Minnesota folk musician Gaelynn Lea, who was born with osteogenesis imperfecta, or “brittle bone disease,” rolled in her electric wheelchair, cradling her violin, onto the national stage in 2016, when she won NPR Music's Tiny Desk Contest for her song “Someday We’ll Linger in the Sun.” She subsequently composed the score for the 2022 Broadway production of Macbeth, starring Daniel Craig and Ruth Negga.

More than five years ago, while sheltering in place during the pandemic, Lea started writing It Wasn’t Meant to Be Perfect (Algonquin Books, April 14), a memoir about her life as a musician with a disability. It's also a book-length love letter to her parents and her husband, who is both her personal caregiver and tour manager.

Lea talked with PW about her creative process, disability culture, and a multimedia approach to the audiobook version of It Wasn’t Meant to Be Perfect.

You pour some tea about your family, friends, lovers, and others you've met along the way, ranging from well-known musicians to ignorant doctors and government bureaucrats. How did writing about the people who've crossed paths with you impact your relationships with them?

I tried hard to keep it all from my perspective, and to recognize that this wasn't a takedown piece. If it’s a takedown piece of anything, it’s of the music industry, right? Or medical ableism. There are certain things I wanted to shine a light on, but with my personal relationships, I hope that people feel supported; the people that I really am close to have all read it by now and they feel respected. It isn't that I hold anger, but there are things that disabled people have to deal with in all these different areas that we don’t talk about enough. I know for sure that every single story in It Wasn’t Meant to be Perfect is not unique to me. Every single person I know with a disability has been abused by the system—maybe not intentionally, but because there's no awareness or compassion. And I really think the medical industry needs to change—big time.

Is there a story behind the title?

“It wasn’t supposed to be perfect” is a lyric from the song “Perfect,” from Macbeth. There were a few reasons I wanted that to be the title. One was that my disability is osteogenesis imperfecta, which means "not perfect." I thought that would be cool, a nod to the disability. And I think one of the reasons our society has trouble accepting disability is this notion that we all should fit into this box and do everything we can to reach this perfect ideal that is not the right goal for us as people if we want to be happy. You can still have a really cool life and pursue creative dreams from a place that doesn't look perfect.

How and why did you set your personal story in a historical context?

I wanted to make sure there was some disability history in there. The Willowbrook State School and the 504 Sit-in in 1977—it’s important to me that people know what they are. I did my own research, and sent it to five disability scholars to read. The eugenics stuff—that also was fact-checked by people who teach about it. I didn't want people to feel like they’re reading this book for school, but if they got to the end of this memoir and they didn't know about the 504 Sit-in or Willowbrook or about eugenics, I would have felt like I kind of failed. I wanted enough in there so that if anyone felt compelled to learn more, they would know where to start.

What is disability culture?

To me, disability culture is the creative and societal contributions that disabled people make from the specific lens of their disability. That lens is almost always revolving around adaptability and resilience and creativity, because it's kind of by default how we have to make stuff and embrace joy, even in the midst of heartache. It's a very specific lens, I think, that comes out, and it would include all the art forms.

The narrative includes the lyrics to songs you refer to in the text. You recently recorded the audiobook. Are you singing as well as narrating?

There’s going to be music. There’s going to be snippets of me performing between some of the chapters. That was Algonquin’s idea. I'm just so grateful that they thought of it, because if I had read the lyrics out loud, it would have just sounded weird.

This memoir will appeal to wildly different audiences. What’s the big takeaway you want for everybody who reads It Wasn’t Meant to Be Perfect?

The overarching takeaway is twofold. The first is that anyone can have a creative and fulfilling life if they have the right supports. I really believe that disability doesn’t have to be the only defining factor, if your life is meaningful. The other big takeaway, I hope, is kindness. Just the importance of being kind, even when you don't see immediate results. That, to me, is a pretty big guiding principle.