Breath & Shadow

A Journal of Disability Culture and Literature




When Will I Dance Again?: Exposed and One Woman's Battle With MCS

Sometimes the only companion Katherine Devoir has is her camera, an unlikely living arrangement for a dancer and performance artist, but Katherine's struggles with environmental illness have turned her life from "privileged and white" to the isolation of government benefits and trying to regain more of her health, knowing that the medical establishment does little to acknowledge her "invisible" condition.

It's in the filmed segments of Katherine's story that Heidrun Holzfeind's film Exposed really shines, although she adds other touches familiar to frequent documentary viewers, such as mocking of both President Bush and the 1950s cultural myth of never–ending peace and prosperity in which science does battle with every minor annoyance and embarrassment while some deep, fatherly voice praises the new modernity.

But it's Katherine Devoir you'll remember, more than rapid–fire statistics about the dizzying array of chemicals that power (and pollute) America in the early years of the 21st century. I did not begin this project with any great knowledge of environmental illness, except that I knew a few women who struggled with the condition, and it gives me pause every time I get ready to go out to the independent–living center, as it is a fragrance–free zone and I'm a lover of scents.

It is one thing, however, to hear your friend tell you that "perfume makes it hard for her to breathe" and quite another to see video of the lovely Ms. Devoir, despite the freezing temperatures, washing her hair in a public parking lot because she is panicked about losing days or weeks of her life due to something she came in contact with at the dentist's office. Sometimes even those of us within the disability community do not always know what our brothers and sisters (in this case, mostly sisters . . . are women truly more sensitive, or are there chemically–sensitive men waiting for their "sinusitis" or "pneumonia" to clear up? I'll leave that question to more scientifically–inclined minds than mine) are going through. But any distance I was able to see between me and Devoir because of her former jobs, or her developing her disability later in life, or, to be completely honest, what I perceived as her drama–queen tendencies, vanished when she said, "The psychology of a human is to fit in and be a part of culture. We wanna have friends, have people like us, go out in the world, participate, be useful. When you're sick like this, that's all taken away." It may be a matter of degrees, or for different reasons, but Devoir has hit on a real commonality of the disability experience, though she shies away from applying the term to herself due to the "stigma" of receiving government benefits. But many of us have had to redefine our relationship to a world that was not (I suppose I'm a big product of the mechanized culture the film critiques, because the first word that came to mind was "designed”) created to fit us. Would it be easier to have any kind of disability in a world more oriented toward working in harmony with nature? Is it too late to find out? The portrait of American culture presented in "Exposed" is fairly bleak, but it's probably to be expected given Devoir's state of isolation and ill health. Overall, it's a solid portrait of one woman's experience with an unseen and misunderstood condition.

DVD copies of the film can be ordered through the Free Speech website, or from the filmmaker herself at http://www.exposed.at, for $25.00, including shipping. The film will be screened in N.Y. at MOMA on February 1 and March 15.

Erika is a wheelchair user, novelist and crime–fiction fangirl who lives in Phoenix, but has left her heart in San Francisco and her spleen in Baltimore. She hopes for creative success or the chance to wash out the coffee cups in the writers' room at HBO. Other goals include celebrating the election of a Senator for whom she voted, world peace, and the chance to direct. Feedback is her strongest addiction. Feed the craving at ejahneke@yahoo.com.

Tell us what you think about this author's work or about this month's issue in general. Email: breathandshadow@gmail.com

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