Perhaps then they would understand that they were voting on the question of whether to kill Ady Barkan.

The massive Republican tax bill that sped its way into law these past few weeks has at times seemed like a blur of obscure details ― rates, deductions and exemptions ― decipherable only to accountants and seasoned policy wonks.

But in two face-to-face conversations with key Republican senators, Barkan, a 34-year-old progressive activist diagnosed just over a year ago with ALS, or Lou Gehrig’s disease, managed to boil the technocratic debate down to the straightforward life-and-death questions at its center.

Days after a Dec. 7 airplane conversation about the bill with Sen. Jeff Flake (R-Ariz.) that quickly went viral, Barkan flew back to Washington, D.C., from his home in Santa Barbara, California, to take one last shot at killing the legislation ― this time with the help of his wife, Rachael King, and their 18-month-old son, Carl.

Barkan was once an energetic young dad who took runs on the beach and hiked in the mountains, but ALS, a terminal illness that paralyzes its victims over time, has slowly deprived him of his strength. He can’t pick Carl up, and his movements have become more awkward and constrained, his voice softer and more slurred than it once was. He usually just needs a cane to walk, but on Dec. 13, a day of activism against the Republican tax bill on Capitol Hill, he opted for the extra support of a wheelchair.

Barkan and hundreds of like-minded activists had centered their opposition to the tax bill on the cuts it could generate to essential social programs. They feared the tax bill’s addition of $1.4 trillion to the debt would trigger pay-as-you-go, or “Paygo,” rules ― resulting in across-the-board spending cuts to programs like Medicare that Barkan will depend on as his disease progresses. Specifically, Barkan will need an expensive ventilator and the near-constant help of professional medical staff in the coming years.

While Congress wound up waiving Paygo, critics believe that the budget hole created by the tax cuts will generate enormous pressure to cut Social Security, Medicare and other public benefits. House Speaker Paul Ryan (R-Wis.) has said that slashing these programs is next on his agenda.

And the tax bill’s elimination of the Affordable Care Act’s individual mandate is due to destabilize insurance markets and add 13 million people to the ranks of the uninsured.

Upon his return to Washington, Barkan rolled into the office of Sen. Susan Collins (R-Maine), accompanied by a delegation of the state’s activists, for a meeting they broadcast live on Facebook.

When Collins arrived, Barkan grew solemn. Each member of the group went around the table describing his or her acute health care needs and fears about the changes the massive tax cuts could set in motion.

Collins listened intently. When pressed about Paygo, she repeatedly reassured the activists that she had secured a written promise from Republican leaders in Congress that Paygo rules would be waived.

Barkan and the other activists argued that Republican leaders could break their promise, much as they did the promises to hold the middle class harmless in the tax bill and not add to budget deficits. (Reducing tax deductions, including the state and local tax deduction, in the bill is expected to result in a net tax increase for millions of middle-class households.) “I believe the commitments that I’ve received,” Collins responded when challenged.

That’s where Barkan lost it. Up to that point, he had been speaking in a gentle timbre, but the thought of entrusting his well-being to a pinky promise from Senate Majority Leader Mitch McConnell (R-Ky.) was too much.

“I know,” he said, the strain audible in his voice, “but it’s my life on the line!”

The meeting ended without a resolution. Collins wound up voting “yes.”

It was a defeat, but at least Barkan had made the stakes of her decision plain, both to the senator and to the many Americans following the run-up to the vote. This was a vital sort of activism in every sense of the word. Not for the first time, Barkan had reduced the dispassionate interplay of American politics to its moral essentials.

Link to original article from The Huffington Post