Writing a Mosaic

For the past 11 years, I’ve been writing about cure. The project became a book called Brilliant Imperfection: Grappling with Cure. I just sent the final manuscript  to the publisher. The book will be out in a year. In celebration, here’s the introduction.

Introduction: Writing a Mosaic

On a meandering walk in Chicago, I come across a mosaic in a working-class neighborhood, spread across the front of a community center. The colors catch me; purple, lavender, yellow, orange dance together. Up close the tiles are smooth, jagged, rounded, reflective, translucent, sparkling in the morning sun, no two pieces the same size and shape.

***

When I set out to write about cure more than a decade ago, I didn’t intend to create a swirling, multi-branched pattern of histories, feelings, and ideas. I planned to craft a half dozen interlocking essays. I imagined a simple, well-laid out collage. But as so often happens with creative projects, I’ve ended up somewhere I never envisioned. I wrote a mosaic.

The fragments and slivers that make up this book came to me in my fury about eugenic practices, the words defect and monkey, the destruction of tallgrass prairie. They took shape as more than one disability activist challenged my fierce anti-cure politics. They emerged as I sifted through my own experiences with the diagnoses of mental retardation, cerebral palsy, schizophrenia, and gender identity disorder.

Everything in this mosaic started as a conversation. I drew upon disability politics, anti-racist activism, queer and transgender movement building, fat liberation work. I pulled environmental justice and reproductive justice into the fray. I used what I know firsthand about ableism and how it interlocks with racism, sexism, homophobia, transphobia, and classism.

I followed the lead of many communities and spiritual traditions that recognize body and mind not as two entities but one, resisting the dualism built into white Western culture. Some use the word bodymind or mindbody; others choose body/mind or body-and-mind. I settled on body-mind in order to recognize both the inextricable relationships between our bodies and our minds and the ways in which the ideology of cure operates as if the two are distinct—the mind superior to the body, the mind defining personhood, the mind separating humans from non-humans.

***

I trail my fingers along the mosaic, feeling bumps and ridges, the tiles’ rough edges, almost sharp. And then I step back to the curb. The individual shapes become less distinct and a woman’s face, a boy in a handstand, feet akimbo, a hand holding a paint brush emerge. They are vibrant, fractured, whole.

***

I started to see the patterns among these seemingly disconnected fragments and slivers as I talked with friends late at night hunkered around kitchen tables, watched the maple trees outside my writing room, season after season, and slept outside, sheltered by white pines.

But cure is slippery. Every place I began turned into a hundred new beginnings. I uncovered cure in obvious places: the Muscular Dystrophy Association’s fundraising appeals, the rhetoric of actor and wheelchair user Christopher Reeve as he lobbied for stem cell research and searched for a way to walk again. But it also kept appearing in less obvious places: ex-gay conversion therapy, weight loss surgery, and skin lightening creams marketed to dark-skinned women of color. I heard its echoes in ads for products claiming to remove women’s facial hair and felt its reverberations in the medical technology some transgender people use to reshape our gendered and sexed body-minds. I saw it embedded in understandings of normal and abnormal, natural and unnatural, in stereotypes about disabled and chronically ill people, in the ways racism casts Black, Indigenous, and other people of color as defective. I slowly realized just how far the ideology of cure reaches.

I couldn’t tell any one story without being interrupted by a half dozen others. I landed inside a knot of contradictions. Cure saves lives; cure manipulates lives; cure prioritizes lives; cure makes profits; cure justifies violence; cure promises resolution to body-mind loss. I grappled through this tangle, picking up the same conundrums and questions repeatedly, turning them over and over, placing them side-by-side, creating patterns and dialogues.

***

I’m drawn back to the mosaic later in the day, the bright yellows now light browns in the afternoon shade. I stand again at the curb, admiring. At this angle, I see spirals and stars, concentric circles of blue, a river of deep red. I could swear they weren’t here this morning.

***

I wrote prose-poems, diatribes, provocations, personal stories. I delved into history. I crafted political analysis. Cure kept shifting. No single genre was able to contain all these fragments. For a long time, I couldn’t envision this book’s fractured wholeness.

And then, brilliant imperfection emerged, swirling between my words. I learned this idea in disability community from my long-time friend and fierce activist Sebastian Margaret. As a way of knowing, understanding, and living with disability and chronic illness, brilliant imperfection is rooted in the nonnegotiable value of body-mind difference. It resists the pressures of normal and abnormal. It defies the easy splitting of natural from unnatural. It has emerged from collective understandings and stubborn survivals. It is expressed in different ways by different communities. Sebastian taught it to me as an uppity, determined pride. Brilliant imperfection winds through this mosaic, a river of deep red.

Inside these shifting yellows, these ridges and bumps, these triangles and multi-sided oblongs, I’m still finding ideas, stories, and feelings that provoke me, surprise me, leave me wanting more.

***

Standing at the curb, I know that the spirals and stars, concentric circles of blue were here all along. They simply appeared because my angle changed.

***

Come sit with me. Let this mosaic that began in conversation spark a hundred new conversations.