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Born with brittle bone disease and shortened limbs, Gaelynn Lea learned to play the fiddle upright like a cello
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Lea has released several albums, scored a Broadway show and has earned fans like Wilco's Jeff Tweedy and R.E.M.'s Michael Stipe
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Her new memoir It Wasn't Meant to Be Perfect explores her life, music and experiences navigating the world with a disability
One summer day,Gaelynn Leawas between tours and busking beside Lake Superior in her Minnesota hometown of Duluth, when a man stopped to listen. Lea, sitting in her wheelchair holding a fiddle nearly as tall as she is between her bare feet, pulled a short bow across the strings and sang plaintive tunes she'd written.
Between songs, the man came up to her. “I thought he was just enjoying the music,” Lea recalls. Instead he told her he didn't think he'd want to live if he had a disability like hers. “I was like, ‘Whoa, we are not on the same page!' ” says Lea, 42. “I said, ‘I really like my life. I have an awesome life, just so you know.'"
In fact, by that point Lea had already released several albums, toured internationally and won NPR'sTiny Desk Concertcontest. (One of the judges, The Black Keys singerDan Auerbach, said her performance “set about absolutely obliterating your heart.”) “But,” Lea says of the man by the lake, “he couldn't get past my disability.”
In the decade since, Lea has opened for bandsTheDecemberistsandWilco, collaborated withR.E.M.'s Michael Stipeand wrote the score for the 2022 Broadway revival ofMacbeth, starringDaniel Craig.
Now she's writtenIt Wasn't Meant to Be Perfect, a memoir about her life, her music and navigating the world with a disability. “There's a disconnect between how you view yourself and how you get viewed as a disabled person,” she says. “I see myself as a musician and a writer and a creative person. A lot of people are like, 'Oh, she breaks bones.' Or they think, 'She must wish she could walk.' And that's where it stops. That's a really big gap. You just have to keep living your own authentic life and hope they catch up.”
Before she was born, Lea had suffered more than 30 fractures in utero as a result ofosteogenesis imperfecta, a genetic disorder known as brittle bone disease that also affected the development of her limbs and lungs. Despite Lea's health and differences, her parents, aspiring actors who opened a dinner theater in Duluth, saw possibility, not limitations. “I got really lucky,” says Lea of her parents, who were “optimistic problem solvers.”
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By 6, she was already performing onstage and in high school she operated the theater's light booth. In her family, she says, “there was a ‘can do, we'll figure it out' attitude" — even with her siblings, who brought her sledding (“I wasn't pulling myself up the hills, but I was there”) and, on at least one occasion, bike riding. “My brother was really cool about including me and once tied me to his newspaper rack with twine,” she recalls with a laugh. “It was extremely dangerous, but we thought we were being careful.”
In fourth grade she saw an orchestra perform at school and fell in love with the strings. Her music teacher helped her figure out how to play a violin upright, like a cello, using a shorter bow more suitable for her shortened arms. By junior high she was so passionate about music that she decided against limb-straightening surgery for fear of losing function in her fingers: “I didn't want to jeopardize it.”
Lea was teaching fiddle and playing the Duluth music scene when students suggested she enter NPR's contest in 2016. Her career took off after she won, and she toured the U.S. and Europe assisted by her husband, Paul Tressler, 44, a former custodian whom she met in 2005 at an open-mic night (they shared a first kiss on a camping trip with friends).
As thrilling as performing was, Lea quickly realized venues were not made for her — or for anyone else who is disabled.
Frequently she and her wheelchair would need to be lifted onstage because there was no ramp: “Not empowering.” One time she had to prep in a mop closet because the greenroom was up a flight of stairs. “It was hard to come to terms with how inaccessible things were, because I was also having the time of my life,” she says. “It felt like disabled people weren't welcome. I'd think, 'Why am I playing here?' "
Now she plays only accessible spaces and seeks out disabled artists for opening acts. On her book tour, she's committed to including a sign-language interpreter at every show.
Her hope? To “push the conversation forward.” After all, she says, “being disabled does not preclude you from having a fulfilling life.”
Read the original article onPeople
