When an orchestra came to play at Gaelynn Lea’s elementary school, she was immediately inspired to learn to play a stringed instrument. Born with Osteogenesis Imperfecta (Brittle Bones Disease) that limits her range of motion, the violinist, singer, and songwriter plays the violin with a technique like that of a cellist. Her original songs and approach to traditional fiddle music are enhanced by her incorporation of live looping and sonic exploration. Lea, who refers to herself as a disabled artist, is also passionate about disability education and awareness-building, and she regularly presents at conferences, universities, music festivals as well as widely-viewed TEDx Talks and in the media. In 2016, Lea won National Public Radio’s Tiny Desk Contest, which introduced her to an ever-broadening audience of fans and admirers, including the person who interviewed her for this blog.

NEA: How did you “find” music—or did music perhaps find you?

GAELYNN LEA: I started learning the violin when I was ten, because an orchestra came to my school and I just loved the way it sounded. I was lucky to have an orchestra teacher that adapted the method of playing the violin with me, and so I've been playing that way ever since. Then I came to Celtic music in college, starting by learning some tunes in an extracurricular group and just playing at jams and open mics. I got into performing backgrounds with violin and vocals with folk groups around the same time, and eventually came to songwriting last. It all kind of built upon itself over time.

NEA: The fact that you had a teacher who said, "Let's work out a way for you to play," is so inspiring to me.

LEA: You know, as remarkable as it is, it shouldn't be. I try to talk to teachers about this whenever I can. I think some people think of music and disability as only music therapy, which is a really misguided way to look at it. Not that [music therapy] isn’t useful, but there are so many other reasons to make music. People should play just because it's fun, and to have the opportunity to learn just because they want to. I’m trying to get away from that idea that only music therapists need to understand the importance of adapting [music-making techniques for disabled musicians]. I think general music teachers should also be equipped to help kids adapt their instruments - that's something that I'd like to see happen, for sure.

NEA: How did you come to use the looping pedal?

LEA: I was introduced to that by a musician who lives in Duluth named Alan Sparhawk, the lead singer of a band called Low. He found me improvising one day at a farmer's market with another musician friend of his, and he said that it would be fun to collaborate sometime. When we did start collaborating he brought over a looping pedal, and said, "I think this would be really cool for your violin to be layered up." When I was first introduced to the looping pedal, he was the one that looped it actually. But then eventually he [said], "Hey, now you should learn to do this for yourself.” So, I did eventually. It took a while to get good at it because learning how to loop is almost like learning another instrument--it's like playing two things at once.

NEA: I've heard you say that a disability contributes to culture, rather than being a barrier to overcome. Can you tell me more about that?

LEA: It comes out of being in a position where you have to be creative and rethink things...you're connected to the world in a different way. Your whole life experience is viewed through the lens of the body that you're living in, right? I have Brittle Bones disease, so the idea of impermanence has been with me for a long time. One day you'll be fine and then you'll just break a bone and all of a sudden, the next six weeks are completely derailed from what you had envisioned for yourself. That idea of impermanence is in a lot of my songs, and I'm sure that it’s, at least partly, because of my disability that it makes it in there.

I would also like people to recognize the universality of disability culture. Because you know, 26 percent of Americans have some kind of disability, so disability is a part of most people’s [own or extended] experience. And if you link it to aging, you capture even more people. The experience of living in a changing body, or a body that doesn't fit what society's standard of normal is, it’s actually a really universal experience. So music written by artists [with disabilities] speaks to something that's just not spoken about otherwise. When you start to put disability culture out in the world, celebrate it, and actually take it seriously, we can start to dismantle stereotypes and also recognize ourselves in the music. I thought it was interesting when I started touring that a lot of people from the LGBTQ community, and some people from different ethnic backgrounds would say, "Well, that song really got to me, it spoke to me."? I think disability culture can also speak to other groups that have been marginalized.

We don't talk about other forms of diversity as something that we’ve got to fix or eradicate. That kind of language isn't accepted for any other minority except, for some reason, we haven't really truly embraced that idea of disability as diversity—yet anyway.

NEA: My understanding is that you've sort of made some rules for yourself about venues where you will and won’t perform, is that right?

LEA: After winning the Tiny Desk Contest I started touring, which is hard for every performer. But then I kept facing these additional barriers. Like a venue wouldn't have a ramp to the stage, or they wouldn't have a ramp at all, or the bathrooms would be woefully inadequate or on the wrong floor. The green room wasn't even on my radar because it was so rare to find a green room that was accessible. So, I was always getting ready [for performances] in a bathroom stall or a closet or whatever. It felt gross, especially to play places where disabled people would have trouble getting in. I did it a few times because that's where my agent booked me, or it was a prestigious venue, or whatever. But if I'm going to be speaking about disability, it's kind of hypocritical to play at places that aren't accessible. Not only that, it seems like nobody's taking this issue seriously. So I started saying, "No, I'm only going to play at places where people with disabilities can get in, and they can use the bathroom, and they can see the stage." Those are the three criteria I have.

If they didn't have a ramp to the stage, but they were accessible otherwise, I would first try to convince them to either build or rent a ramp. But if that wasn't possible and all the other criteria were okay, then I would just play on the floor. But I was not going to let people lift my wheelchair up. Because I can't tell you how many times venue owners said, "Oh, well, we'll just lift your chair up. That's fine, no problem.” And it started to feel degrading and just not safe, and also like they were never going to fix it because they felt like that was a reasonable solution. I don't even have ADA Compliance in the list [of criteria]—a law that is 31 years old—because honestly a lot of places aren't technically ADA compliant, but they are still workable. Someday I’d love to add that to my list of criteria, but the playing field is already so limited, it feels overwhelming to cut out even more venues. But that is the direction I’m heading.

I think if non-disabled artists started demanding the same types of accessibility criteria, then the venues would take this issue more seriously. If they started saying, "Hey, I want an access rider," and, "I'm not playing here because it's not accessible to the audience members with disabilities.” If other people started doing it and it wasn't just two or three disabled artists they have come through to perform now and then, venues would say, "Oh no, I can't get any of the acts I want so I’ve got to do this thing first." If we don't prioritize it, it's not going to happen, you know?

NEA: I'm guessing that you have to approach the venue and say, "Here are my needs," rather than the venue coming to you and asking, “Do you have any special needs that we need to accommodate?”

LEA: Yeah. <Laughter> But it wouldn't be so much more work if it was the norm, the commonplace response of artists. And so, trying to get more non-disabled artists onboard to take it as seriously as I am would be huge. And other disabled artists. You know, there are a lot of people that don't even disclose their disability, because they don't have to, it's not visible. And they're afraid they won't get shows. If like the 25 Top Artists came out and just said, "[Accommodating disabled artists and patrons] is our new normal and we want you to do it, too," I just don't think it would take much more than that. But it just hasn't been said before.

NEA: Were there any disabled people in that first orchestra you heard?

LEA: Nope. <Laughs> I mean, probably somebody may have had a non-apparent disability. I didn’t meet anyone who adapted an instrument for a really long time. Do you know Billy McLaughlin, a guitar player who plays with his guitar in an upright position? He is the first person I met besides myself who modified his playing style due to disability, and I met him in 2005, so that is probably a good ten years after I started playing.

NEA: How important is that representation, and realizing that you don't have to play an instrument the way most people do?

LEA: It's possible without it, but I think it's a much more welcoming world when you feel like you're not the only alien that's doing this new thing. When I saw Wheelchair Sports Camp perform, which is a hip-hop group out of Denver, that made me super happy. I had just started touring and I really felt alone then, because there was just no support and most people don't even know about the barriers that you face. I think it is important for kids to see it and also just for the world to see it, so that other disabled people can be inspired to be artists, but also just so that it can be normalized as just part of our society.

[On a related note,] this year I was contacted by a blind singer named Lachi, who said, "Hey, we're on all these panels together about accessibility all the time, and I am starting a group for disabled music professionals, and I'd like you to help me start it." So, I am the Vice President of RAMPD, Recording Artists and Music Professionals with Disabilities. It’s for people whose music is more than 50 percent of their time or income. There are just so many cool people that I hadn't heard of that I'm meeting through this, so I’m super excited to build a network and hopefully provide support, education, and just a sense of community for people who are disabled performers and other kind of music professionals, [such as music] engineers.

NEA: I’ve heard that you're writing a book, is that right?

LEA: That's been a challenge trying to fit that in, but it is coming. It’s going to be a memoir on kind of a dual track; like every other chapter will be about childhood up to through like college. And then every other chapter will be from winning the Tiny Desk Contest forward, basically up until about the pandemic. But it's going to be fun because we don't talk about a lot of this stuff we just talked about—disability culture and accessibility in the arts and just our experiences on the road with no real support system built in. You know what I mean? So, I'm excited to get that out in the world, too.

Ann Meier Baker was appointed the director of Music & Opera at the National Endowment for the Arts in January 2015. She oversees the NEA’s grantmaking in music and opera, and manages the NEA Jazz Masters Fellowships.