Ady Barkan, a hero for our timeby digby
Disabled people are being arrested protesting these tax cuts that are obviously designed to reward millionaires and lay the groundwork for destroying the social safety net, also known as the Republican Agenda:
Ady Barkan sat in a wheelchair on Capitol Hill, his words amplified by a human megaphone. His voice weak from the effects of the neurodegenerative disease amyotrophic lateral sclerosis, or ALS, the 34-year-old activist was flanked by fellow organizers protesting the GOP tax bill in the Hart Senate building, who repeated him in unison.
“I have ALS. I am dying,” Barkan said. “But when we come together our voices echo so loud through the halls of Congress, out to the Supreme Court, up Pennsylvania Avenue, all the way to Wall Street.”
A few minutes later, Barkan was arrested by Capitol police for his role in the protest. As he was led away, he walked slowly, leaning on a cane for support. Barkan is no stranger to activism; he’s worked for the progressive group Center for Popular Democracy for five years. But ever since his ALS diagnosis last year, his fight against the GOP tax bill has become deeply personal.
ALS is a terminal neurodegenerative disease that causes a person’s muscles to atrophy. The symptoms vary from person to person; some lose their speech first, while others’ mobility lapses first. ALS patients typically die within three to five years of their diagnosis. Others, including renowned physicist Stephen Hawking, live for decades with the disease.
Barkan was diagnosed with ALS in October 2016, about three months after he noticed his left hand was too weak to shuffle a deck of cards. Before then, he was a healthy young father who went for runs regularly. In the past year, his disease progressed rapidly, limiting his ability to walk or move his arms. He can no longer pick up his son Carl, a toddler with a curly head of hair who recently started to walk and talk.
Eventually, Barkan will need a ventilator to help him breathe and a feeding tube after he’s no longer able to swallow food on his own.
“If I can’t get a ventilator, I won’t live,” he said. “It’s expensive to have a ventilator and have the care you need to accompany it.”
In recent weeks, Barkan has become the face of the protest movement against the GOP tax bill. Unlike the fight over Obamacare repeal, the tax debate has been more challenging for activists to message around. To many people, tax cuts for America’s corporations and wealthy are abstract, even if they are unpopular. Congressional Republicans, desperate for a big legislative “win” this year, are charging ahead. But it’s people like Barkan who are trying to remind lawmakers that the tax bill has real and human consequences — in his case, through potential cuts to Medicare the bill could trigger.
Barkan’s remaining time is limited, and he’s using it to fight.
“Everything is harder,” Barkan said. “Getting in and out of the van where they put you, getting up and down from the chair to walk to fill out my Miranda rights form. Carrying my stuff back to the hotel from the jail. Standing in the cold last night. But those are minor problems at the moment.”
It is an abomination that anyone in this rich country should even have to think about losing health care.They are giving millions away to people who are already rich today, people who have so much money they cannot possibly spend it all.
It breaks my heart that Barkan has been dealt the card he’s been dealt but he is an inspiration.
It’s the Holiday Season and if you feel like putting a little something in the Hullabaloo Christmas stocking this year it would be much appreciated.
Happy Hollandaise everyone!
cheers — digby
