“I’m never going to overcome my disability because my disability is part of who I am.” Gaelynn Lea was born with osteogenesis imperfecta, a genetic disease that caused her bones to be so brittle that she broke 50 of them while in the womb. Because the doctors were ignorant of her condition, Gaelynn’s bones had healed in all different positions by the time she was born. “An exciting challenge,” as Gaelynn describes her disability.
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Though she originally tried to play the cello, she had to turn her attention to the violin because her arms weren’t long enough to reach the strings. Because of the angle at which Gaelynn’s wrists are bent, her teacher helped her adapt to hold the bow like a bass player. And so her blend of playing a violin like a cello while using her bow like a bass player was born. This unique combination, she says, is what gives the impression that an orchestra is playing, rather than a single violin.
Amidst awards and accolades, Gaelynn refuses to be called an “inspiration.” She says that “That’s coming from a place of pity. People ask, ‘how did I overcome my disability?’ I’m never going to overcome my disability, because my disability is part of who I am.” But Gaelynn is just one of many people with a disability resisting the inspiration paradigm.
In 2014, Stella Young gave a TED talk in which she coined the term “inspiration porn” to describe the way able-bodied people objectify disabled people to benefit themselves. The fact that able-bodied people seem to approach disability with the assumption that their own life is better is the kind of deep-seated prejudice Gaelynn is hoping to address.
The problem with genetic testing and abortion, she says, is that “on some level, you don’t see my life as valuable. There still seems to be, which blows my mind, this goal of ‘someday we’ll have zero disability.’ You can’t eradicate disability and it’s not right to try.”
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