing it,” Flake said. “But it’s waived every time, and that’s part of the problem. We never do the cuts.”
So you are telling Mr. Barkan that you want the PAYGO cuts to Medicare and Medicaid to go into effect then? That’s cold, Dude.
Flake goes on to tell Barkan that tax reforms are needed to help the economy break out of the relatively sluggish 1.8 percent annual growth seen in recent years.
Barkan notes that the government’s own nonpartisan estimates indicate that, even when accounting for the full economic effects of the tax cuts — something known as dynamic scoring — the plans will drain revenue, not add to it.
Flake said the dynamic scoring misses at least some of the growth Republicans expect under the tax cuts.
Flake: “I DO believe in magic!”
Later in their conversation, Flake said the U.S. corporate tax rates leave the nation “out of step around the world on corporate tax rates.”
A Treasury Department report under the Obama administration found that the tax rates businesses actually pay is significantly lower than the 35 percent sticker price and is actually less than many other industrialized nations, including the United Kingdom, Germany and Japan, pay.
‘This is your moment’ on DACA
Barkan praised Flake’s stance on “dreamers” and called on Flake to withhold his vote on the tax bill in order to get a legislative solution to immigration issues.
“This is your moment. You gave this speech. You’re leaving in 12 months. You can force them to get a clean DACA bill by January first,” Barkan said.
Flake said he has talked to Vice President Mike Pence and thinks “we’ll get a solution. I hope it’s before March.”
No, senator, Mr. Barkan means now as part of the spending bill that has been kicked down the road to December 22, or attached to the tax bill. Your leverage is now. If this terrible tax bill and spending bill are passed without a DACA fix, it is never going to happen, and you know it.
‘You can save my life’
Barkan asked Flake to make the most of his moment and vote no on the tax bill.
“You can save my life,” Barkan said. “Please remember this conversation.”
Barkan expects two things will come from this chance encounter.
The first involves those who call Arizona home.
“I hope and expect Arizonans to call, call, call Senator Flake to make their opinions known,” he said. “Call Congress at 202-224-3121 to tell your stories.”
The second involves Flake’s response.
“I expect Flake will listen very carefully to his constituents to do the right thing because it will make his grandchildren and children proud,” he said. “(Flake) could become and American hero, and this is his moment.”
Ady Barkan today follows up with an op-ed in the Washington Post. I don’t like the GOP tax bill, but now my life depends on beating it (excerpt):
I didn’t expect to find myself on a flight last week, face to face with Sen. Jeff Flake, arguing for policies that could save my own life. I didn’t expect to spend an afternoon in a D.C. jail, watching Capitol police handle me with kid gloves because of my new disabilities. I didn’t expect to be a beneficiary of the ideas I’d devoted my life to fighting for. Anybody’s fortunes, it turns out, can reverse in no time. That’s why we need an economic justice, good jobs, and basic fairness for working families. And that’s why the GOP tax plan is a danger for every American, especially, to my surprise, me.
* * *
[J]ust as the Fed Up campaign was taking off, my life changed. In October 2016, I was diagnosed with ALS (also known as Lou Gehrig’s disease), a fast-moving degenerative disease that is paralyzing my whole body. It’s rare, especially for people in their early 30s like me. One day I was enjoying afternoon runs along the Santa Barbara coast. Today, I need a cane to get around the house, can’t cut a piece of meat at the dinner table, and don’t have the arm strength to pick up my 30-pound toddler and put him in my lap.
As the details of the GOP tax bill slowly became public, I realized that my lifelong fight for economic justice wasn’t just ideological. It was now personal. Already, I face agonizing questions like the ones faced by people I’ve spent my career advocating for: In the coming years, unless a miracle strikes, I will need a wheelchair and become dependent on others to keep me clean, fed, and comfortable.
I will also need to decide whether to rely on a ventilator and a feeding tube to keep me alive — for between $150,000 and $330,000 per year. And I won’t be able to work, so we’ll be dependent on the generosity of family and friends, my wife’s salary and Medicare.
The Republican tax bill could cut many people like me off from government services. It automatically triggers $400 billion in cuts to Medicare, and Mick Mulvaney, the head of the White House Office of Management and Budget, will have sole responsibility for deciding what programs to slash. Mulvaney opposes the Medicare disability program. If this tax bill passes, will I be able to get the ventilator I need to stay alive?
These worries brought me to Washington last week to protest the bill. Along with dozens of other disabled people and our allies, I tried to meet with House members to tell our stories and urge them to vote no. But when Rep. Darrel Issa’s staff locked their door to us, I began telling my story in the hallway to anybody who would listen. Capitol police asked me to leave, and when I refused, they arrested me and several others. They treated us well. A few officers gave us a thumbs-up as they were leaving the station. Another officer whispered, “Bless you for doing this,” as he placed cuffs on my compatriot.
On the flight back to California, via Phoenix, I ran into Sen. Jeff Flake, who has earned plaudits for choosing, in his words, “country over party” in a series of disputes with the White House and President Trump’s wing of the party. When he announced his retirement with a rousing speech on the Senate floor recently, he noted that elected officials must turn their principles into action: “What is indispensable is what we do here in defense of those values. A political career does not mean much if we are complicit in undermining these values.”
But, bafflingly, he nevertheless voted for the Senate’s toxic tax bill. I spoke with him on the airplane and Liz Jaff, whom I had met while we were boarding the plane, recorded the encounter. I wanted to explain that the bill does few of the things Flake or other Republicans say it will do: It raises taxes for 22 million American families and, according to all credible estimates, significantly increases the deficit. It will widen inequality and it won’t stimulate much economic growth. And by eliminating the individual health insurance mandate, it will raise premiums and undermine the insurance market for the whole country.
Flake told me that he was extremely unhappy with the irregular order that the Senate has used to draft this bill. If he and his senior colleague John McCain want to rebuild the integrity and legitimacy of the institution they love, they have a chance: They can demand a return to regular order for this bill, and then vote for it next year — after the proper committees have held hearings on all the relevant policies, after experts and ordinary Americans (like those in our Fed Up meetings) testify about the effects, after the Congressional Budget Office has scored it, after Americans get to hear what’s in it and register their opinions. There is no need to rush to passage now. The American government is the shared project of the American people. Its legitimacy comes from its responsiveness to our needs and wants. Experts overwhelmingly say this measure pleases the wealthiest donors, not the average American.
For many people, life is good until unlucky disaster strikes. But disease appears. Houses burn down. Drunk drivers run red lights. That’s why we invest, together, in a safety net to protect us — particularly the most vulnerable among us — from misfortune. I want members of Congress to understand this, so on Wednesday I’ll be back with my wife, my son and hundreds of other Medicare-dependent Arizonans and Mainers to implore Flake, McCain, and Sen. Susan Collins to hear our stories. I know from my experience with Federal Reserve leaders that such dialogue can cut through the vitriol, dishonesty and posturing that infects much of our national politics. This is how democracy works.
Flake listened carefully when I addressed him. If he really heard me, he’ll vote against the bill after it’s reconciled with the House version. My son and I — and millions like us — are counting on it.
Jeff Flake gets undue credit from the media for talking a good game, but he never has had game. He never lives up to the ideals he espouses, just like his seatmate John McCain.
Call your senators today to oppose this terrible GOP tax bill. Neither Flake nor McCain are running for office again, so they should be free to reject GOP orthodoxy on “trickle down” taxes and to do the right thing for the American people, for a change.