Gaelynn Lea, a musician and advocate born with osteogenesis imperfecta, commonly known as brittle bone disease, is challenging societal perceptions of disability in her newly released memoir, *It Wasn’t Meant to Be Perfect*. Lea, who has had a remarkable career defined by her musical talents, aims to illuminate the value of life regardless of limitations.
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Raised in Duluth, Minnesota, Lea’s life began facing significant obstacles. Even before birth, she endured over 30 fractures due to her condition, which also affected the growth of her limbs and lungs. However, her upbringing was steeped in optimism. Her parents, both aspiring actors who founded a dinner theatre in their hometown, embraced their daughter’s challenges with a ‘can-do’ attitude. “I got really lucky,” Lea states, reflecting on their innate ability to see potential rather than limitations.
From the age of six, Lea began performing on stage and imbibed the family’s enthusiasm for creativity. She mastered the technical aspects of theatre, even taking charge of the light booth while still in her teenage years. Encouragement from her family fostered resilience, enabling her to experience activities that included sledding and even a perilous bicycle ride tied to her brother’s rack. These early experiences shaped her perspective on life, leading her to develop an optimistic worldview despite physical hurdles.
Lea’s passion for music truly ignited during a fourth-grade orchestra performance that introduced her to string instruments. With adaptive assistance from her music teacher, she learned to play the violin upright, resembling a cello. In a pivotal moment demonstrating her commitment to music, she opted against limb-straightening surgery, fearing it might inhibit her finger dexterity. Her determination led her to become involved in Duluth’s local music scene, where she also started teaching fiddle lessons.
Her notable breakthrough occurred in 2016 when she entered NPR’s Tiny Desk Concert contest, encouraged by her students. Winning this competition propelled her career forward, allowing her to tour not just across the United States but also in Europe, alongside her husband, Paul Tressler. Their shared journey blossomed from a connection made during an open-mic night in 2005, culminating in a life filled with music and adventure even amidst the complexities of her condition.
Throughout her musical journey, Lea has opened for renowned acts such as The Decemberists and Wilco, and collaborated with Michael Stipe of R.E.M. In 2022, she composed the score for the Broadway revival of *Macbeth*, showcasing her multifaceted talents. Yet, the realities of performing as a disabled artist unveiled a stark discrepancy in accessibility within many venues. Lea recounted moments where she and her wheelchair were hoisted onto stages devoid of ramps, experiences that were far from empowering.
Amidst the joy of performing, these barriers prompted Lea to reevaluate not only her venues but also the broader attitude towards disability in the arts. To combat the lack of accessibility, she made a pledge to only perform at inclusive spaces and prioritise disabled artists for her opening acts. Furthermore, her current book tour includes a commitment to providing sign-language interpreters at every performance — a move intended to demonstrate advocacy beyond words.
In her memoir, Lea shines a light on the stark difference between how she perceives her life and how society often views those with disabilities. “I see myself as a musician and a writer and a creative person,” she explains, emphasizing that many only see her disability. By sharing her story, she hopes to bridge this divide, encouraging a more nuanced understanding of what it means to live a fulfilled life, irrespective of physical challenges.
Lea’s reflections extend beyond personal narrative; they serve as a poignant reminder of the vibrancy within the community of people with disabilities. She believes that a fulfilling life is attainable regardless of one’s circumstances and that societal perceptions must shift to recognise this truth. Through her music, her advocacy, and now her memoir, Gaelynn Lea aims to propel this dialogue forward, asserting that “being disabled does not preclude you from having a fulfilling life.”