Sharon Wachsler*


It's always hard to define such a broad term as disability culture. It tends to be something that, like the story goes about the Supreme Court and obscenity, "I know it when I see it." However, I will take a whack at it.

Disability culture grew from the disability rights movement, and thus includes its tenets, such as that disability is socially constructed (as are gender and race) and that disability is normal - not aberrant. Paradoxically, disability culture espouses that people with disabilities have a unique, enriching perspective to contribute to the world. Thus, disability culture embraces both the normalcy of disability and the peculiarities of living with disability.

For example, there are three poets who come to mind when I think of recent literary work I've read that says "disability culture" to me. Each is very different.

One is Kathi Wolfe, who has written a lot about Helen Keller -- Helen Keller as she really was and also the inner life of HK as she imagines her to be. That's very overtly disability culture writing. However, a poem Kathi wrote that we published recently, "If I Drove Drunk," makes no reference to blindness except in the last stanza. It's a very exuberant poem, both in language and content, but part of the fun and irony of the poem comes from knowing that the narrator is blind, and thus driving drunk is only the half of it. So, I think that's a form of disability culture that I'd like to see appreciated and recognized more, which is the understanding of disability without it having to be spelled out: "This is about disability."

Yet, that last stanza does make some very overt references to blindness:

In a Braille parking lot,
I'd jump-start the dots,
stop-by Oz, take Dorothy
to Kansas, and sweet-talk
Auntie Em into giving me
a shot of Scotch. How's
that for a Helen Keller trick?

This also feels very steeped in disability culture because of its assumption of the reader's knowledge of disability culture or the life and history of disability -- Braille, Helen Keller, etc. So, that's a poem that brings forth disability culture writing in two ways.

Another poet whose work I adore is Margaret Price. Most of the poetry I've read by her is about cancer. Now, a lot of people (including people with cancer and those with other disabilities as well as nondisabled people) don't think of cancer as a disability or think of people with cancer as people with disabilities. However, Margaret's poetry about cancer embodies so much of life with disability: dealing with the medical establishment, treatments, hope, despair, and healing, waiting, trying to uncover the "truth" of the experience. Again, to me, her poems are essentially disability culture poems. A poem that we have just published of hers that is different from the ones that are overtly about cancer seems to me to be imbued with disability culture, even though it makes no reference to disability. "Drinking Saltwater" feels particularly relevant to people with chemical injury. As a person with multiple chemical sensitivity, I found it profound. I don't know if that is part of her history, but when I read it, that is where it takes me.

It begins

From birth we shared a freakish
gift: we could live on saltwater.

Right there are some major disability-culture bells ringing. First of all, freakishness is a huge part of disability history, and it is still a big part of disability consciousness for too many of us. It also turns what is essentially an injury -- needing to live on saltwater -- on its ear by calling it a "gift," which is something that PWDs need to do a lot.

Here are two more short sections of the poem:

. . . Like salt-poisoned cattle
we would stargaze, amble backward
and in circles. Sometimes we convulsed.

. . . This was not our dream of freshness.
This water's as thin as air, dragging
at our newly heavy limbs. It smells
of organisms, and tastes bloody, . . .

There's so much packed into these parts of stanzas, it's hard to know where to begin. There is the matter-of-factness of what is basically a brutal, painful way to live, which I think is a prominent aspect of disability culture -- writing, humor, art, etc. There is also the "bodyness" of it, the vivid descriptions of visual distortion, convulsion, the heavy limbs, the taste of blood, which also often plays a prominent role in disability culture. Finally, there is that element of surprise and loss, even shock, which I think is extremely common particularly in the writing of people with acquired disabilities -- i.e., people who became disabled as adults. That is one aspect of disability culture that separates it from most other subcultures (the obvious exception being LGBT people) where a person grows up with family, friends, and/or a broader community that also lives in that subculture that teaches you how to handle oppression or difference or prepares you in some way. Most people with disabilities acquired in adulthood are not prepared for being shunted into that severely oppressed class. So, that's a very common theme in writing by people with disabilities.

The third poet is Petra Kuppers. Her work is very self-consciously disability culture writing. She even titles her pieces so. One poem is called "Disability Culture." Her poems are peopled with dancers with canes and in wheelchairs, with "blind blokes" and "crutch girls." Her pieces often focus on the sensual aspects of disability -- the sounds and sights and touch of disability. For instance, from "Contact Improvisation," which I love, the first stanza:

Drags her foot, languid, with a stutter,
ankle sweeps the ground, a little vibrato on the toe
and she dances, her fingers float up, her chin down.

It's all so sensual and musical -- the stutter, the vibrato, the floating fingers.

Some other characteristics that I see again and again in writing by people with disabilities are (1) an intense, overwhelming desire to be understood and respected, and (2) a feeling of lack of choice, of restriction. It's hard for me to get across how pervasive the former theme is. There is really a deep and widespread desperation on the part of people with disabilities across the spectrum -- physical, cognitive, psychological, and sensory -- to be understood. This takes the form of wanting to be seen but not stared at; wanting real limitations to be accommodated but not being presumed to be incompetent or inactive; wanting empathy but not pity. I would say that this theme, which basically boils down to "treat me like a real human being" makes up most of the submissions we get. As a result, we only publish a few pieces on this topic because when we do, we want the writing to be especially skilled or the perspective to be unusual.

Todd Austin Hunt's short story, "Dr. Plato's Surprise," which we published two years ago, was immensely popular with readers and very well written. It shows the inside of a disability culture where not only do we have to fear how nondisabled people can hurt and pigeonhole us, but our peers can, too. Its narrator is a child at a hospital school. Although all the kids have disabilities, there is a pecking order, as this scene demonstrates with painful clarity:

"You're a freak!" Katie pointed at Willy's arms, then grabbed mine. "Look how ugly, white, and skinny his arms are!" she said to me. "He's just a little dead boy!"

Willy looked confused and hurt. His eyebrows pressed together, and he shoved his glasses against his face. "What?" he asked quietly.

Katie kissed me loudly on the cheek and then on the lips. At first I tried to pull away, but she held me tighter, and she was warm. "He's not like you, Josh. You've got a tan and big muscles and you're cute. He's not like you at all." Katie slowly turned to Willy. He looked up at her with shiny eyes. She flicked her hand in a scattering motion. "Go away, wimp. Go away, little dead boy!"

The other extremely pervasive theme, lack of choice, could of course apply to any oppressed group, as restriction of choices is part of the definition of oppression. In terms of disability, it can spring from the disability itself and/or from the barriers the external world place on us, be they physical, chemical, financial, or attitudinal. They can range from not being able to get a job to not being able to afford medication or other treatment to being shunned by family or friends. One subset of the lack-of-choice lifestyle is some form of imprisonment -- being hospitalized, institutionalized, or stuck at home -- which is common across disabilities (metal, physical, and emotional) and thus common in PWDs' written work. Breath & Shadow has published fiction and nonfiction on forced institutionalization (usually related to mental illness), essays about getting stuck on the toilet or stranded in swimming pools, and poetry about miserable hospital where the protagonist is in the dark about their own condition or treatments. Loneliness and alienation attend both types of "stuckness" and seem also to be pretty much universal in the disability experience and thus in disability culture writing. For example, from Eric Gadzinski's poem, "Van Gogh":

If you must be tortured
you ought to be talented.
Madness per se is not attractive -
the wards are full of them,
. . . and nobody goes there
except . . . once in a while
some friend or relation
who says something like
"Hi Bob, how are you?"
too loudly and leaves quickly.

No, what we approve, what we admire,
. . . is when agony can dance the pentameter,
. . . then dies so we don't have to
deal with the asshole, but
tut-tut about the pity
and applaud The Triumph
Of The Human Spirit . . .

*Sharon Wachsler is the editor of Breath & Shadow: A Journal of Disability Culture and Literature. In her role as editor of one of the first online journals in which both staff and contributors are all writers with disabilties, Sharon was invited by Wordgathering to discuss her view of disability culture.