Snowshoes as adaptive equipment

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.

Imagine my surprise

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.

Whee

Confession time: About once a month I surf over to Amazon.com to see how my books are doing. Embarrassing but true. Tonight I found this link for the forthcoming Classics Edition of Exile and Pride. I barely recognize myself in their description. The timing is uncanny because earlier this evening I gave my editor at South End the first draft of the second of two new essays for this edition. Here’s a little teaser:

Eleven years ago in 1998 when I handed the finished manuscript of Exile and Pride to my editors at South End Press, I knew the gendered story I had just finished telling already trailed behind both my personal experience and the politics of the trans liberation movement. It was a true story, not one I wanted to abandon or disown, but no longer current, even then. Today do I try again, telling another, distinctly different, story about gender and race, class and violence, disability and sexuality, all crashing together in our tender, resilient bodies? Do I try to find another single, coherent narrative for myself that claims boyhood as far back as I can remember even as the doctors assigned me the categories girl and mentally retarded? Do I claim my current gender location as the most real? What happens when storytellers grow beyond stories to which they’re still connected?

I could tell you about being a white queer guy now, white privilege and men’s privilege wrapping around each other, learning what it means to be a man calling other men on their sexism…. I could explain, expose, trace the lineage of my gender as it has changed. Demonstrate how language, politics, and perception have shifted around it. Wrestle some more with nature and nurture, essentialism and social construction, rigidity and fluidity, binary and continuum, and how these ideas roil through cultures, histories, and communities. I could tell this story as if this moment, this body, this gender were an anchor.

But how do I write about change itself, a story of verbs—transform, crack, melt, resist, transmit, contradict, choose, translate, repeat, shift, yield, yearn? Don’t get me wrong: I’m not saying everyone’s gender is fluid, but even if your gender has stayed as steady as a boulder left behind when the glaciers retreated 10,000 years ago, your body has changed over time. I want a story that narrates the span between 15-year-old girl and 80-year-old woman, between 10-year-old sissy boy and 45-year-old cross dresser, between transgender butch and genderqueer trans man.

Happy Day

This is another mundane post about daily life, this one about the trials and tribulations of a crip who has growing repetitive stress injuries, mostly tendinitis connected to my cerebral policy, that make typing sometimes uncomfortable and always slow, and speech that is slurred enough to make speech recognition software always more than a little frustrating. Today is a happy day because I’m dictating this blog post using MacSpeech Dictate. Don’t misconstrue this post as an endorsement or advertisement for this particular piece of software. But if this software proves itself as good as the initial trial is being, it will change the way I use a computer a lot and for the better. So I’m cautiously happy and hoping not to get frustrated with this software as I’ve gotten frustrated so much in the past by speech recognition.

Of course as mundane as this is, it is also connected to really deep and important issues about impairment, ableism — a word that the software obviously did not know — and disability. One of the sessions that I went to at SDS last summer was about a speech impairment and different modes of technology to either enhance or make possible communication, some of the strategies responding to impairment and others resonding to ableism. The panel of people who spoke included quite a range of different kinds of speech impairments. I ended up feeling very emotional and not very articulate or analytical about what I heard at the time. So many bits and pieces of what some of the panelists talked about struck personal chords, but those chords are very fragmented for me. Mostly now as an adult my speech is understood, or if it isn’t, then the miscomprehension, or the unwillingness to listen to a crip with slurred speech, doesn’t have a big impact on my life. But as a child I struggled with communication a lot, needing translation, facing harassment, and dealing with harmful assumptions all of the time. So listening to the adults on the panel, all of whom were talking about current strategies and the current twine of impairment and ableism in their lives, was really about remembering my past that is loosely connected to my present but not to my actual day-to-day present. Emotional but in ways that I’m still not being able to describe very well.

And this isn’t even beginning to think about the issues of being a writer for whom the act of fingers, or more precisely one finger, on a keyboard is the physical action of writing. If speech recognition works for me this time, how might it change my writing? It’s funny how these questions seem inconsequential because they are about impairment, not about ableism. And yet don’t I know all too well that the sheer physicality of our bodies has to be important too?

Being in Community

A week ago I presented at Access Living, a big Center for Independent Living in Chicago. The room was full of people–disabled people, queer people, trans people, lots of folks who crossed all those categories. It is always so good for me to bring my work to my home communities. I am so often working in rooms with only a few crips and/or a few queers and/or a few trans people. Those are also good, important rooms but so different than last Friday. I have nothing profound to write about the experience. I just get so fed by being and working in my home communities. And we had brilliant conversation about being victims vs. being survivors vs. reclaiming our bodies.

Busy, busy, busy

I am so clearly in the middle of Fall semester, trying to balance the class I’m teaching with prepping for upcoming gigs–University of Illinois, Access Living in Chicago, the New York State College Health Association conference, Syracuse University, the Translating Identity Conference, UC Davis, and University of Alberta, all happening between now and November 22–with writing two new essays for the re-release of Exile and Pride. The writing is being slow, odd how writing about losing home was, 14 years ago, hard because it was so raw and tangible and how writing about finding home now is hard because it is so quiet and ineffable. All of this is to say, and maybe explain, the obvious: I’m neglecting my blog, but really, it’s a temporary condition.

Take Three on Cripple Poetics

I’ve long been fascinated by the dialogue between writer and reader, by the reader who says, “I want more from you,” and the writer who says, “This juiciness, this heart, this density or dance or lovely flight, is what I have to offer you right now.” I’ve certainly been on both sides of this dialogue. And now I find myself in dialogue with Neil Marcus and Petra Kuppers, the authors of Cripple Poetics, about my discussion of a passage in their book.

One of the points Petra makes, and rightly so, is that I misquote the passage that I’m analyzing. I want to correct that. So here’s the whole passage from Neil (pulled from a longer prose poem called “The Question of Cripple”):

“Neil writes:

when you call us crips
I can’t see or feel your ‘wink’
when you refer to me as a vegetable

or im vegetative
i feel more at ease

is there any humor in crip

maybe wry crips

is our history similarly known to ourselves or the public
as african americans is known

not yet

then why do we borrow a nigger equivalent–is it?–use
of oppressive term for ownership of power

this is my poorly developed opening discussion
even tho im nitwit –not without wit–”

So that’s the whole quote with line breaks. And now I want to go for the nuanced reading. (For a poet, I’m quite a literalist; I miss metaphors and puns and layered nuance all the time. It’s one of my weaknesses as a reader.) I’m struck this time by:

Neil’s playfulness in “wry crips,” which was also the name of a disabled women’s (I think?) theater/storytelling group in the 1980s in the Bay Area, and “nitwit.” This wide ranging exploration of cripple includes this playing with language.

“Our” and “ourselves” can be tricky, elusive words. Who is referred to in the line, “is our history similarly known to ourselves or the public”? I know why I assumed that “our history” means disability history and that disability history is being conceived of as white. My assumptions came partly from the juxtaposition of the very next line, “as afrrican americans is known,” making a simile between “our” history and African-American history. And my assumptions came partly from observing myself and other white activists/cultural workers all too often use “our” to mean white and to make similes with the experiences/histories of people of color. But still in Neil’s line, which singular history is “our history”?

The line “not yet” sits all by itself. Is it meaning to say that “our history” isn’t yet known in the ways African- American history is already known? Clearly that was my earlier reading, and part of my contention was that I don’t believe African-American history is known in such a definitive way. But could “not yet” also be questioning how well both histories are known and undercutting the simile that precedes it? Possibly.

Could I read “not yet” forward, and have it mean that we (who is this we?) haven’t yet borrowed cripple as “a nigger equivalent”? Possibly.

And finally the question, “is it?,” is the most ambiguous two words in a passage characterized by Neil’s spare and dense use of words. I want to explore that question, want to know how different kinds of hate language are connected or not or both. I need the word equivalent to be interrogated. Right here, right now, as a reader, I want/need more from Neil and Petra to entirely trust those two ambiguous words, “is it.” Neil writes in his response to my earlier post, “In the real world sense, would it be too much to suggest that the word “crip” comes from “nigger” a kind of ‘shorthand’ a reference no matter how thoughtless used commonly. Is it thoughtless? or is it a powerful statement? This is what im asking.” If crip does come from nigger, how do I read the word equivalent? How do I tie the very different histories of the two words together? And in this formulation, what happens to people who have been bruised by both words? Inside the book/poem, I have to strain to read/hear all this nuance.

In the end, I am a greedy, literal reader: I know that about myself. I can also be a grateful reader. And I hope my gratitude for Cripple Poetics and for Neil and Petra’s work is also clear and present.

Thinking About the Word “Retard”

For weeks now as all the controversy around Tropic Thunder has developed, I’ve been rolling around thoughts, trying the figure out what I want to write. Here are some initial thoughts:

Crip Chick is so right on about intersectionality, there’s nothing left for me to say.

–What I think about the construction of the phrase “R-word” is completely influenced by Emily Bernard’s incredible essay, “Teaching the N-Word.” I’m wildly ambivalent about the turning of hate language into euphemisms–n-word, b-word, f-word, and now r-word–that somehow are to protect marginalized communities from the pain of hearing those words yet again and privileged peoples from having to repeat the violence. There are two pieces to my ambivalence.

1) The violence has already been done. The damage won’t be rectified by a refusal to say the words. In our activism and analysis around hate language, we need to be vigilant and conscious about triggers and re-creating the power dynamics put in motion by hate language, but I’m not sure that euphemistic substitutions for hate language is a good stand-in for vigilance and consciousness. At the bottom of this part of my ambivalence is a sense that the “r-word” construction is designed largely to protect those of of us who have been battered by the word retard and by the institutional, material, and attitudinal realities that come with it. As one of those people bruised by the dismissiveness, hatred, and physical violence of retard, I don’t need protection; rather I need compassion, rage, allies, and an end to ableism.

2) The “r-word” construction mirrors the “n-word” construction, which precedes it. I don’t know from where the “n-word” construction originates nor what mix of opinions/feelings/thoughts Black people have about it. But whatever the origins, the mirroring of the two constructions communicates that retard and nigger function in the same ways as hate language and carry the same violence and that all the repulsion and outrage white people supposedly feel upon hearing the word nigger should also be felt in the same measure by non-disabled people upon hearing retard. Here again is analogy failing to do the deeper work of intersectionality. Certainly racist hate language and ableist hate language share much in common. (The ways the word monkey has been used against disabled people (both poc and white) and people of color (both disabled and non-disabled) highlight these commonalities.) But there is so much historical and present-day difference between the usage of retard and the usage of nigger and such a lack of real anti-racist work among white disability activists that the analogy reads to me like white people appropriating the political work of Black activists yet again. The analogy sidelines Black disabled people’s experience, and assumes that disabled people are white and Black people are non-disabled. And the question isn’t asked: how does the snarl of hate sound in the lives of disabled people of color?

–Call me a crank but the Special Olympics “Stop the R- Word Campaign” makes me pause. Don’t get me wrong, organizing around retard as hate speech and even protesting Tropic Thunder as a specific cultural example of the use of ableist, as well as racist, hate speech is important work. But since when is the Special Olympics about justice for cognitively disabled people? For many years that organization has been one of the biggest creators of super crip images–that is “heroic” disabled people “inspiring” audiences with their “bravery”–and and have often fanned the flames of pity with its charity-model fundraising. Even the name Special Olympics sets up a charity-model context, rather than a social-justice-model context. I believe that an organization that frames disabled people as inspirational and/or objects of pity is also setting the stage for the unquestioned use of retard. If the Special Olympics is serious about its r-word campaign, it has a lot of internal work to do.

–The image below coupled with text from the Special Olympics website that says, “Historically, we have seen the elimination of other negative stigmatizing words through awareness and education campaigns and societal pressure. We no longer tolerate calling blacks, Jews, Chinese, physically handicapped, homosexuals, or Hispanics by the words nigger, kike, chink, crip, faggot, and spic, respectively,” frankly pisses me off. I want to say, “Oh, really.” What presumption to try to persuade people to take action regarding ableist hate speech by claiming that the the struggle against other kinds of hate speech has already been won. Presumptuous, naive, and privileged, I say. And to suggest that the Black, presumably disabled women in this image don’t hear the word nigger, at least occasionally, while using their images in the struggle against retard is so suspect on so many levels.

Two dark skinned young women stand next to each other dressed in shorts and tank tops with medals hanging around their necks and smiles on their faces. The headline next to them reads, 'R-word is hate speech.'

Two dark skinned young women stand next to each other dressed in shorts and tank tops with medals hanging around their necks and smiles on their faces. The headline next to them reads, 'R-word is hate speech.' Protest poster found at http://www.selfadvocacy.org/pdf/SpecialOlympics_ProtestSigns2.pdf

Adirondacks Cycling Adventure

I’m just back from a five day self-supported cycling and camping adventure in the Adirondacks. And I know, I know I have better topics to write about–the whole Tropic Thunder disgusting mess and the related “R-word Campaign,” about which I have many opinions–and more pressing projects to work on–writing a syllabus for the Trans Identities class I’m teaching starting in three weeks–but I just want to write about pedaling today.

As a side note, this of course has very little connection to the main topics of my blog–writing, disability, queerness, trans identity, and social justice–except there is a tangent. I cycled hundreds, maybe thousands, of miles on the back roads of Oregon when I was a teenager. I was more or less inseparable from first my single speed upright bike and then my Schwinn ten speed. But when I moved to Portland to go to college, I left my Schwinn behind because I knew my cerebral-palsy-tippy balance wasn’t good enough to safely navigate city streets. Now 25 years later I have a recumbent trike, dubbed the Red Crab, and once again I’m riding the back roads, practically inseparable from the sheer pleasure and motion of pedaling. So I could stretch and say that I’m writing about crip recreation.

Anyway my sweetie Samuel and I have been on several multi-day rides (read about cycling in Oregon and around the northern part of Lake Champlain part 1 and part 2) but never a camping trip where we carried all our gear.

The biggest surprise was how friggin hard the hills were on a trike loaded with 40 pounds of clothes, food, sleeping bag and pad, tent, and sundries. I was huffing and puffing, particularly because our loop took us 80 miles into the Adirondaks, so we had a lot of climbing in the first two days and a lot of descent in our fourth day.

The wackiest campground was Poke-a-Moonshine, a state park that’s squeezed between Interstate 87 and the massive miles-long cliff face of Pokamoonshine Mountain. It had some attributes of a great campground–almost empty, great hot showers, a campsite shielded by a 20 foot high boulder, an easy trail up to the cliff face–and attributes of a lousy campground–freeway noise all night, a park ranger mowing grass for hours near our campsite, mosquitoes galore. At some point I woke up in the night all worried about raccoons and our food until the freeway noise reminded me that of the two problems–coons potentially eating a day-and-a-half worth of food (didn’t happen) and carbon-emitting, planet-destroying vehicles roaring by in astounding numbers even at 2 a.m.–only one (the latter) really warranted worry, and then I fell asleep again.

The best road was a paved logging road called Forestdale–quiet, green, rolling, no traffic–perfect.

The most notable vehicle was the dump truck parked in a ditch, thistle, chickory, and grass grown high around it.

The biggest adventure was when the paved Stracksville Road turned into hard-packed sand and stone, went straight up for a mile, descended a bit, turned softer, then turned to an impassable two-track. We backtracked, took another marginally passable two-track, on a hope and crossed fingers, to avoid a long sandy descent, and two hours and six miles later we were back at the point where we turned on to Stracksville. It was an adventure and demoralizing. I got reminded about how much of long distance, endurance activity–hiking, running, cycling–is mental, how I can psych myself in or out, have fun or be miserable on the same road with the same legs and same weather just depending upon my state of mind.

And the many moments of joy: fresh pumpkin pie, sweet peaches, loons on Buck Pond, rolling along side the Ausable River, dipping my head into an unnamed creek, watching the moon rise over Lake Champlain, sleeping deep in a cocoon of a tent with my sweetie, feeling my quads and gluts work the miles, Ben and Jerry’s ice cream at a Mobil Station in Peaseville, swimming in Buck Pond and Lake Champlain. It was good.

Bread and Puppet

I went to see a Bread and Puppet show–the Sourdough Philosophy Circus–this weekend for the first time since I moved to Vermont almost six years ago. B&P is an institution here, and going to Glover to see a show has long been on my list of must-do-fun-day-trips. And I did have fun. I adored the Cheap Art bus; the barn/museum full of puppets, masks, murals, banners, stories, history (imagine an old musty timber frame barn stuffed with three decades of props from political street theater); the stork and cow and zebra and turkey masks/costumes of the current show; and of course the stilt walkers/dancers.

At the same time I kept expecting some queerness to appear in the art, the circus, the politics. I mean, it was all so resistant of capitalism, war, consumerism, greed with such an ethic of outlandish/outrageous creativity, all so bent, so queer in the general sense of the word, that I kept being surprised by the lack of specific queerness. I know white Vermont hippie culture, out of which B&P grows, is quite heterosexual; but probably because of my time with the radical faeries, where queerness, drag, outdoor community, and theater merge in a myriad of ways; I really did expect some flavor of queerness to rise to the surface. It didn’t.

On the other hand, I’ve come to practically expect racism and ableism at these kinds of events, and unfortunately my expectations were met in this regard. One of the performers in the circus yesterday was a woman of color and manual wheelchair user. Her roles–passive, limited, using her so clearly as a token woc–had me just shaking my head in disgust. For one, there were no attempts at creating any access in the performing space–a bumpy, slightly soggy pasture–leaving her to wheel over the lumps and softness and perform all at the same time. For two, she was totally not present in the big group song and dance numbers. (Has no one from B&P heard of or seen integrated dance?) For three, in one number she rolled out, followed by a white guy who held a sign saying “Ethiopia” over her head, while other white people in masks performed a dance about how the U.S. gives much more military aid than food aid to Ethiopia, and then at the end when she spoke about this disproportionate aid, the sign holder repeated her, as if the audience might not have understood or heard her. Arg! It was simply a big tangled wad of ableism and racism. And I was dismayed but not surprised.

I’m struck by the contrast between the ways I was surprised by the lack of queerness and the ways I was not surprised by the racism and ableism.