10/28/26 - October Monthly Q&A, with Gaelynn Lea
Good afternoon!
Welcome back to the Disability Thinking Weekday Monthly Q&A.
I'm so excited to introduce this month's guest – musician, public speaker, and disability advocate Gaelynn Lea. She is also the author of It Wasn't Meant to Be Perfect: A Memoir, Co-Founder of RAMPD.org, a Voting Member of the Recording Academy, and founder of Creative Living Coaching. Many, possibly most of us have heard Gaelynn's music. Now let's get to know her a little better as she answers our slate of five questions:
- How, why, and when did you get involved in disability culture and / or activism?
I was exposed to disability culture really early in life, though no one called it that at the time. There was an integrated theater company in Duluth, Minnesota in the early to late-1990's that cast Deaf, disabled, and nondisabled folks side by side, and every single show had ASL interpretation. Around the age of 5, I performed in one of these productions and did several more plays with them through junior high. I was the youngest actor there, so it was my chance to soak in the creativity and wisdom of disabled elders.
I also participated in a ballet class for disabled kids in Duluth, because a very cool Occupational Therapist found out I wanted to be a dancer when I grew up and pushed our local dance company offer a class for disabled kids! I was incredibly lucky that she advocated for me like that. Sometimes it truly is just one determined person making things happen! Both the integrated plays and the dance classes began around 1990. I had no idea just how rare these experiences were back then.
I got my first taste of disability advocacy in college, when I was a co-leader of the disability advocacy group on campus. At first I was hesitant to join because much of adolescence was spent trying to be a "normal" (albeit extremely nerdy) kid. But one of the ASL interpreters from my early theater days was the faculty advisor, so I couldn't turn her down. As soon as I joined, I fell in love. Our group advocated for and obtained a Deaf Studies minor. We created a petition and held a public forum, and it worked! The minor lasted sixteen years and was much loved by students.
After college I worked at a Center for Independent Living, which is where I first found out about the Medicaid Buy-In program in Minnesota (MA-EPD). This allowed me and my husband to get married without losing Medicaid, (I still lost SSI, unfortunately). I really started learning about the Americans with Disabilities Act and also just getting a wider perspective on and appreciation for disability at this job. I was on our town's Council for Disabilities during this time, too.
I did my first public speaking gig about disability awareness in 2014. I'd had an extremely unfortunate encounter with a case worker, (she was very dehumanizing), and so a friend suggested I sign up to give a talk at our local Health and Human Services Conference to help educate other case workers. I put together a comprehensive talk about everything I wished case workers understood about disability. I was floored by how many people came up to me after and said they'd learned so much. I mean, these were people who worked with disabled folks every day! I realized at that moment that the world had a lot to learn about disability, and it felt important to keep sharing my perspective.
I started learning the violin at age ten thanks to an amazing music teacher who helped adapt my playing style to fit my body. But I never really connected music and my disability in my mind until I started touring. In 2016, I hit the road after winning NPR Music's Tiny Desk Contest, and it was then I started realizing just how systemic accessibility issues are in the music industry. So many venues weren't accessible and even though I loved playing shows, it was an access nightmare behind the scenes. I got comfortable advocating for myself and disabled audience members while planning my concerts, out of sheer necessity. What motivates me to fight for access now is wanting things to get better for the next generation - these kids deserve better!
Co-founding and launching RAMPD.org with Lachi back in 2021 was huge for me because suddenly I was part of a network of disabled artists and I felt much less alone in my creative field. We have a long ways to go still in terms of access in the arts, but I have met so many amazing disabled musicians since I started touring who demonstrate that progress is indeed happening.
Most recently, all these parts came together in a beautiful way in a play I co-wrote with disabled storyteller Kevin Kling, called "Invisible Fences." The show is a whimsical, musical fable about two disabled friends. We wrote access into the production: the narrator was the audio describer, the show had captions built into the set and every performance had ASL interpretation. The play was also about disability, but it was our authentic voices, and it covered the full range of the disability experience. I have never felt quite so in my element creatively and advocacy-wise.
You can actually watch the whole play here: "Invisible Fences" — A New Musical Fable for the Stage.
- Which kind of disability-related problem do you experience most from day to day?
I'd say travel and transportation are the two most obvious and frustrating physical barriers I deal with because of my disability. In your home town, you learn to navigate the places that work for you, but on the road you never know what to expect in each new destination. And don't even get me started on air travel! That's even more intense, which is why I prefer to drive whenever possible. I'm lucky my husband travels with me, but inconsistent access still adds a lot of stress on top of a regular music career.
In addition to my physical disability, I also navigate anxiety, ADHD and PTSD. In the midst of a busy career, acknowledging my own, inner needs has been a challenge for me. I think part of this comes from the insidious (ableist) "supercrip" mentality - I grew up believing that I had to work extra hard to prove that am just as valuable as everyone else. This means I often become overwhelmed because I don't give myself enough space to rest, (or I mismanage my time - thanks, ADHD). So I'm trying to allow myself to honor my boundaries and to get okay with saying no.
- How has your thinking about disability changed over the years?
I think I never got how COOL and FUN and CREATIVE so many disabled people are until I got exposed to disability through the lenses of advocacy and the arts as an adult. Growing up I always thought of disability as something to be accepted or navigated, but I didn't see it as something to be celebrated. But that's how I feel now. We are here and we are changing our own corners of the world, and we should celebrate that! I think Wheelchair Sports Camp's recent lyric really hits home for me: "The fact that we exist is testament to who we is" - we are BADASSES who have fought hard to survive and thrive, which deserves respect.
- What do you think is the most urgent issue for disabled people right now?
I would say restoring Medicaid funding and stopping the roll-back of disability rights legislation like section 504, the ADA, and the Olmstead ruling are the most urgent issues. We must not lose gains that disability activists started in the 1970's, or millions of disabled people will see their opportunities shrink, and many others will die from lack of care. Medicaid cuts are already impacting some disabled people, and we can't let it continue. Reaffirming our Civil Rights will require direct action from our community and allies, like "sleepovers in the Senator's offices" (as Kalyn from Wheelchair Sports Camp calls sit-ins), and other forms of political advocacy and awareness building.
Obviously I love, support and want to see more disability culture in the media (I'm SO excited to see "Being Heumann" - I think it could be a watershed cultural moment). However, sometimes I do worry that social media's echo chamber effect could be giving us disabled advocates and artists a false sense of security. My feed is totally filled with badass disabled artists and activists, so online I feel like we're taking over the internet. However I recently asked a nondisabled friend how often she sees disability on her instagram feed, and she said almost never.
Collectively we need to use all forms of activism for making chage right now. We need to reach hearts and minds through culture, and we have to bang on the doors and refuse to leave the halls of government until disabled people's Civil Rights and healthcare are secured. None of us can do this work alone - we need to support each other both online and behind the scenes.
It's frustrating but true that, because so many of us rely on government programs like Medicaid to thrive, as a population we're still in a precarious position in terms of policy. It's not just acceptance that will change our lots - it must be coupled with funding for healthcare, resources and accessible infrastructure.
So even though disabled people are gaining ground culturally, this doesn't mean that the designers of the MAGA movement wouldn't try to lock us all up in a heartbeat if it meant "saving money on Medicaid" (or, more accurately, getting their investor friends government contracts to run "institutions" that house disabled folks). While maybe some of us disabled cultural icons and artists (and those with supportive families) would find ways to stay in the community, there are still so many people on the margins that will absolutely be institutionalized and die if we don't vote the Republicans out of office. This Administration clearly devalues certain human lives, and has decided that locking people away is a viable path to profit. Just look at what's happening across the country with the immigrant detention centers and the criminalization of homelessness! Companies like Vanguard are investing in these places. It's wrong, gross and inhumane, and we can start fixing it by voting on November 3rd!
I also think it's pretty urgent to start adding Disability History to K-12 curriculum in schools, because it's really hard to protect a Civil Rights movement from erosion if no one knows that it exists!
- What do you think is the most promising opportunity for disabled people in the near future?
I think the most promising opportunity for disabled people is the fact that we can be more connected to each other now than at any other point in history. I mean this through the internet, of course, but also in-person, as we have made so much progress over the past 50 years in terms of inclusion and accessibility. And when disabled folks join together, amazing things happen.
One of my dreams for our collective future is the creation of authentic, disability-led creative communities that are built with us in mind. When you build community this way, it actually becomes a more welcoming space for everyone. When we are allowed to fully inhabit our lives and when we can let go of the fear of not being enough, we give others the permission to do the same. I'd love to see these communities welcome in others, such as the aging population and other marginalized groups.
I want to create spaces where everyone is treated with dignity and respect, even when we disagree with each other. Personally, I don't believe anyone deserves cruelty, not even our enemies. Consequences and boundaries can be firm while still respecting our shared humanity. Love, even and especially when it's hard, is the only path I can see leading us closer to a more caring world.
I hope you all enjoy and think about Gaelynn's story as much as I have. I added in a few more links to some of the people and groups she mentions. And here are three more places to learn about Gaelynn Lea, her writing, and her performances:
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