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.
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
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
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.