From Tiny Desk to touring, Gaelynn Lea shares message of "Disability Pride"
The 31st annual Developmental Disabilities Awareness Day Conference was held in downtown Niagara Falls Thursday. Its morning keynote speaker is a woman who, despite her physical condition, became a trained violinist who would go on to win the 2016 NPR Music Tiny Desk competition. She now travels to spread a message that being "disabled" is just another form of diversity for which people should be proud.
Gaelynn Lea steered her motorized wheelchair to the front of the stage inside the Niagara Falls Conference and Event Center and told her story, how she found music and how that helped her find inner freedom.
She was born with a condition known as Osteogenesis Imperfecta, or Brittle Bones Disease. It is, she explained, a spontaneous genetic mutation. She has broken 16 bones in her lifetime, many before her birth which has rendered her unable to walk for her entire life.
She became interested in the violin after attending a concert while in fourth grade. Three years ago, she beat out more than 6,000 other entries in NPR Music's annual contest. That big break gave her a chance to take her music on the road and along with it, an opportunity to spread a message of Disability Pride.
"It's been able to give a platform to the voice of our artists with a disability, in a way that we haven't had a lot of it yet," Lea said. "There are other disabled artists for sure. But to have it on a national scale has allowed me to talk about it in the right context. I don't always talk about it at all my shows, but I think it's allowed a platform for that discussion."
Although different and unable to match some of the physical abilities of full-abled people, Lea does not seek sympathy. She has developed her own way to live within her abilities. A resident of Duluth, Minnesota, Lea and her husband travel across the country as she gives speaking engagements and concerts.
"There's kind of an assumption that being disabled is worse than not being disabled but I'd like to change that narrative," she said. "Disability is diversity. It's just a different way of existing in the world and it's not good or bad, necessarily, except that you can have pride in your identity, the same way any minority can have pride in their background or their heritage."
More than 1,000 guests attended Thursday's conference, which included workshops, presentations, vendors and, or course, Lea's performance.
During her visit to Western New York, Lea and her husband visited People Inc.'s Museum of DisABILITY History. She was moved by the exhibits, which tell the tales of the often cruel and inhumane treatment of patients with disabilities in the nation's history. When asked about progress, Lea replied that the movement has gone a long way in a short amount of time but there's more work to do to erase negative perceptions.
"The next thing we've got to focus on is really hammering the idea that disability rights are human rights," she said. "We really have to let go of the idea that disability being a negative. We've made so much progress but there are still lots of negative messages out there."