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A matter of perspective
A review by Sally Rosenthal

Sally Rosenthal frequently reviews books for Ragged Edge

Venus On Wheels: Two Decades Of Dialogue On Disability, Biography, And Being Female In America by Gelya Frank. University of California Press, 2000. Softcover, 284 pages, $19.95. Order book.

Let me take you on a journey -- two journeys, actually. The more recent journey occurred the week after reading Venus On Wheels by Gelya Frank. I review lots of books; my method is fairly predictive. I read the book, and, depending on my reaction, I either dash my already-formed opinion down at once or wait for that opinion to crystallize a bit more before turning on the computer. Either way, my review is completed soon after having closed the book. Neat and simple.

Not in the case of Venus On Wheels. I knew as I read this cultural biography spanning two decades that my reactions were mixed and that there would be nothing neat and simple about writing this review.I found myself shutting the book and embarking on a week's worth of avoidance behavior. Finally, having run out of closets to reorganize and e-mail to answer, I wanted to admit that I had to come to some cut-and-dry conclusions about Frank's book. But I couldn't. And that uncharacteristic ambivalence was really troublesome. I wanted to be able to recommend Venus On Wheels to Ragged Edge readers. After all, it's the story of Diane DeVries, a woman born without arms and legs who survives and celebrates her disability. Sounds like perfect Ragged Edge material, right?

Well, DeVries might be, but I have some concerns about the book. And, to understand my concerns, we need to take another journey čback to the mid-1980s, when I was a middle-aged student in an occupational therapy college program that prided itself on including Frank's cultural anthropological approach to disability studies. To emphasize that disabled people lived full lives (given the right accommodations, environmental adaptations, support, etc.), students were given handouts of one of Gelya Frank's articles about her anthropological observation of Diane DeVries.

I had a mixed reaction to the article. As a woman with multiple disabilities, I was glad to read of DeVries' life, with its similarities to anyone's life, despite her own disabilities. Yet at the same time, as that same disabled woman, I felt a nagging sense of unease about someone else using another disabled woman as a "subject." Even back in the 1980s, I had a sneaking suspicion that an article by DeVries herself would have given me an ultimately fuller picture of living with disability in our mainly nondisabled culture. Would my mostly ablebodied classmates grasp what Frank and DeVries were trying to convey?

No, many of my classmates were not that astute. A faction of them had met with the department chairperson to complain that I, as a disabled student, was receiving accommodations that they did not. So much for changing attitudes through reading cultural biography.But that was then and this is now.

Almost 15 years later, I still have a sense of unease, but now I know why I am uneasy about Frank's work and her compilation of it in Venus On Wheels.

Perhaps you think that I believe that only DeVries should have told her story, that no one other than the person with a disability could ever be justified in telling the true story of disability. No, that's not it at all, for there have been a number of excellent books about living with a disability written by nondisabled authors. No Pity was written by nondisabled journalist Joseph Shapiro; and disability writing, in my opinion, doesn't get much better than Shapiro's book.The problem with Venus On Wheels is a matter of perspective -- Frank's and the culture in which the book is being published. I finished Venus On Wheels knowing much more about Gelya Frank than about Diane DeVries. The book is a compilation of previously published and new material by Frank, supposedly detailing DeVries' life and the way her disability has influenced it while still presenting it within the realm of human experience. "Supposedly" is the key word. What emerges from these pages is not a very full picture. We learn something of DeVries -- her background and her current situation -- but these snapshots are filtered through Frank's experience and perceptions. The isolated incidents of DeVries' daily life that Frank reports leave the reader wanting to know much, much more, about DeVries herself.

The format of a cultural biography, it's true, demands that some of the observer's attitudes, perceptions, etc. be included. But this book is too much Frank and not enough DeVries. And there seems to be little growth on the author's part about what life with a disability really involves.

Although Frank writes about her reactions to Diane and her circumstances, her understanding seems to remain fairly static. Her description of one particular dinner she and Diane shared, that, Frank says, seemed to be different since both of them came to it as women with jobs, is especially telling. Does this mean that when Diane was unemployed that she and the author had a different relationship? So much for all lives being equally valid.

An academic text, Venus on Wheels is not that rare book by an academic with crossover potential to a general readership. I'd wager that its readership will be mainly on college campuses, not among the general disability rights movement or the general reading public. For most of those college professors and students who pick up Venus On Wheels, it will likely be their first exposure to disability literature. Through no fault of their own, they will come to this book clueless; unfortunately, they will leave worse than clueless.To be fair, when Frank and DeVries began their collaboration over 20 years ago, setting out to make nondisabled people aware of what life with a disability entailed through portrayal of one life in particular, this "disability awareness" approach was valid. While such an approach had (and still has) the potential to turn its subject into an "inspiration" rather than a living, breathing, flawed-just-like-everyone-else human being, that was the state of disability studies at that point in time.

Today this is no longer a valid approach. The disability rights movement has long since moved beyond a model of disability awareness to one of disability equity. In the era of managed health care, shrinking governmental budgets, ADA backlash and physician-assisted suicide, disability awareness is a woefully inadequate weapon to use in a life-and-death struggle. Reading Venus On Wheels in 2000 is an oddly deja vu experience. While some of that may be explained by the fact that the book is a compilation of work done over a few decades, it still is problematic.

Venus on Wheels is a good idea gone awry. It could have been a pivotal book in disability literature. Instead, it is a book that is, sadly, somewhat out of touch and very much out of date.

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