“You can’t eradicate disability,” says Gaelynn Lea, who was born with Osteogenesis Imperfecta, a genetic disorder that makes the body’s bones very brittle.
Lea, who actually had 50 bones break in utero before birth, wants people to know that people with disabilities matters just as much as those without. Despite her challenges in life, including limbs twisted the wrong way due to bone breakage that healed incorrectly, she’s thrived.
In fact, she’s a very talented musician, though she’d rather not be called an “inspiration.” Lea finds that word, when applied to those with disabilities, full of pity — and that’s not what she invites into her life.
She had a dream of playing the cello, despite her small stature and imperfect bone structure. Because the cello was too big, she turned to the violin when a teacher she knew was willing to help her learn. She now plays the violin similar to the way one would play a cello, holding the bow like a bass player, to accommodate for her short arms.
In 2016, Lea won NPR’s Tiny Desk Contest and now travels the country sharing her music and her positive perspective in living life with a disability — and how it doesn’t have to keep you from living your dreams.
She says she will never “overcome” her disability because it’s “part of who I am” but she certainly wants to help change society’s view of people like her.
“I think we have such an ingrained belief that able-bodied living is better than living in a body that was different…most people can’t wrap their minds around it,” said Lea. “The idea of genetic testing and taking babies out pre-term, it’s sort of saying, you obviously don’t on some level think of my life as valuable.”
Lea said she doesn’t understand the mindset of those who want to get rid of disability all together. She says it’s impossible and that she doesn’t “see my disability as a negative part of my life.”
It’s thanks to genetic testing today, though, that more and more women choose abortion when they receive test results of genetic abnormalities in utero. Just watching this video of Lea, it’s heartbreaking to think thousands of people like her aren’t alive today simply because people were scared of what they didn’t know.
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