Trying to preserve healthcare, one place at a time

By BILL CHAISSON
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CLAREMONT — Ady Barkan is in a high-tech wheelchair that supports his head and helps him to sit upright. When he speaks — which he was in Claremont to do on Saturday morning — his words are becoming increasingly difficult to understand, but amazingly they become clearer as he goes on, as he gathers what little steam he has left. Barkan has amyotrophic lateral sclerosis (ALS), better known as Lou Gehrig’s disease, an incurable neurological condition. He was diagnosed two years ago at age 34, shortly after the birth of his son. He became a healthcare activist when he realized that proposed changes to the healthcare system would strip him of coverage.

Barkan and his organization, Be A Hero, are nearing the end of a six-month tour, the purpose of which is to go from town to town and inspire local activists to canvass for the preservation of our healthcare system. The local group that sponsored Saturday’s visit to Claremont is called Rights & Democracy. According to their website, “Our mission is to bring people together to take action to build healthy communities and make the values of our communities guide the policies of our government.”

Beginning around 10:30 a.m., Rights & Democracy activists Katie Talbert of Manchester and John Fenley of Lebanon spoke to a group of about a dozen people on the Broad Street common. The crowd was small, but it included two people who were making videos and state Representative John Cloutier. 

Talbert told her story, which was one of a gradual awakening to the reality of class and race privilege in the U.S. Raised in an upper-middle-class white family, Talbert fell into a “gypsy existence” that led to an unhappy marriage that ended in the early 1990s in the middle of the Clinton welfare reform and at the crest of right-wing public rhetoric that blamed single mothers for the ills of society. As she moved into activism, she recalled becoming increasingly aware that government and elected officials were not paying any attention to people like she had become: poor, disadvantaged, and struggling to raise children on her own. 

Unlike Talbert, who needed healthcare for the normal reasons associated with bringing up children and staying healthy, Fenley’s relationship with healthcare was shaped by a catastrophic injury to the frontal lobe of his brain. Now unable to care for himself, Fenley maintains as much independence as he can. He lives in his own apartment, but is visited regularly by paraprofessionals who help him with tasks — like eating regular meals — that his brain injury prevents him from reliably carrying out.

He is a large man and 6-foot-7-inches tall, so he does not canvass door to door for Rights & Democracy, but he does lobby at the state house. “You have to do more than vote,” he said.

Fenley relies on both Medicare and Medicaid for his healthcare. He said his family could not afford to pay for the surgeries that are and will be required, nor for his ongoing care, but he holds out hope of recovery. “Think of [Medicaid and Medicare] as a handup, not a handout,” he said.

Barkan was introduced by two fellow Be A Hero Fund activists. They had been on the tour for six weeks and had begun in Los Angeles. 

“This is about the importance of telling stories, putting ourselves out there,” Barkan said. “We need to show how human reality is different from public policy.” 

Like Fenley, he stressed the importance of the coverage of long-term care. 

He has needed an increasing amount of care for two years. Although he did not say so, anyone who has seen “Pride of the Yankees” knows that unlike Fenley, he has no hope of getting better.

He urged people to go to the state house and to speak with their representatives. “In these tiny districts,” he said, “every voice matters.”

He predicted that in 2019 there would be a reshaping of the national discourse and that a “left flank” of the Democratic party would be established. 

“Single-payer health insurance will be on the table,” he said, “and a humane immigration policy.” 

He urged people to support left-wing candidates and to abandon “watered down neo-liberalism.”