Disability is Not a Deficit and Other Truths in an Ableist WorldA Review of Brilliant Imperfection: Grappling with Cure

How do you write a review of a book you’ve been waiting for for 17 years? I savored each page of Brilliant Imperfection: Grappling With Cure, white queer and trans disabled writer Eli Clare’s long-awaited first work since his breakout debut Exile and Pride introduced many to a new kind of radical queer disability politics. (I still have the copy I shoplifted.) In Brilliant Imperfection, Clare picks up where Exile and Pride left off, exploring the difficult concept of ‘cure.’  Clare has written a masterpiece that questions the very definitions of what cure, diagnosis, and what the “body trouble” of sickness and disability mean. As a sick and disabled queer and a survivor who loves disabled genius and has my own complex relationship to diagnosis, cure, and ideas of ‘perfection’ I appreciated it deeply.

Written as a mosaic of many moments in crip time, Brilliant Imperfection argues what many crips have been saying (and what confuses the hell out of many able-bodied people when we say it)—that disability isn’t a deficit, something we should want to get fixed by any means necessary. Clare believes, as I believe, that there are beautiful and important gifts disabled people have because of our disabilities—the “brilliant imperfection” of the titles—and that our lives are as worth living as they are. Disabled people, including Clare, have long argued that we would much rather have the billions of charity dollars raised annually towards cures for different disabilities to be spent on adaptive equipment and personal care attendants and nontoxic products and ASL interpretations—things that can actually increase our disabled and Deaf quality of life now. “At the center of cure lies eradication,” the eradication of disabled and Deaf people, Clare says, a belief that bleeds out into how ableism affects everyone. If we’re better off cured and just like the abled, why fight for disabled folks’ liberation now?

Clare builds from this base in Brilliant Imperfection, diving deeper to look at the nuanced ways disabled folks relate to the supposedly neutral ideas of cure, diagnosis and treatment, examining how ableist colonialism has used cure and diagnosis as a weapon against disabled and temporarily abled people alike, and how many of us have a nuanced and complex relationship to the idea of cure. Rejecting simple answers, Clare says, “Cure rides on the back of normal and natural. Insidious and pervasive, it impacts most of us. In response, we need neither a wholehearted acceptance nor an outright rejection of cure, but rather a broad-based grappling.” Clare writes about disabled friends and comrades who are doing that broad-based, brilliant grappling: friends who fight the military industrial complex’s toxicity which caused their disability, who insistently love their disabled body and reject the environmental movement’s use of them as a poster child whose body is only a casualty; Deaf people’s resistance to and evolving relationship with cochlear implants; and disabled and intersex folks who reject the surgeries and treatments the medical industrial complex insists will ‘fix’ us. These stories are the grassroots stories of disabled and Deaf thinking and organizing that everyone needs to be learning from.

Clare also uses the lens of his own life as a white, disabled, rural, working-class trans survivor of ritual abuse to grapple with it, from his stories (shared by so many disabled people) of total strangers walking up to him to offer prayers, crystals and vitamins to ‘heal’ his disability, to the ways in which diagnosis’s shifting, never ‘objective’ lens could’ve easily diagnosed him as intellectually disabled and not with cerebral palsy, to his experiences with madness as his abuse memories emerge. These stories connect to broader political stories of cures,like the story of Eflornithine, a drug that effectively cured African sleeping sickness but was discontinued by its maker for being unprofitable, then brought back, rebranded and sold in North America when it was discovered to eliminate facial and body hair in women. Clare courageously delves into some hard stories around eugenics, diving deep into the forced sterilization of Carrie Buck and the forced sterilization and infantilization of Ashley “Pillow Angel,” a disabled young woman whose father chose to remove her breast buds and reproductive organs and flood her with estrogen to keep her “forever young.” Questioning and challenging some of the cases ableists use the most to insist that some lives are too ‘stupid’ or low in quality of life to be worthy of autonomous choice, he questions and lays bare the racist and ableist histories that have constructed what many people view as ‘intelligence.’

Finally, Brilliant Imperfection is also an ecological, anti-colonial text. A white survivor raised in rural Oregon on Klamath land with a deep connection to land, animal, and plant communities, Clare introduces the concept of restorations—a process often used by caretakers of land to remediate harm caused by colonial invasion, monocropping and toxic chemical uses—as an alternative to a cure model. In restoration, there is a sense of remediation and healing that does not urge towards an ideal of the ‘untouched,’ ‘natural,’ or ‘perfect.’ What would our lives, movements, and communities look like if we moved towards restoration, not cure?

Brilliant Imperfection is an essential text for anyone grappling with ableism and concepts of perfection’s impacts on their bodymind, communities, and organizing.

Leah Lakshmi Piepzna-Samarasinha is a queer femme sick and disabled Sri Lankan/ Irish/Roma writer, performance artist, educator and hell raiser. The Lambda and Stonewall Award winning author of Dirty River, Bodymap, Love Cake, Consensual Genocide and co-editor of The Revolution Starts At Home, she co-founded and co-directed QTPOC performance collective Mangos With Chili from 2005-2015. A lead artist with disability justice performance troupe Sins Invalid, she is currently finishing her new book of essays, Care Work: Dreaming Disability Justice Culture and book of poetry, Tonguebreakerbrownstargirl.org

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