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, shaped in rectangles, triangles, and multi-sided oblongs, 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 fierce activist and long-time friend 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 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.
Several months ago I went to Denver to crip poet and activist Laura Hershey’s memorial. In disability community, memorials are such sweet and sorrowful events, times of gathering and hanging out and times of deep missing and mourning. I of course kept expecting/wanting/seeing out of the corner of my eye Laura roll into the room. How very predictable. Here’s what I read at the memorial service:
“Laura, you wrote the following in a poem called ‘Telling':
‘Those with power can afford
to tell their story
Those without power
risk everything to tell their story
will hear your story and decide to fight,
to live and refuse compromise.
Someone else will tell
her own story,
“Laura, I still don’t believe that you’re dead, that you won’t write another poem; take another grand adventure; post another lovely and important essay to your blog; rabble rouse, advocate, and publish that first necessary book of poems; go on loving as a disabled dyke mother poet activist. Laura, I just don’t believe it.
“When the news of your sudden passing came down through the community, I heard a lot of stories about how and when folks first met you, read your work. But me, I don’t know. I try to trace it back, when first you entered my world. Were you there in 1985 when I caught my first glimmer of disability politics in the anthology The Power of Each Breath? Or when I lived with a disabled dyke, sat on the front stoop with her, never even whispering the word disability? Or in 1993 when I wrote my first torrent of disability poems after hearing the gay disabled Jewish poet Kenny Fries read? All I know is somewhere in that decade as I came into my queer crip self, you entered my world, long before we ever met. But I don’t know when. Tracing the years back, I struggle to find that moment. But every time I end with the sense, feeling, truth that, even though you were only months older than me, you came before me, made my life as a white queer crip poet rabble-rouser more possible. Your telling has always cradled, nurtured, fed mine.
“And so I want to send to you, wherever you are now, a fragment of writing queer poet to queer poet. One day as Laura and I and many others were organizing the Queer Disability Conference in 2002 we were emailing back and forth about designing the conference t-shirt. Laura wrote, ‘Let’s use a quote.’ And then wrote, ‘I vote for a quote of Eli’s from ‘Gawking, Gaping, Staring’.’ I wrote back with a resounding, ‘No friggin way. We’re not putting the words of one of the core organizers on the conference t-shirt.’ And we moved on. But now I want to send these words out to you, Laura:
‘I am looking for friends and allies, communities where gawking, gaping, staring finally turns to something else, something true to the bone. Places where strength is softened and tempered, love honed and stretched. Where gender is more than a simple binary. Places where we encourage each other to swish and swagger, limp and roll, and learn the language of pride. Places where our bodies become home.’
‘Laura, thank you.”
I recently was the Grand Marshall at Chicago’s 7th Annual Disability Pride Parade. I was honored to be invited, then uncomfortable by the thought of leading the parade. I’m unsettled by the dynamics that lead communities to pick out one person to honor and celebrate when pride particularly isn’t about individuals or fame or being a celebrity but rather about communal struggle, rebellion, and joy. But I did it and had a plentiful day in community. Here’s some of what I read at the rally:
“Disability Pride calls for celebration, hope, rebellion. We take shame, fear, and isolation, turn them around, and forge wholeness. Pride refuses to let the daily grind of ableism, discrimination, exclusion, violence, and patronizing define who we are. Pride knows our history, joyfully insists upon our present, and stretches into our future. It must not leave anyone behind—not folks in prison, not folks in nursing homes, group homes, their families’ back rooms, not folks in psych facilities, not our elders nor our youth. Pride demands and nurtures open, expansive community. Pride means listening hard and being accountable to each other. It means struggling against racism, sexism, homophobia, transphobia, and classism, just as stubbornly as we fight ableism. Pride isn’t about any single identity or community but rather about all of who we are—disabled people of color, disabled lesbians, gay men, and bisexual people, disabled women, disabled poor and working-class people, disabled immigrants, disabled transgender and transsexual people, psych survivors, people with intellectual disabilities, people with chronic illness, people with nonapparent disabilities. Pride asks uncomfortable questions and demands honest answers. It dances, sings, protests, loves, cries, fights, rolls, limps, laughs, stutters. Pride invites us to make home in our bodies and with each other.
“Pride fuels rebellion. During a time when U.S. troops are waging war in Afghanistan, millions of gallons of oil have been pouring into the Gulf of Mexico, and Arizona’s anti-immigration policies have just become law; strong, vibrant, rebellious communities are more necessary than ever. I hope we, as disabled people, will continue to take to the streets, knowing that war, environmental devastation, corporate greed, and criminalizing people of color have everything to do with disability. We need revolutionary pride, liberatory pride now!”
The photo is of Eli speaks at Disability Pride rally, wearing a black top hat with rhinestones and a rainbow boa.
I and a host of other folks decorated my trike for the parade. Here’s another pic:
The photo is of the back of Eli’s trike, above which is a banner that reads “Lame is sexy.” The trike is decorated with a big orange flower that is a whirlygig and spins in the breeze and a small disco ball hanging over the banner, among other things. Beside the trike stands Riva Lehrer, co-creator of this crip pride mobile, with her hand on her hip looking sexily into the camera. During the parade, a number of folks handed out Emi Koyama’s wonderful “Lame Is Sexy” button.
About three weeks ago I was in San Francisco and read at Modern Times Bookstore. It was the first reading from the new edition of Exile and Pride and turned into a celebration of the 10th anniversary of book, not an official launch party but with that feel. The store was packed, standing-room only, unless of course you were a wheelchair user, in which case you always bring your own chair (those of us who are walkies are at a disadvantage here). I’ve been delighted to have the new edition of Exile in the world but also hyper-aware that it’s a 10-year-old book and in many ways I’ve grown as a writer and an activist since it was first published. But the reading was such a good reminder for me that the book is still so important. Several people came up to me afterwards to excitedly let me know that they had just found the book.
In addition to reading from Exile, I also read several poems from The Marrow’s Telling, including “How to Talk to a New Lover about Cerebral Palsy.” As folks were leaving, I got a big thank you for this poem from a woman who said she had just been having this exact conversation with her new boyfriend who has CP. I can’t think of a better compliment because it means that this poem has been of use in such a practical and possibly profound way.
During Q&A, I was asked two questions that were overwhelming in their bigness and that I am still chewing on, thinking about how I would like to answer them now. The first one was about how to get non-disabled progressive organizations to include disability in their political agendas. I talked about three things: 1) the need to break isolation as disabled people (the material conditions of our lives are often such that many of us aren’t able to spend the time we want in communities of our own choosing, which in turn impacts the access we have to progressive activists to push them about ableism), 2) the need to talk about the ways ableism is twined at a fundamental level with other systems of oppression, and 3) the utter need for the disability rights movement to stop being a single-issue and single-identity driven movement. There are so many more things to add to this list — strategies, ideas, philosophies, tactics.
The second question was about political and social changes regarding social justice and disability that have happened in the last 10 years since Exile was first published. I really fumbled this question. I talked about queer disabled people and disabled people of color, both queer and not, finding each other, making community, and building culture. I wanted to talk about movement building work, but all I could think of were the many barriers and walls that a lot of us have encountered in the last 10 years trying to get disability onto a broader political agenda. I’d be delighted to hear other people’s ideas about what has changed in the last decade.
So here’s another story from the Queer Poetics class at Mills.
Among the poems I read in the class was “East Oakland,” which is essentially a love poem that occurred at Mills my senior year. Part of it reads:
…I want to twirl you
across the room,
my hand light
on the small
of your back, want
our bodies to catch
the rhythm, words
we held hands
who bravely choose partners.
Then tell me: my second year
of college I took a field trip, busload
of white kids and me. We drove down
96th Avenue, right past the house
I grew up in, its square yard. Home
called ghetto for the first time.
…My tremors travel
through the arc of our walk,
hands swing into rhythm,
your palm cool and dry,
subway to 54th Street,
words never ceasing.
They taunted me weirdo, retard,
monkey, hey lezzie. Taunted you—
you don’t say the words. I spread
my body against yours, try
to imagine East Oakland, 1965….
As I read this poem 24 years after H gave me her poem reading in part, “At first/we held hands/like children/who bravely choose partners,” after hearing her story about the field trip (which also happened at Mills), after wanting to dance awkwardly and joyfully, after spreading my body against hers, most of which happened on-campus; body memory came flooding back–where we stood, the light on her face, the smell of eucalyptus, the feel of air on skin, the blue of sky. Several times as I read, I wasn’t sure I’d be able to make it through, the layers of emotion so deep, twined, literally taking of breath. What a reminder of the power, longevity, and absolute realness of embodied memory.
Two weeks ago I was in the Bay Area to see the Sins Invalid show and soak up disability culture and hang out with a variety of friends. Among other happenings, I visited the “Queer Poetics” class at Mills College, which is where I received my BA in Women’s Studies 24 years ago. The students had just finished reading The Marrow’s Telling, and we had rolicking, smart, firey conversation. Themes that emerged were about how a poem is made deeper by multiple readings/meanings and how in the threesome of writer-text-reader, the writer doesn’t hold the trump cards.
It started when I read “And Yet” to the class. Several stanzas read:
North on Baldwin Road, I walk my everyday walk.
Bottom of the hill, a dog barks, boy yells, “Hey mister.
Hey mister. Hey mister.” We’ve traded names a dozen times.
Then “Hey retard. Retard. Retard.”
Schoolyard to street corner: words
slung by the pocketful.
Crip skin marked,
white skin not.
And then towards the end of the poem:
do I tell the best,
Several students read “crip” to mean “Crips and Bloods,” which lead to a branching conversation about multiple meanings, rather than working toward a single “correct” meaning. And someone asked about issues of appropriation, since many of the disabled people using the word crip are white. Are white disabled people misusing or stealing the word from a particular African American context? I left campus that night high on ideas, connections, what it means to listen to readers listening and using my work.
Out of this mix, I wrote the following post to the Queer Poetics class blog:
Notes on the word crip
I left the Queer Poetics class and Mills full of the poetry and politics of crip etymologies, appropriation, and simultaneity. I asked Rebekah [the teacher] if I could write a blog post to both thank all of you for our plentiful conversation and extend it.
I know where crip comes from in disability communities—the long histories of folks who have had cripple used against us. We have taken the word into our own mouths, rolled it around, shortened it, spoken it with fondness, humor, irony, recognition. And yet I can’t remember the first moment I heard the shortened, reclaimed version (nor, for that matter, the longer pain-infused original), when I adopted it as my own, started calling myself a queer crip. What are the specifics to this history and etymology? Who said it first in which spaces; how did it catch on; when was it first written down as a way of inscribing pride and resistance; how did it come to be passed from person to person over the years so that now I find myself thinking, “But didn’t crip just arise organically from disability communities, movements, cultures?” These are the questions to map out personal and communal etymologies that have very little to do with the Oxford English Dictionary, often thought of as the final authority on the history and etymology of English words.
At the same time I know close to nothing about the etymologies of Crips in gang culture and African American communities of Los Angeles. And so I went to Google, which of course can be the beginning of inquiry but rarely the end. I read several historical accounts of the founding and early years of the club, the organization, the social and activist network that became the Crips. There is a good handful of stories about where the name comes from. One story tells that it’s an acronym for “Continuous Revolution in Progress.” Another that it comes from an associative trail of names rich enough for a poem of its own—the Baby Avenues morphing to the Crib Avenues morphing to the Crips. A third that it comes from an old Asian-American woman reporting to the police that she had been mugged by young Black men who were carrying walking sticks and whom she called cripples or, in accented English, maybe crips. And there are additional versions beyond these three. Because I read these stories on the Web rather than learning them in community, I have no idea how each of them may be embedded (or not) in communal and personal etymologies rooted in specific neighborhoods, historical moments, and experiences of racist violence.
But what is clear to me is that both uses of the word crip have long community histories of their own. Neither have been appropriated, borrowed, stolen, misused. Disabled people, particularly white disabled people, who call ourselves crips aren’t twisting an African American history for our gain or pleasure. Black boys and men inside the Crips aren’t referencing a word loaded with ableism. The two uses, histories, and etymologies aren’t akin to white people wearing our hair in dreadlocks; trans people claiming their transness as a disability or birth defect in order to explain and create empathy for their embodiment; or non-Native peoples romanticizing, simplifying, practicing, and assuming ownership of Native spiritual traditions. Instead crip and Crips trace simultaneous etymologies.
What do we learn when we lay them side-by-side? What do they share in common, and where do they diverge? Who has bodily, community, political connections to both traces/words? How does gun violence and injury link the two? And finally inside a poem, what do we as readers and/or writers gain or lose by bringing all the histories and etymologies to bear on a single word or by making choices among them?
Thank you for a plentiful conversation that embraced my poems and spun off from them, leaving me with unanswered questions that demand my writerly attention.
My editor just e-mailed me to say that copies of the new 10th anniversary classics edition of Exile & Pride have arrived at South End Press. I find myself excited, surprised, and a bit disbelieving. I mean the book isn’t in my hands yet. But more than that, I so clearly remember coming home 10 years ago to the first box of copies of Exile sitting on my doorstep. How and when did a whole decade pass? How did that book become a “classic”? Wow and whoa!
Here’s an offer and a shameless plug. I still have a dozen copies of the first edition. I’m selling them autographed for $10 each (includes shipping). E-mail me at eli (at) eliclare (dot) com if you’re interested.
I used to be the kind of reader who read one book at a time. I simply wouldn’t pick up another book before I finished the one I was reading. I don’t know when that changed, but it sure has. Here’s the maze of books I’m in the middle of right now.
1) I just finished Suite Francaise by Irene Nemirovsky, a novel about the German occupation of France during World War II. It’s a powerful story, set against Nemirovsky’s bio. A well-known author and Russian Jew living in France, Nemirovsky was mid-way through writing what she was planning as an epic novel when she was deported to Auschwitz. Her young daughters survived the Holocaust and the war and miraculously ended up with their mother’s partly finished manuscript, which 65 years later they published.
2) I’m halfway through Terry Tempest William’s newest book Finding Beauty in a Broken World, which is about learning to make mosaics, studying endangered prairie dogs, and spending time in Rwanda working with Rwandans to create a mosaic memorial for people who died in the 1994 genocide. I’m stalled a bit; the book’s brilliant, but I’m not ready yet to read about the Rwandan horror.
3) And then I’m listening on tape (well, actually on mp3) to Sherman Alexie read his The Absolute True Diary of a Part-Time Indian. It’s such the story of poverty, being Native on the reservation, what it means to leave home, and disability (without ever saying the word disability). A few scenes of bullying with the word retard had me squirming with a sense of recognition. So that’s what I’m reading for leisure.
For work I’m in the midst of three books:
4) As research for an essay I’m writing about living in Vermont, I’m reading The Voice of the Dawn: An Autohistory of the Abenaki Nation, learning the details of land theivery, smallpox, and genocide on the piece of earth that white people call Vermont and Abenakis call Wobanakik.
5) In prep for the mini-course on freak show history that I’m teaching at Oberlin in March, I’m reading Sideshow U.S.A. and thinking right now about Batwa man Ota Benga displayed at the Bronx Zoo in 1906 and Yahi man Ishi displayed at the UC Berkeley Museum of Anthropology from 1911 to 1915.
6) And finally I’m reading Lennard Davis on the history of the concept of normal and Chris Bell on white disability studies, both in The Disability Studies Reader.
It feels like a maze of books, rather than a simple stack, because of the connections and shared themes among them, despite their apparent differences. Clearly genocide tracks through most of them, including a connection between the rise of the concept of normal and eugenicists of the late 1800s. Another connective thread is histories of imperialism. I so clearly can visualize the web, the legacy: Ota Benga living in a zoo, Ishi living in a museum, Abenaki people going further underground to escape eugenicists in the 1930s, Nemirovsky dying in Auschwitz, Rwandans dealing with the aftermath of genocide, a Spokane Indian teenager struggling to leave the Res due to poverty and violence. This web is about interlocking histories, none of which are entirely in the past. Throw in the ways “normal” has been used to bolster and justify so much–from gawking at the freak show, zoo, and museum to imperialist invasion–and the ways abuse, neglect, and disregard of the natural world mirror the same in the human world (as if I could separate the two worlds), and I find myself in a dense maze of reading right now.
One of the major joys of winter for me is snowshoeing. There’s a pasture near my house that I often tromp in, meandering along fresh deer tracks down to a grove of white pines and cedars. Sometimes I lay beneath the pines and listen to the wind in the muffled quiet of fresh snow, watch as it knocks snow off the high branches, white billows cascading to the ground. Other times I’ll tramp a path into the frozen marsh, dead reeds and cattails rustling above my head. Of course, I adore all the natural world stuff, but I also adore how steady I feel on snowshoes. It’s not that I pine for better balance in my day-to-day life as a disabled walkie, but the contrast between my balance with and without snowshoes is quite noticeable. In the years when I lived in places where winter meant rain, not snow, I would never have imagined snowshoes to be adaptive devices. They always looked so clumsy, those oversized frames to strap onto hiking boots. But now I love the places I can go on my snowshoes.
Friday after my last class of the semester, I went to the library on-campus to check out a couple of disability studies books to read over the next couple of slow weeks. After finding the books I was looking for, I started to browse the other disability studies books on the shelf. One of the books that caught my attention was called Unruly Bodies: Life Writing by Women with Disabilities. My first thought was “Oh, I wonder who’s included here.” I turned the book over to read the back cover, only to find much to my surprise that I was one of the writers being written about. Kind of flattering but also kind of weird at the same time. So of course I had to check the book out and read the chapter to satisfy my curiosity.
It’s funny reading academic writing about my writing. Because I’m not really an academic, the language of post-modernism and post-structuralism isn’t familiar or easy for me, all of which is to say that some of what I read doesn’t make sense to me. And some of it is just different from my intention. Of course there is nothing new or surprising to me that readers’ responses to my work differ from my writerly intentions. I’m bemused by some of the differences. I’m claimed as a self-defined “feminist hick,” and certainly I claim the word feminist and explore the word hick, but I don’t put the two together. But here’s my favorite: “Exile and Pride respells its authors name, presenting her as Eli rather than Elizabeth Clare….” This framing of my name change differs so immensely from the way it actually happened at the time.
In 1998 when I was working with South End Press to finish Exile, I had just started using the name Eli, some folks knew me by my old name and others by my new name and still others were making the slow transition from old to new. It was an awkward, uncomfortable, and exciting time, acknowledging my trans self and bringing that self into the world with a new name. I lived a somewhat double life, juggling two names, two pronouns, two restrooms, and more external perceptions of my gender than I care to count. I struggled long to figure out which name I wanted on the cover of Exile. On one hand, I had been publishing in periodicals under my old name for over a decade, and I was still trying on Eli. On the other hand I adored being called “Eli,” and it had started to truly fit. In the years since the publication of Exile, I’ve been more than grateful that I decided upon my new name for the front cover. And now my new name is no longer new but simply my name.
Telling this story isn’t meant to judge one academics reading of my name change but to remark on the difference between internal experience and external reality.