Category: Uncategorized

Oprah, Disability, and Tabloid TV

Stephen Kuusisto at the Oprah Winfrey Show


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. 

 

     

 

 

 

Disability in the Academy

Its a truism perhaps but having a disability possesses significance because of its permanence. Your blindness or paralysis or autism isn’t going away anytime soon and though it might someday (especially if you believe marketing from the cure industry) holding your breath is both risible and injurious. Keep breathing. You’ll feel better. If you keep breathing you’re at least guaranteed to feel something. 

 

I work at a big university where I’m a senior faculty member and an administrator. Students and staff who experience disability problems often seek me out because they’re having trouble with transportation, parking, information technology, bathroom access, you name it. One side effect of being a disability advocate is that you often earn unjustified eye rolling from non-disabled colleagues. “Here comes Kuusisto again, saying we’re not up to snuff with accommodations.” I know this is true, though of course I don’t know precisely what’s being said about me. “Here he comes again!” 

 

Non-disabled people don’t really understand that disability means permanence. Its not like a week on crutches or pregnancy. Crutches and pregnancy are situational and while they’re entirely inconvenient, they’ll go away. The permanence of disability means, among other things, that barriers to access are a daily feature of life and the eye rolling and obstructive bureaucracy is routine. When you throw away your crutches your difficulties with architecture and bathroom stalls come to an end. When you’re blind with a guide dog and the restroom doesn’t have accessible facilities the impactful disregard for human variability never comes to an end. For wheel chair users the malfunctioning automatic doors and badly constructed ramps (or the absence of ramps) never comes to an end. For deaf people the absence of sign language interpreters or CART never comes to an end. Around it goes. 

 

The eye rolling would be easier for me if I had a misanthropic streak. But the truth is, I like people. I like them quite a lot. I went into teaching because I enjoy young people and admire my elders—or many of them. (If you teach in higher ed long enough you’re likely to meet Professor Polonius or Dr. Fraud, and you slowly learn not to share your cucumber sandwiches with them.) Still, sharing books and probative ideas is a critical aspect of what I do for a living and its made easier because I like human kind.          

 

Historically, people with disabilities in the United States entered public schools on the coat tails of the landmark Supreme Court decision Brown vs. Board of Education. By desegregating schools the Court opened the doors of public education for the blind, the deaf, and people with learning disabilities. I am a first generation “mainstreamed” disabled citizen whose education was made possible by that momentous civil rights victory.  As a result the schoolroom has been the life-long instrument of my citizenship.              

 

In my memoir Planet of the Blind I describe learning to read with the help of an African-American teacher who put in the extra time to make certain I achieved literacy. She pushed me into writing. Therefore in my own teaching I challenge my students to write with firm control of content and form. In a paper assignment I may ask students to explore the formal elements in Auden’s elegy to Yeats because the exercise will help them see how the lyric component of the poem is central to its political and psychological contents.

 

Creative writers and theorists who have concerned themselves with the experiences of historically marginalized people influence my teaching. I aim to show students how inherited figurative language may itself become an obstacle for the writer or at least for his or her imagined characters. Raymond Carver’s story “Cathedral” comes to mind as a teaching tool. In Carver’s story the miserable working-class “sighted” narrator guides a blind man’s hand across an oversized sheet of paper in a sympathetic effort to show the sightless man what a cathedral looks like. 

 

I am engaged by what the critic Lennard Davis has called “the construction of normalcy” in the area of Disability Studies. “Normalcy” can be understood as an economic construct of 19th century industrialization. In this kind of analysis no one is normal enough for the factory and no citizen is taught the language of self-identity. In a course on the contemporary memoir I demonstrate for students how Nancy Mairs (who has multiple sclerosis) argues with our culture’s assumptions about the role of women and the value of the disabled. Additionally I strive to show students how a memoirist’s concerns are informed by Feminist Theory, Queer Theory, and African-American Theory and Literature. The memoir is a synthesis of statements about identity whether the writer is Dorothy Allison, John Hockenberry, Paul Monette, James Baldwin, or William Styron—all are engaged in the progressive art of expanding the social parameters of belonging in America, even as they must address the ironic difficulty of that very enterprise. 

 

As a poet and writer of creative nonfiction I hope to demonstrate how imaginative writing transforms the received and static forms of personal language and plot. In turn I aim to show students how to find new and releasing autobiographical material. The art of memoir resides in talking back, but hopefully the memoir or poem or personal essay will become an alchemical romance both for the reader and the writer. I find that I spend a great deal of time “listening” to students both in the classroom and in conferences. Of course in a very literal sense I sometimes need students to read aloud for me a revision of a text. “That’s odd,” I’ll say, “can you hear how you’re saying that?” Ironically blindness often allows me to focus a student’s attention on the emerging or instinctual subject of a poem or essay. At such moments my hearing conceives just beyond a student’s rising music the possibilities for a better line, or a newer theme that still remains to be explored. I try to show my students that where imaginative language is concerned one must cultivate a passionate curiosity about the word—a curiosity that only further writing and “revisioning” will satisfy. I hope I can help them hear their better voices.

 

The problem for those of us with disabilities is that the permanence of physical or neurological difference is unbridgeable and the built environments that occlude or obstruct our progress are still omnipresent. The Americans with Disabilities Act told us boldly to come into the village square or the agora. We’re here. We like our colleagues. We want them to like us. We feel sad about the eye rolling. The good news? Eye rolling can be a temporary condition. 

 

 

 

 

 

 

 

 

 

Prose Poem for Michael Meteyer

Prose Poem for Michael Meteyer

 

 

Drank tea filled with inverted commas, the way Prokofiev liked it, at sundown, the elaborate snow filling the windows. I felt tenderness, wanted to bless the vines. Light vanished so quickly. 

 

If I was a classicist I’d write a panegyric about magical thinking but I’m not. Perhaps its enough to say I’m Orphic in my wrists—in ligaments the storms of childhood and old maps. 

 

More than once I’ve crossed open water holding on to torn sails.