BW's Treefort 2019 Playlist: Gaelynn Lea Talks Disability and the Arts at Storyfort 

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Harrison Berry

Any music festival would be proud to put Gaelynn Lea on its billing: In 2016, she won NPR's second-annual Tiny Desk Concert contest, and since then, she has toured in the U.S. and seven other countries, performing some 425 shows. She played at Treefort on March 22, but Lea had something else to say, so on March 23, she was given the Storyfort stage in The Owyhee to perform a second time, and talk about being a performing artist with a disability.

"Treefort seems like a progressive festival, and it's a good place to talk about disability and the arts," she said.

Lea has a condition called osteogenesis imperfecta—brittle bone disease—and by the time she was born, she had already broken between 40 and 50 bones, and has broken 16 more since then. Many of these breaks were along the bones' growth plates. She said she grew up in a loving household, but when she struck out on her own she discovered she had become invisible.

"You realize not everyone is as cool as your parents, and the world isn't set up for you," she said.

In her early 20s, she suffered respiratory failure, and her first doctor believed that because of her disability, she couldn't be treated and would die. A second opinion from a separate doctor—that Lea be treated with the same medicine as an able-bodied person—saved her life. In another incident, soon after Lea married her husband, a health insurance provider said the only way she would be eligible for an assistance program would be for her to divorce her husband—their combined incomes exceeded an eligibility requirement. It was only after Lea forced the provider to read the fine print that she was given access to the insurance program. For years, she struggled to be gainfully employed, and then to break the $10-per-hour barrier after suffering behind-the-scenes disability discrimination. Don't get her started on how people with disabilities are exiled from conversations about sex and sexuality, either.

"You're essentially completely left out of the dialogue," she said.

Success and the visibility that comes with it have given her a bullhorn to talk about those issues. She now refuses to play venues that aren't accessible to all audiences and performers, and champions political causes related to disability issues.

On stage, Lea cuts a different figure as a performer. From her wheelchair, she holds her violin almost like an upright bass. Instead of playing with the traditional four fingers on the fretboard, she plays with three, and her bow is shorter than the industry standard. She only plays it, she said, "because I had a teacher who was willing to experiment with me."

"It didn't matter how I played, as long as I don't sound like a dying cat," she said.

She doesn't. Her playing is melodic and moving, and she opened a short set with a song about disability awareness, called "I Wait."

"I have pride in having a disability because it gave me a perspective on the world that I wouldn't otherwise have," she said before picking up her violin.
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