Photo: Stephen Kuusisto, Connie Kuusisto, Tara and Ross Connell, and guide dog Corky outside the Oprah Winfrey Studio in Chicago, March, 1999
14 years ago I appeared on the Oprah Winfrey Show and experienced a tabloid beating of a kind one would customarily imagine is reserved for perverts or church thieves. My first memoir Planet of the Blind had been published to critical acclaim by reviewers but faster than I could say “sassafras” it was pegged by the TV industry as a book about secrets. This was because “Planet” describes the interior struggle of a child and adolescent who seldom speaks the word blindness in public. The book does not say he never said it, in fact he said it many times, almost always to no good effect. Every disability is a Rococo picture frame of tangible and intangible words, phrases, receptions, welcomes, and discriminations—but no matter what you say about the “D” word, its never an either/or affair.
Oprah dumbed the book down by insisting my life was a lie until I “came out” as blind. But I was always “out” as blind—what I lacked was a means to live successfully, which is of course what the book is about. I was essentially bushwhacked, pole axed, salted, and stuffed by a gaudy, fluorescent host who seeing I wasn’t going to “play” salvation-victim asked me if I knew what color she was. Ghastly. I couldn’t wait to get out of there.
Non-disabled people imagine, down deep, that disability is caused by a state of mind. If it isn’t then the world must be unlucky. In America no one can afford to think about luck or the lack of it. Its much easier to adopt the position that the blind, the deaf, the paralyzed, the autists are all insufficiently honest—for honesty, (what Oprah imagines as “coming out”) will “set you free” as she’s so fond of saying. Whenever I said the word blind as a child or teenager I was told to vamoose. Even in graduate school at the University of Iowa an eminent professor of poetry (Sherman Paul) told me I couldn’t be in his class because of blindness—a shabby cruelty that was hardly unfamiliar but caused me to weep all the same. Professor Paul is now most likely in the Greek underworld reserved for dead scholars and nowadays, some twenty years later, we have the Americans with Disabilities Act which the old fraudster wouldn’t have liked, but the point stands—honesty and disability are not soluble, co-determinate passes to the Big Top Circus of Able-Bodied-ness and “coming out” has almost nothing to do with freedom if you’re disabled. This is because disability is not reducible to a state of mind or a simple matter of self acceptance. Architectures and failures of accommodation create disability—and let’s add failure of community spirit while we’re at it.
I said coming out has almost nothing to do with freedom because no sensible person would say self-acceptance or political awareness have no relationship to autonomy. It matters what you call yourself. Still freedom isn’t what John Lennon called “Instant Karma” as freedom in America is economic freedom—a deliverance people with disabilities have not yet achieved en masse. In turn when speaking about disability honesty requires a firm acknowledgement that liberation is more than a matter individual narrative or feelings of self-worth.
Oprah did me wrong. She’s never been good with disability. Her failings are more significant than her triumphs. If you think a good state of mind is the ticket to liberation in America you must forgo considerations of economic determinism and exceptionalism in late stage capitalism and the wholly inadequate American story of “up by the bootstraps”—tabloid TV.