Beyond the Chair

Jul 11, 2018

By Michael Zimny

James "JJ" Janis wants people with disabilities to come out into the open and talk about them, but he also wants people to see beyond the mechanized wheelchair that helps him get around. The Chair is Not Me is the title of a book of poems and prose he's just published, which he hopes will spark a dialogue between diversely abled communities. 

"My primary purpose is to foster an understanding between the diverse ability community and those that don't have a disability,” Janis says. “It's getting better but we need to do more work and by we, I'm talking all of us."

Janis was born with cerebral palsy and grew up on the Pine Ridge reservation and in Rapid City. In his poem "My First Taste of Freedom," he recalls that as a child, before he had a wheelchair, he sometimes got around in a little red wagon, "powered by my cousins’ legs."

"We didn't go very fast or far if people didn't eat their morning eggs."   

Disabled people's voices are rare in the media landscape, and consequently some of the issues they face aren't widely discussed. Janis wants to change that with poems like “Unsung Heroes,” dedicated to direct support professionals (DSPs).

DSPs help disabled people, in countless ways, to go about their daily lives — taking them to appointments or visits with family and friends, helping them eat, shower, groom, get dressed. They are indispensable to the people they serve, not only because of the support they provide, but also because of intangibles like relationships and moral support.

"Their influence can ripple throughout our lives," Janis writes.

DSPs are not highly valued by the market. They often receive at-or-near minimum wage pay. Turnover is high. 

This places stress not only on the DSPs, but on the people they serve. "When I have somebody leave after a year, two, three, and even four years, it's like a board pierced my heart," Janis says. "When we lose someone, even if they're just going to a different job, it's like the loss of a family member."

As an advocate, Janis is working to bring more attention to the work DSPs do. As a writer, he's hoping to bring the issues faced by his community into the mainstream. He's not shy about reaching out to high-profile people. He sent a book to George H.W. Bush. "I wrote him a letter thanking him for signing the Americans with Disabilities Act," Janis says, "and told him about how civil his administration was compared to what was going on today."

"When [President Trump] was running, he mocked a news reporter [who] had cerebral palsy, and it was kind of a disgrace. So, I was going to send one to President Trump to let him know that people with diverse abilities can do something, and he shouldn't do that."

The Chair is Not Me — which is illustrated by a group of diversely abled artists — is opening doors. Janis and some of the artists have been invited to present a show at the Dahl Arts Center in Rapid City next summer. 

Michael Zimny is the social media engagement specialist for South Dakota Public Broadcasting in Vermillion. He blogs for SDPB and contributes arts columns to the South Dakota Magazine website.