Brilliant Imperfection: Grappling with Cure

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.

OVERCOMING DISABILITY

Overcoming bombards disabled people. It’s everywhere. I think of Whoopi Goldberg. In airports and along freeways, I see her plastered on a billboard sponsored by the Foundation for a Better Life (FBL). Head in hands, dreadlocks threaded through fingers, she furrows her forehead in frustration. Or is it bemusement? She casts her eyes up, looking directly at her viewers. The tagline reads, “Overcaem dyslexia,” coyly misspelling overcame. Underneath those two words brimming with stereotypes sits a red box containing the phrase “hard work,” and below that, the command “Pass It On.”

The billboard makes me incredulous. The FBL tries to sell a pair of ideas: that Whoopi Goldberg—famous actor, hilarious comedian, Black woman—overcame learning disability through hard work, which, in turn, is a value we need to pass along. That disabled people can only succeed by overcoming disability is an ableist cliché, but let me turn it inside out. Maybe Goldberg became an actor exactly because of her dyslexia. Maybe she developed her kickass humor as a survival strategy to navigate the world as a Black, poor, disabled girl. Maybe she wouldn’t have made it big without having a learning disability.

To portray dyslexia as a reversal of m and e in the word overcame is dismissive and stereotypical. To pose individual hard work, rather than broad-based disability access, as the key to success for people with dyslexia is absurd and ableist. To pair a Black woman with the value of hard work in a country that both names Black women as welfare queens and has, for centuries, exploited their back-breaking labor as maids and nannies, factory workers and field hands is demeaning and racist. Actually, the billboard enrages me.

***

Overcoming is a peculiar and puzzling concept. It means transcending, disavowing, rising above, conquering. Joy or grief overcomes us. An army overcomes its enemy. Whoopi Goldberg overcomes dyslexia.

I believe in success and failure, resistance and resilience. I’ve felt the weight of ableism, transphobia, and homophobia and witnessed the force of poverty and racism. I know about the refusal to give up and the trap of low expectations. I have a stake in access, interdependence, community, and fierceness mixed with luck and the hardest of work. I understand that survival sometimes depends on staying silent and hidden; other times, on claiming identity and pride. But overcoming mystifies me.

That concept requires dominating, subsuming, defeating something. Pairing disabled people with overcoming imagines disability as that thing. But how could I dominate my shaky hands, defeat my slurring tongue, even if I wanted to? How could Whoopi Goldberg subsume her dyslexia even as words waver and reverse on the page?

***

The chorus of a protest song echoes through my head: “Oh, deep in my heart/I do believe/We shall overcome/someday.” This version of overcoming sung at Black civil rights protests and adopted by activists in a variety of social change movements since the 1960s means something different: collective action, transcending and dismantling white supremacy and poverty, believing in and working toward a future of liberation. But what this song doesn’t mean is equally telling. It doesn’t urge people into a future without, beyond, or in spite of Blackness. Without making an analogy between racism and ableism, the civil rights movement and disability politics, I want to note the striking contrast between “We Shall Overcome” and the FBL’s “Overcaem dyslexia.” The first grapples with systems of oppression; the second, with individualized body-mind conditions.

Sometimes disabled people overcome specific moments of ableism—we exceed low expectations, problem-solve lack of access, avoid nursing homes or long-term psych facilities, narrowly escape police brutality and prison. However, I’m not sure that overcoming disability itself is an actual possibility for most of us. Yet in a world that places extraordinary value in cure, the belief that we can defeat or transcend body-mind conditions through individual hard work is convenient. Overcoming is cure’s backup plan.

PERSONHOOD IS A WEAPON

Some of us are granted personhood as our birthright, but others are required to prove and defend it every day. And when we fail this perverse test, we’re in trouble. Listen. I want us to remember Terri Schiavo. Debates about her raged in the news in 2004 and 2005.

Whatever happens after we die, our body-minds composting back to earth and air, I hope it’s more peaceful than Terri Schiavo’s last few days as she died of dehydration. Everyone — her parents, her husband, her doctors, the media — had an opinion about her and the feeding tube that had just been removed from her stomach.

She was a white woman who collapsed one day, her body-mind changing radically in a matter of minutes as oxygen stopped flowing to her brain and then started again. Some say she lost her ability to communicate, to think, to feel. Or perhaps we lost our capacity to listen. We’ll never know what floated beneath her skin. I want us to mourn for her.

Pundits and reporters, activists and scholars have written about her endlessly. I don’t know why I’m adding to their pile of words, except my memory of her won’t leave me alone.

She was a heterosexual woman whose husband decided she’d rather die than be disabled. Her hands curled, stiffened, joints freezing into contraction. He asserted his patriarchal ownership, refusing to let nurses slide rolled towels into her hands to help loosen her muscles. Nor would he allow them to teach her to swallow again, even though there was every sign that she could. He spent all his court-awarded settlement money on lawyers rather than care, comfort, and assistive technology. What words or fluttering images did she hold in her muscles and bones?

So many people surrounding Terri Schiavo assumed that she knew and felt nothing. Over and over again neurologists, journalists, judges made decisions about her body-mind based on the beliefs that language and self-awareness make us worthy, that death is better than disability, that withdrawing the basic human rights of food and water can be acts of compassion.

I could ponder self-consciousness, spiritual connection, and the divide between human and nonhuman. I could argue with the bioethicists who separate humanness from personhood, declaring pigs and chimpanzees to have more value than infants and significantly disabled people. But really, I’m not interested. I want us to rage for her.

She was a woman living in a hospital bed, referred to as a vegetable more than once. Did she lie in a river of shadow and light, pressure and sound? That too, we will never know. When she died, did we call her name?

Body-minds have value. Certainly I mean our own human selves, but I also mean heron, firefly, weeping willow. I mean dragonfly, birch, barn swallow. I mean goat and bantam rooster, mosquito and wood frog, fox and vulture — the multitude of beings that make home on this planet. I mean all body-minds, regardless of personhood.

She appeared to track the motion of balloons across her hospital room and grinned lopsidedly into the camera. Her life hung between a husband who said one thing and parents who said another, between legal pronouncements and diagnostic judgments. Do we remember her? I don’t mean the editorials, the pro-life versus pro-choice rhetoric, the religious and secular arguments, the political protest and vigil staged outside her hospice, the last-minute drama as Florida’s governor Jeb Bush and the U.S. Congress tried to intervene. I mean: do we remember her?

Too many of us acted as if Terri Schiavo’s body-mind stopped being her own. Depending on who we were and what stake we had in her life or death, we projected our fear, belief, hope, disgust, love, certainty onto her.

I’m trying to say that life and death sometimes hangs on an acknowledgement of personhood. Trying to say that personhood is used all too often as a weapon. Trying to say that while personhood holds tremendous power, its definitions are always arbitrary. Trying to say—I stutter over the gravity of those words.