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Killacky: Evolving Disability Discourse

Vermont has many national treasures living quietly among us, and one of them is Addison County resident Eli Clare. His latest book, Brilliant Imperfection: Grappling with Cure, is revelatory, a clarion call for changing the medicalized disability narrative of defective brokenness. A transgender man living with cerebral palsy, his insights challenge existing notions of what is “normal and natural” as he affirms, “There’s nothing wrong with our disabled body-minds.”

Rather than longing for a cure, Clare embraces his tremoring hands, slurred speech, and stumbling balance. He reminds readers that we “devalue our present-day selves,” by ignoring the “brilliant imperfection of our lives.” Historical research, memoir, and poetry are interwoven throughout, as he debunks the ableist inspiration porn that ennobles and objectifies people with disabilities.

There are many parallels from racial, women’s and LGBT civil rights struggles, and Clare draws from these in adroit critiques of the medical-industrial complex in relation to race, sexuality, gender, and privilege compounded by disability. Environmental polemics and examples from ecosystem restoration further inform his lucid analysis of wholeness.

At two and half years old, Clare was ‘diagnosed’ by a doctor as mentally retarded in 1966. He and his parents visited the Fairview Hospital in Oregon that housed three thousand people, many of whom had been institutionalized their entire lives (and often sterilized from state-sponsored eugenics). Luckily, he was not committed.

Ten years later, his parents were told he had cerebral palsy. A battery of orthopedists, physical therapists, psychologists, audiologists, and speech pathologists then kicked in to make him ‘better.’ As an adult, he was at risk for schizophrenia and suicide because of past trauma from childhood sexual and physical abuse. But his support community helped him cope, rather than medicating with psychotropic drugs.

The author staunchly refuses to be constrained by any diagnostic conditions; instead, he reclaims them as unique assets of his individuation. Other advocates reinforce his celebratory chorus of affirmation.

He also writes cogently about the contradictions with holistic body-mind acceptance and his gender transition. After a lifetime of rejecting medical labels, Clare found himself seeking one, Gender Identity Disorder, to enable his chest reconstruction surgery. This allowed him to be more in alignment with his authentic self.

Questions are posited throughout this elegant treatise reframing disability. Brilliant Imperfection provides empowering answers and guidance - contributing mightily to the evolving discourse on gender, queer, and disability studies.

Update: Phrasing in this post has been updated to reflect NPR editorial policy.

John Killacky is the executive director of Flynn Center for the Performing Arts in Burlington.
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