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FORGE Forward Conference keynote speech
crane
pitbull_poet wrote in ftm
Enough people asked me for a copy of my keynote from the FORGE Forward Conference that I'm posting it here.

BODY SHAME, BODY PRIDE: LESSONS FROM THE DISABILITY RIGHTS MOVEMENT by Eli Clare

All my life as a genderqueer crip, I have puzzled my way through bodily difference, struggling with my own shame and love, other people’s pity and hatred. Yesterday I helped facilitate the Disability Gathering here at the conference. We spent the day, disabled people and our allies telling stories, laughing, crying, and sitting quiet. It reminded me of the incredible importance of community, how bodily difference means one thing in isolation and quite another when we come together, finding ourselves reflected in each other’s stories.

My first experience of queerness—of bodily difference—centered, not upon sexuality or gender, but upon disability. Early on I understood that my body was irrevocably different from my neighbors, classmates, playmates, siblings: shaky, off balance, speech hard to understand, a body that moved slow, wrists cocked at odd angles, muscles knotted with tremors. But really, I am telling a kind of lie, a half truth. Irrevocably different would have meant one thing. Bad, wrong, broken, in need of repair meant quite another. I heard these every day as my classmates called retard, monkey, defect, as nearly everyone I met gawked at me, as my parents grew impatient with my clumsiness. Irrevocably different would have been easy compared to this. I stored the taunting, gawking, isolation in my bones; they became the marrow, my first experience of bodily difference.

Because of that, I have always come to community hungry, seeking reflection, wanting dialogue, hoping for a bridge. I know I’m not the only one. Tonight I want to continue my puzzling through bodily difference, spanning the distance between disability politics and trans experience.

Of course I could start with the substantial presence of disabled folks in trans communities, and by disability I mean cognitive, learning, sensory, and psych disability, as well as physical ones. Or start with the truisms about bringing experiences of multiple oppressions and identities to our work. Or start with the overdue need for accessible spaces, the importance of integrating ableism into our understanding of oppression.

But really I want to delve beyond the rhetoric we often don’t pay attention to. Delve into the myriad of lived bodily differences here in this room tonight and think hard about three lessons I’ve learned from the disability rights movement. The first is about naming, the second, about coming out and disclosure, the third, about living in our familiar, ordinary bodies.

First, naming. I often hear trans people—most frequently folks who are using, or want to use, medical technology to reshape their bodies—name their transness a disability, a birth defect. They say, “I should have easy access to good respectful health care, just as other disabled people do. I simply need a cure.” The word defect always takes my breath away; it’s a punch in the stomach. While I want to respect the people who frame their transness this way and acknowledge their truth, the logic of this equation frustrates me. I could only wish disability assured decent health care. Instead disabled people deal with doctors who trivialize and patronize us, who believe some of the worst ableist stereotypes, and sometimes even think we’d be better off dead. But my frustration doesn’t stop there.

The second part of the equation—disability equaling the need for cure—is drenched in some of the very stereotypes that disabled people struggle against every day. It takes for granted that disability is an individual medical problem curable, or at least treatable, by doctors. It runs counter to the work of disability rights activists who frame disability as an issue of social justice, not of medical condition: disability lodged not in paralysis but rather in stairs without an accompanying ramp, not in depression or anxiety but rather in a whole host of stereotypes, not in dyslexia but in teaching methods unwilling to flex. It ignores the reality that many of us aren’t looking for cures but for civil rights.

I’ve been asked more than once whether I ‘d take the hypothetical cure pill. I usually explain that having cerebral palsy is like having blue eyes and red hair. I simply don’t know my body any other way. Thank you very much but no: no to the New Age folks who have offered crystals and vitamins, no to the preachers who have prayed over me, no to the doctors who have suggested an array of drugs and possible surgery, all with uncertain outcomes. It gets complicated because as trans people, many of us actively do seek body change, but in that search to pair disability and cure together as inevitable is to buy into ableism. In short this equation that claims transness as disability is just not connected to what’s real for me and many other disabled people.

And then I get to the word defect. It’s an intense word, loaded in this culture with pity and hatred. It’s a word I’ve heard all my life and has all too often fanned the flames of shame. Let me tell you how it has crept into me, and because I’m a poet, let me do that by breaking out a poem that has nothing and everything to say about transness:

TREMORS

Hands burley and knotted, I tuck them
against my body, let tremors run
from shoulder blade to fingertip. Tension
burns the same track of muscles, pencil slows
across blue-lined paper, words scratch
like sandpiper tracks at low tide.
Kids call cripple. Bank tellers stare silent.
Doctors predict arthritis. Joints crack
in the vise grip: my hands want
to learn to swear. Late at night
as I trace the long curve of your body,
tremors touch skin, reach inside,
and I expect to be taunted, only to have you
rise beneath my hands, ask for more.

When trans people name their transness a birth defect, they are invoking some horrible bodily wrongness, and by appealing to cure, they mean to end that wrongness. A syringe of testosterone or $8,000 worth of chest reconstruction surgery surely goes a long way towards shifting gender dysphoria for those of us on the FTM spectrum. But what leads folks to name their bodies defective—and by implication, pitiable or despicable—in the first place? Some of the answer has to be shame, and medical technology won’t solve all of it.

Don’t get me wrong: I’m not dismissing medical transition as caving into the gender binary or into shame itself. In truth hormones and surgery are powerful tools along the way, as are the choices to live in all kinds of gendered and sexed bodies—the possibilities way too many to name. It’s just that medical technology isn’t the whole answer for any of us.

Rather than resorting to some naïve and stereotyped notion of disability, I want trans communities to grapple with the complex twine of gender dysphoria and body shame. What are the specifics of our shame? How do we move through hatred, disgust, numbness toward comfort and pride, all the while acknowledging body dissonance as a real, sometimes overwhelming, force? How do we teach our hands to swear?

Late at night
as I trace the long curve of your body,
tremors touch skin, reach inside,
and I expect to be taunted, only to have you
rise beneath my hands, ask for more.

Let’s lean towards a place where we can name bodily difference, even through our ambivalence, grief, longing, in ways that don’t fan the flames of shame, a place where none of us expect to be taunted and we know ourselves to be sexy and desirable.

***

That’s naming, and now let me move on to a second lesson I’ve learned from the disability rights movement, a lesson about disclosing and coming out. In trans communities we talk a lot about disclosure, but so often that talk is full of misunderstanding and accusation. Folks who choose to be “stealth” are accused of shame, and folks who choose to be “out” are told they’ll regret it later. In these community controversies, we lose all the nuance—the layers of history, fear, protection, exhaustion, resistance, pride, and pure practicality—that come with being out or not.

Let me tell you about disclosure, crip style. Here’s another poem.

HOW TO TALK TO A NEW LOVER ABOUT CEREBRAL PALSY

Tell her: Complete strangers
have patted my head, kissed
my cheek, called me courageous.

Tell this story more than once, ask
her to hold you, rock you
against her body, breast to back,

her arms curving round, only
you flinch unchosen, right arm trembles.
Don’t use the word spastic.

In Europe after centuries
of death by exposure
and drowning,
they banished us
to the streets.

Let her feel the tension burn down your arms,
tremors jump. Take it slow: when she asks
about the difference between CP and MS,

refrain from handing her an encyclopedia.
If you leave, know that you will ache.
Resist the urge to ignore your body. Tell her:

They taunted me retard, monkey,
defect
. The words sank into my body.
The rocks and fists left bruises.

Gimps and crips, caps
in hand, we still
wander the streets but now
the options abound: telethons,
nursing homes, welfare lines.

Try not to be ashamed as you flinch and tremble
under her warm hands. Think of the stories you haven’t
told yet. Tension locks behind your shoulder blades.

Ask her what she thinks as your hands shake
along her body, sleep curled against her,
and remember to listen: she might surprise you.

I want to nurture the most complex conversation possible about how we disclose our bodies and identities to strangers, friends, co-workers, lovers, tricks, doctors, family. I want to honor all the losses and gains contained in each decision to be out or not. At the same time, I want to challenge the argument I hear sometimes that being trans is simply a private bodily and medical matter, no one's business beyond our closest intimates.

The ability to keep bodily matters private is a privilege that some of us will never have. Just ask a poor person on welfare, a fat person, a visibly disabled person, a pregnant woman. Ask a person of color whose ethnic heritage isn't seemingly apparent. Just ask a seriously ill person, a gender ambiguous person, a non-passing transman or transwoman. All these people experience public scrutiny, in one way or another, of their bodies.

In this culture bodily difference attracts public attention. Privacy is not an option. Certainly as a disabled person, I never get a choice about privacy. Sometimes I can choose how to deal with gawking, how to correct the stereotypes and lies, how to live with my particular bodily history. But I don’t get to choose privacy, much less medical privacy. The first thing people want to know is what’s wrong with me. Sometimes they ask carefully about my disability, other times demand loudly about my defect. But either way they’re asking for a medical diagnosis. And if I choose not to tell, they’ll just pick one for me anyway and in the picking probably make a heap of offensive assumptions. The lack of privacy faced by poor people, fat people, disabled people, people of color, and visibly queer and gender variant people has many consequences connected to a variety of systems of oppression. I'm not saying that bodies should be public, just that many people don't have access to bodily privacy.

And so when I hear the argument that being trans is a private matter, I want to ask: do you know that bodily privacy is a privilege regulated by systems of power and control? And if you have that privilege, how are you using it, even when it’s laced with ambivalence and stress?

In asking these questions, I'm not judging any individual choice about disclosure. In a transphobic world all the available options are fraught. And it goes without saying that non-consensual disclosure is just plain wrong, and in some cases, deadly. But I do want to question the value some trans people place on privacy.

In contrast the disability rights movement values self-determination. Who gets to make which choices about our bodies—where we sleep, what we eat, who we socialize with? A popular disability rights slogan declares, “Nothing about us without us.” For peoples who have long histories of institutionalization in nursing homes, group homes, psych wards, state hospitals, and rehab centers, self-determination is a radical and liberating politics. We get to determine how and when to explain ourselves, bodies not reduced to medical histories but rather belonging fully to us, doctors playing only small, bit roles. By valuing self-determination, we invite many different kinds of bodies to the table. We reach toward liberation rather than privilege.

And now turning back to trans disclosure, I remember what intimate and risky work it is, so full of conflicting urges and emotions—exhaustion, frustration, necessity, fear, desire.

Take it slow: when she asks
about the difference between CP and MS,

refrain from handing her an encyclopedia.
If you leave, know that you will ache.
Resist the urge to ignore your body.

Intimate and risky, and yet what would disclosure look like if trans communities shaped a politics around self-determination, rather than privacy?

***

Naming, disclosure, and now I’ll turn to a third lesson I’ve learned from the disability rights movement, a lesson about living in our familiar, ordinary bodies. I watch marginalized people in a variety of communities yearn towards—or make declarations of—normality. So many FTMs aspire to be normal men, MTFs to be normal women. There are trans folks who don’t want to be queer no-way-no-how, and others who embrace their queerness loudly and with pride. Personally I’d like to grind the idea of normality to dust. I don’t mean that everyone in my worldview ought to be queer; it’s just that the very idea of normal means comparing ourselves to some external, and largely mythical, standard. But being normal or being queer aren’t the only choices.

Let me tell you about my ordinary and familiar body. Here’s another poem.

TO THE CURIOUS PEOPLE WHO ASK, “WHAT DO YOUR TREMORS FEEL LIKE?”

Tell me: have you ever watched
hands play a piano? Fingers
on the keys, ivory to skin, dance
white to black and back again, run
wild and loose, thump and caress
the universe cradled inside
a baby grand, those hands
I lost at birth. Breath squeezed
to empty gasps, I fell into the world,
brain of my fingers half dead.
Explain to me your hands resting
still as water before they dance.
That I cannot imagine.

All too often in trans communities we buy into the wholesale medicalization of our bodies and lose what is simply ordinary and familiar about them. I think of the long-standing argument that trans activists are embroiled in about the DSM and Gender Identity Disorder. Does the diagnosis that trans people use to access medical technology belong in the DSM; is transness a psychiatric disorder; where does it belong if not in the DSM? This conversation has been, and continues to be, long and fraught. The details are important, and I find myself agreeing with parts of both arguments. But in the end, I think we’re asking the wrong questions.

These debates have highlighted the need for a diagnosis for transsexuality, underscored the differences between a psychiatric and a medical framework, articulated the trouble with the word disorder. But still we haven’t questioned the core relationship between trans people and the very idea of diagnosis. Many of us are still invested in the ways we’re medicalized. How often have you heard trans people come out by saying, “I have Gender Identity Disorder,” explain and defend their choices by referencing that diagnosis? We praise our doctors, rail against their quirks, measure our transitions in medical terms. And even trans folks who have no interest in medical transition are assumed to be in relationship to it. How many female-bodied genderqueer people here are sick of the question, “When are you going to start testosterone?”

In counterpoint, the disability rights movement fiercely resists the medicalization of bodies. Certainly disabled people sometimes need medical technology to sustain our very life’s breath, but that doesn’t transform our bodies into mere medical conditions. We have become practiced at defining ourselves from the inside out, stepping away from the shadow called normal, understanding what doctors can offer and what they can’t. If trans people took up this disability rights lesson and defined ourselves on our own terms rather than through the lens of medicine, we’d still care about finding good doctors and getting good medical treatment, but our bodily truths wouldn’t ultimately be medical truths. From this place of power, the question of psychiatric versus medical diagnosis would become less pressing.

At the same time, issues surrounding psychiatric diagnosis can be about life and death for all kinds of folks trapped inside the mental health system. As we talk about the DSM, let’s not forget the gender variant youth who endure psychiatric abuse, the transsexuals who need drug treatment programs but can’t find placements because their transness is seen as psychiatric illness. With a disability politics, we could learn to use diagnosis without being defined by it, all the while resisting the institutions that hold power over us. Simply changing where GID lives without changing our relationship to the idea of diagnosis won’t even go half the distance toward liberation.

Rather than diagnosis, I want us to reach toward our own familiar, ordinary bodies and histories:

Explain to me your hands resting
still as water before they dance.
That I cannot imagine.

I mean for us to embrace our myriad of bodily differences, to understand our lives as ordinary and familiar from the inside, even as we’re treated as curious, exotic, unbelievable, deceptive, threatening from the outside. You only need to look around this room to see, hear, feel this myriad. I mean for us to embrace our bodily differences while never forgetting the ways in which the world privileges some bodies and marginalizes others. Bodily difference as neither good nor bad, but as a simple fact of life: gender wrapping around sexuality hanging onto race compounding class pulling at disability, all of it finally piling into our tender, resilient human bodies where the answers are ultimately not about doctors, even for those of us who transition, but about self love, community, and liberation.

***

In the end I’m reaching toward a disability politics of transness, not one of simple analogy, but one that reaches deep into the lived experiences of our bodies, that questions the idea of normal, the notion of cure, that values self-determination, that resists shame and the medicalization of identity. In the end I want a politics that will help all of us come home to our bodies. In the end I want to sing you a love song, except I don’t sing, so one last poem will have to do:

TWO WATERS
for Samuel Benjamin

This place where two waters meet,
we lay our bodies down,
sky folding over us. Stories fall like rain,
spar trees weathered to bone.

We lay our bodies down,
bones beginning to breathe,
spar trees weathered to bone,
words shimmering into kisses.

Bones begin to breathe,
skin drips sweat, glinting,
words shimmer to kisses
layered in cinnamon and salt,

skin dripping sweat, glints.
Tell me a dream, and I’ll tell you a vision
in cinnamon and salt, newly turned dirt:
a child turning to river, to wind, to boulder.

Tell me a dream, and I’ll tell you a vision,
years measured in miles and miles in grief.
A child turning to river, to wind, to boulder:
he learned to walk a knotted road.

Years measured in miles and miles
spun to smoke, to mist, to motes of sun.
He learned to walk a knotted road,
and in its place we wake, grief

spun to smoke, to mist, to motes of sun,
my hands playing their unsteady beat,
tremor to skin, we wake
the warm hollow center,

hands dance that unsteady beat,
this place where two waters meet,
the center waits warm and hollow,
sky folded over, stories falling like rain.

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Eli, this is amazing as always. I'm so sad I missed your keynote. I don't know whether it's fitting or ironic that I have no words to tell you how evocative and powerful your writing really is. I guess all I can really say is thank you, for sharing your words with us over and over.

Eli-

I wanted to say how unbelievable this was to hear. You have a talent beyond that which I can describe, to touch people with words. Thank you for you keynote with it's gentle lessons and reminders of those basic things we call humanity.



Eli,
I wanted to say thank you for posting this here. I was there and witnessed this speech. It was moving then and moving again to read it and could hear you as I read. You are talented.

I didn't hear this in person; thank you so much for posting it here. Even without your voice and immediate presence, the words hold a great deal of power. Thanks again for making it available.

Thank you for posting this.
Those poems were...incredible.
Thank you.

I'm sorry I missed FORGE and your speech. I was sicker than a dog. Your book, Exile and Pride, was required reading in my Queer Theory course in college and I intend on using it in my own classroom in the Spring, 2008. Thank you for posting your keynote!

thank you soo much for posting this.

This is really amazing. Thanks for posting it.

Thank you so much for sharing some of your experiences and feelings. The poetry and words were all very moving. Thank you.

Eli, thank you so much for speaking and for reposting the words. I feel so lucky that I was able to be at FORGE to hear you speak and be amidst lots of really fabulous people.

Thanks - this is the best thing I've read on this message board for a while. I really appreciate it.

Eli,
thanks so much for posting this...its amazing

this was completely amazing.

and.. hey wow, you're on livejournal! :) i met you briefly at the last two ftm campouts at cauldron farm. i'd love to add you, may i?
-Lee

That is a beautiful and powerful vision. I can get down with that. You ARE a poet.

I've been a fan of yours for a minute actually, since a friend turned me on to some of your writing. I put some of your keynote from the Queer Disability Conference in 2002 in a zine I made called SEXABILITY. If you want a copy please let me know.

If you ever come thru LA, or want to, I'm part of an ongoing show called Trans/Giving for trans*, genderqueer, and intersex artists, performers, poets, musicians and our community. I would love to have you come share with us. My email is iracethewind@yahoo.com

appreciation and love
Dan

Thank you so much for posting this (and for writing it and speaking it). I've been meaning to e-mail you to ask for a copy. After hearing this at Forge pieces of what you said keep popping up in my mind and I wanted to be able to go back and remember EXACTLY what you said - and now I can! It was great seeing you last weekend and I hope it won't be too long before we meet again.

Galen

The parts I can't stop thinking about:

"Intimate and risky, and yet what would disclosure look like if trans communities shaped a politics around self-determination, rather than privacy?"

"If trans people took up this disability rights lesson and defined ourselves on our own terms rather than through the lens of medicine, we’d still care about finding good doctors and getting good medical treatment, but our bodily truths wouldn’t ultimately be medical truths."




wow, powerful writing. I found your blog through bear's. I hope it's okay if I add you--I heard you speak at a CLAGs conference a few years ago and thought you were (are) awesome. "Explain to me your hands resting..." just wow. thanks.

Thank you for posting this! I was not able to be there, since I was reading in Madison that night, but -- I am so happy I got to meet you in person at the conference anyway. I have been wanting to.

Powerful and a stimulus to thought...

wow...thank you

this makes so much sense.

it gives a coherent voice to a lot of the disassociated thoughts I've had running through my mind about transness (but coming from a place of disability rights ignorance) and our bodies and identities. I've never understood why so many would self-identify as defective and disordered

I can't help but feel like the general trans community has such a long way to go. self-determination is exactly it... it's so lacking in our communities. in 2007, we still hope to find meaning and validation and acceptance through medicalization, diagnosis, and pity.

well..
once again, thank you for the inspiring words :)

-an interloper transgirl >_<

(Deleted comment)
Hi, I found your writing through a link on strap-on.org.

Thank you for writing about and linking dis/ability with trans issues. You've added a courageous, insightful and politically powerful voice to the topics.

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