January 2004

 

ON OUR OWN

Sometimes it seems as if independence is a topic we talk about endlessly in gay disabled circles. At other times we seem afraid even to raise the subject. If we ignore it entirely do we hope that, like the allied issues of health and money, the question of independence will resolve itself by some force of nature ? How we frame the debate reflects our uneasiness. On the one hand we proclaim how critically important living an independent life is, while on the other we retreat in the face of those obstacles that, inevitably, impede our progress toward an independent life.

These days our dialogue about independence is often couched in terms of assistive technology: if only we had the latest model wheelchair; if only we could afford the trendiest new computer (voice recognition software might be nice, too). Less frequently do we address the apparent paradox that, for us, a state of independence is dependent. It is dependent, to some degree at least, on the love, good will, and availability of other people. Maybe that's simply a way of describing interdependence, and a recognition of how little our culture values it.

In this month's BENT you will find three accounts that touch on variants of the larger issue of independence, how we define it, how we go about pursuing it, how we mourn its loss.

John Killacky's When A Wheelchair Means Freedom at first appears to center around nothing more than the acquisition of the writer's first wheelchair, a pretty straightforward assistive technology issue, or so it might seem. Killacky quickly makes clear, however, that his new piece of high-tech hardware is far more than a seat on wheels. Instead, it's hardware with a full complement of emotional accessories.

Only when his partner points out that using a chair might reintroduce into their lives the ease and pleasure of shared activities is John able to see it as a victory machine instead of a symbol of defeat. Hardware alone, no matter how efficient and well designed, is rarely the answer to the challenges of independence. In this case the useful machine needed to be combined with the support and encouragement of an essential person. Only then was the the machine's potential user able to regain a measure of the independence stolen from him by disability.

In Some Lessons from the Past Year, T.J. Boothroyd reflects on a year crammed with health crises. Living without a partner, he writes, he was able to survive a series of medical emergencies only with help from a group of loyal friends. Grateful for their support, Boothroyd nevertheless worries that their help defines a relationship where reciprocity is impossible, and thus a relationship that points to dependence on his part. It takes a straight, nondisabled friend to show him how wrong his thinking is.

Just as we were about to post this issue of BENT, Boothroyd's story took a darker turn, which the writer explains in a brief postscript. It serves as a reminder that our efforts toward independence, even when enhanced by the potent combination of useful technology and loyal friends, are often played out within the confines of a social system that remains deeply flawed, defined by injustice, and thus inimical to some of our best efforts.

BENT welcomes back Eleanor Lisney for a guest article titled On the Move Again: Independence and its Cost. Enormous personal upheavals (changes in place, profession, and marital status) pose the question of whether the writer's new life will be viable without the network of friends she has left behind. Fiercely independent, Lisney tries to overcome the initial vicissitudes of her altered life by impeccable planning and organization, an example of how we must sometimes play Super Crip merely to get by.

Thanks to negligence and ineptitude on the part of others, her efforts are sabotaged from the beginning. Like Killacky and Boothroyd, Lisney finds that her own initiative, forceful as it may be, can take her only so far without the emotional and practical support of others. She concludes by asking how much independence she can comfortably secure for herself while waiting for the natural process of community-building to take its course.

Understanding the word "interdependence," which I introduced earlier as an antidote to the negativity evoked by "dependence," is essential to understanding the deeper meaning of the three accounts collected here. As Boothroyd makes clear, he came to understand how interdependence works after first denying its possibility. Why is this denial so easy for us? Because, I think, we have few institutions or services designed to aid the communitarian-minded actions of individuals who want to help one another lead independent lives, but who need support for their actions.

Instead of our existing state-subsidized medical model of disability, a model that embraces institutionalization as a given, we need, at the very least, accessible and affordable housing and humane in-home personal assistance. Only with services like those in place can we pursue a realistic discussion of what it means to live independently.

© 2004 BENT

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Bob Guter has been a bilateral amputee since the age of six as the result of multiple birth defects. His writing has appeared in The New York Times, Stagebill, and other publications. With John R. Killacky he edited "Queer Crips: Disabled Gay Men and their Stories (Haworth Press, 2003). He lives in San Francisco where he publishes and edits BENT.