I sat down with celebrated author Stephen Kuusisto in the fall of 2008 in Iowa City, Iowa where he lives. I had read his first book of poems, Only Bread, Only Light, and his two memoirs, the hugely popular Planet of the Blind and the recently released Eavesdropping: A Memoir of Blindness and Listening. I had also read his completed new manuscript of poems, Mornings with Borges, forthcoming from Copper Canyon Press in 2010. Having already met Steve when I invited him to give a reading and workshop at Grinnell College, I was familiar with his old guide dog, Vidal, who had just retired, but not his new dog, Nira, who seemed a paragon of affectionate placidity and navagational competence. Over several cups of coffee, we spoke about a great many things but kept circling back to questions of the lyric mode and its usefulness to the project of disability studies. Steve is a wildly energetic man, learned, unbelievably funny--a kind of walking surrealist. Think Johnny Carson meets Andre Breton meets the entire library at the University of Iowa, where he teaches in the graduate nonfiction program and the eye clinic at the medical college. He is also a passionate activist working on behalf of those with disabilities. A truly public intellectual, he has appeared on countless national and regional TV and radio programs, including The Oprah Winfrey Show, Dateline NBC, and NPR's Talk of the Nation.
R. S. At one point in Planet of the Blind, while birding with a friend, you pretend to see a goldfinch "hopping up and down"--"jumping," you write, "like a penny on a railroad track." The scene underscores your proclivity as a young man to try to pass as sighted, but it also points to an aesthetic philosophy. Not wanting your outing together to become an "exercise in description," where your friend reveals in exacting detail what his retinas take in, you decide to "fake it with binoculars, gloating over imaginary blue jays." It seems to me that Planet of the Blind inverts this outing while shouldering a similar worry. The reader is out birding with you, the blind author, and is thankfully spared an "exercise in description." Meticulous verisimilitude is thrown to the wind, and analogy (what might be called the practice of blurred distinctions) takes over, paradoxically allowing us to see the world more clearly than mere sight allows. You say this explicitly when you remark about your early writing, "Exploring what words can do when placed side by side, I'm starting to build the instrument that will turn my blindness into a manner of seeing." And you come back to this very situation of the blind and the sighted in the title poem of your forthcoming collection, Mornings with Borges. The mother of a friend used to walk with the great poet and relate what was before them. "Then," you write, "the poet would tell her what he was seeing. Wingless angels with glass eyes; a book lying open from which a sequence of numbers arose and walked like those pocket-sized dogs favored by the wealthy." Borges is said to "provide solutions to the incitement that is blindness." Is your own "solution" to this problem something like a counter-imaginative incitement?
S. K. It's interesting to me that college English departments are talking these days about "visual literacy" as though optho-centrism, or the photographic metaphor for seeing, offers in effect an unquestionable and dominant script for cognition and imagination. Poetry is often concerned with things we cannot see as Federico Garcia Lorca or Dylan Thomas will tell you. "Association" in surrealism means putting things side by side that don't belong together logically--"the sewing machine on the operating table" or a horse galloping across the face of a tomato--to borrow from Breton; poetry raises this quality of the illogical to a higher level by insisting that there are states of mind, of perception really, that can't be represented by stable, figurative imagery. In one of his poems, Robert Bly describes people trapped in poverty by saying, "They live in the casket of the sun." That's arguably an image that can't be drawn or painted. And yet, somehow we know what it means. It has a grounded electrolysis of emotion about it. My experience of poetry is influenced by that "casket of the sun"--in Planet of the Blind I say that my version of blindness is like lying on your back in an ice cave and staring up at the cobalt sun. That's both an analogy--blindness is "like" something else--but it's also a surrealist association--for indeed blindness is also unlike anything we might say about it--in an optho-centric world blindness is essentially unknowable to people. This ironic position is what makes poetry interesting, and Borges saw that. His labyrinths are not places you can see, but you can walk in them and "know" something from the navigation. Poets aren't journalists, and those poets who have studied Dada and Surrealism aren't concerned with Pound's "Imagism"--we're not trying to create a photographic image in poetry. And that's a liberating sequence of ideas especially if you can't see the world like a Life magazine photographer.
R. S. This type of seeing, fueled as it is by the imagination, seems intimately connected to your other senses, especially hearing. Thought to be an old wives' tale, the notion of hypercompensation now appears to have sound (as it were) scientific backing. The part of the brain devoted to visualization is available in blind people for other tasks. If a pregnant woman is said to eat for two, you might be said to listen for or, rather, as two. I think of your most recent book, Eavesdropping: A Memoir of Blindness and Listening, which renders the concrete music of life a sort of secret symphony, one requiring no tickets at all but still waiting for its proper audience. And I think of the line from Planet of the Blind that ties back to the birding analogy with which we began: "I listen like the ornithologist who unwraps bird bones from tissue paper."
S. K. We know from contemporary neurological research that people with disabilities can 're-wire' certain brain functioning provided that the disability happens early in life. So it's possible for someone with deafness or autism or blindness to find compensatory modes of perception and of discernment. Obviously if you're a blind kid and you're alone because everyone else is playing baseball, and you find yourself playing with a Victrola in the attic, well then something is happening early in that life--a form of mentation and affection--what they called "ardor" in the middle ages--so you listen to everything: Caruso singing "Vesti la giubba," and then you listen to the sound of the needle bumping against the paper label and you decide that you like that sound equally as much; then you decide you like the sound of the stray hornets bumping the windows in the attic; the pigeons cooing and fluttering; wind moving the old beams of the house as a late afternoon thunderstorm rolls in. I wanted to share that quality of ardor that grew out of my boyhood lessons in privacy and using my ears--a woman asked me after a reading in Boston, "Why travel anywhere if you can't see?" She was in her early sixties and newly blind, and the only way I could answer that question was to show in a new book how using your ears in both familiar and unfamiliar locales can be an invitation to a kind of imaginative play. And [Eavesdropping] was a hard book to write since a celebration of a life spent listening isn't going to have a discernible plot.
R. S. I'm struck in Planet of the Blind by the moment you get your first guide dog, Corky, and declare: "There is no analogy to getting a guide dog." A few pages later, petting Corky, you tell him, "'Your ears are so soft, they have no analogy.'" In a book chock full of analogies, brilliant analogies--I especially love "My eyes are engines of apparition; the wild cyclamen grows straight across my iris, puts out leaves over my pupil" or "Conversations between men and women can be like warm soap dissolving in a bath"--the analogies suddenly stop, as if dramatizing the point at which you secure a kind of surrogate sight, the literal firmly linked to those who can see. The book seems poised between a celebration of blindness as a "rich way of living" and even a kind of imaginative advantage and the need to get around more easily in the world. The memoir's plot concerns the difficult project of embracing a blind identity, which means, in part, accepting a dog or cane, what you call an "invitation to be nude in public." Can you comment on the tension between conceding the importance of the literal and praising the veil of wild cyclamen?
S. K. I think it was Gore Vidal who said, "Politics is knowing who is paying for your dinner." I always liked that. But then I realized one day that, really, politics is about making the dinner yourself. In terms of my blindness, I had been raised to disavow it by a mother who wanted me to go to public school as opposed to the Perkins School for the Blind, and she saw the world as a Victorian black and white panorama: I could be in public but only insofar as we never really spoke about what it meant to be severely visually impaired. Planet of the Blind represents a complex evolution of subjectivities: even while I was at the guide-dog school and getting Corky, my mother was disappointed that I was getting a guide dog. She felt that declaring my blindness for people on the street was going to be a terrible thing for me and also for her. That's not a very complicated psychoanalytic map to read, really. And I told my mother from a payphone at the guide dog school that my decision to get Corky was entirely my own affair, and my life would henceforth not symbolize her life. In effect I told her to take responsibility for her own psyche. I think that saying Corky's amazing ears had a softness without analogy was my way of alluding to the emancipatory quality of having this newfound creature in my life. She didn't have to represent anything. She was just what she was. So that's why I cut against the grain of analogy in that instance. Sometimes a cigar is just a cigar, and sometimes it isn't. Corky could also symbolize for me a kind of melding of our respective intelligences into a kind of Centaur--a hybrid figure as she does in the poem "Guiding Eyes" which is in Only Bread, Only Light.
R. S. I'm also wondering where you now stand on the issue of curing blindness. You have written famously: "On the planet of the blind, no one needs to be cured. Blindness is another form of music, like solo clarinet in the mind of Bartok." You now teach at the University of Iowa, where part of your appointment involves working as a public humanities scholar for the Carver Eye Clinic. (The other part more traditionally concerns teaching nonfiction writing and disability studies.) This clinic, led by Ed Stone, has been at the forefront of gene therapies that have recently proved tremendously successful, curing specific forms of blindness. If you've changed your mind or rethought how you would present rhetorically the tension discussed above, what impact would recovering your own sight have on your writing? Does pragmatically embracing a cure undermine the assertion of dignity and difference that give rise to the field of Disability Studies?
S. K. Yes, in Planet of the Blind I say that no one needs to be cured and I still mean it. I talk a good deal on my blog (www.planet-of-the-blind.com) about the crucial importance of disability as a human rights matter. No one who is without sight or hearing or who has visible or invisible disabilities should be consigned to second- class citizenship (or worse) because of their physical difference. I'm heartened by the recent United Nations charter on disability rights--which is a worldwide effort to declare disability rights as being at the center of human rights. So again, no one needs to be cured to achieve a life of dignity and purpose--or what Thomas Jefferson rightly called "the pursuit of happiness." Within Disability Studies we are fiercely and properly opposed to the so-called "medical model" of disability that has held (historically) that people with disabilities are merely patients waiting in line for their proper cure. Of course, we know now that the growth of medicine during and following the Industrial Revolution has lead to a dehumanizing of the patient and that there is much work to be done within the culture of medicine to educate physicians and healthcare providers that lives that carry within them an aspect of physical challenge are no less thrilling and valuable than say, the life of John the Baptist. Still, the medical community also has to challenge itself to see people with disabilities as in turn being every bit as important and deserving of good medical care as the temporarily abled patient. You have to remember that the story is legion among people with disabilities that they are told by a doctor, "Go away. There's nothing more we can do for you." That's the 'medical model' at its worst: it consigns a whole human being to a subset of her or his disability--and PWDs [people with disabilities] all too often go out into the world, newly deaf or blind or what have you, and they never get medical care again. I know this to be true, and I'm now involved with a top-flight medical college because in fact I think that physicians need to celebrate the whole patient and liberate disability as metaphor from their thinking. We all know this is important. And progressive physicians understand this as well. You can't cure a person of, say, 'old age,' but you can celebrate that life and help the older patient live well. Just so we want the PWDs of the world to live well and without the burden of Victorian cure as their key to the city. There's another important aspect to this serious need for a 'sea change' in the medical community: we're getting very close to being able to ameliorate or even cure certain forms of blindness. That's a fact and not a fiction as we once might have supposed. Though it's only been a decade since the mapping of the human genome, world-class geneticists and physicians (including my colleague Dr. Edwin Stone at the University of Iowa) have discovered several of the genetic mutations that cause hereditary kinds of blindness. Science and clinical medicine are rapidly converging to the point where, say, macular degeneration or Leber's Congenital Amorosis can be cured by means of genetic implantation. Now in my mind, if you're a sensible person you would want your elderly mother or your aging friends to retain their eyesight. This is a "given" about the exciting opportunity to relieve certain kinds of suffering. Forgive me, this is a long answer. But you see, I don't want any blind person to live according to a symbolic assignation that a vision impairment makes a person second rate; just so, where it's possible to prevent late onset blindness--I have to be honest and say I'm all for that. Some within the disability rights community might take umbrage at my position because they'll confuse my championing possible cures with some kind of Peter Singer absolutism about the value of disabled life, and that would be a terrible mistake. I believe in all life and that takes me back to the UN charter again. It's of some interest to me that the United States was one of the very few nation states that did not sign the UN charter on disability rights. Why? Because our government remains hostile to democratic medicine. If you champion all life, you champion the rights of all people to live with their proper care and accommodations. So I find that being a literary writer who works in part within a medical college is a complex engagement. I don't know how to answer questions about getting my own sight back. I don't mind such questions, but the fact is that my form of blindness isn't likely going to be fixable in my lifetime. Would I take my sight if it were offered? Yes, if it wasn't some kind of Mephisto thing. But on the other hand, I'm a very content human being--a lucky one--and I don't need to see in order to follow the deep roads of the guitar, as Lorca would say.
R. S. You speak in Planet of the Blind of a "lyric anger," citing Robert Bly's book The Light around the Body, which you say (and I agree) "expresses an almost mystical combination of wonder and rage about the Great Society." "He depicts," you go on, "a world gone so awry that the very pine stumps start speaking of Goethe and Jesus, the insects dance, there are murdered kings in the light bulbs outside movies theatres." In a poem called "Graz" from your forthcoming book, you declare, "I spent last night drinking with two madmen. / We sat up late in a summer garden and laughed ... about the mercenary bullshit of capitalism." And in a poem called "Pittsburgh," you relate, "Outside a Sunday silence, old Carnegie having his way--even the wheels must be quiet.," later explaining, "Police place straw in the streets to muffle the sounds of carriages, per Andrew Carnegie's orders." Perhaps you could elaborate on the role of "God said" in your own work--both prose and poetry. Does this mode of expression accomplish something that others cannot? The politics of disability and economic inequality seem to require such a mode.
S. K. These are excellent questions. In our time it's become customary to talk of political poetry as an act of "witnessing" but again, lyric imagination isn't the same as press photography. I love it when the poet James Wright describes in one of his early poems a vision of the dead prostitutes in Wheeling, West Virginia, parading down to the Ohio River at twilight to enter the waters as if they're all part of some grand, Tibetan transmigration of souls. That's lyric anger as you would say, and it's poly-semous--those damaged women enter the terrible waters of the Ohio River, rather than, say, some mythic river in Dante's Paradiso--and that constellation of figures presents a doubling of poverty and neglect--an American tragedy to borrow Dreisser's title. Literary anger is more complicated than graffiti--(though I love graffiti) because it shows us the torn figures that have been misshapen by political circumstances, and that kind of art shows us the darker ironies that come after a public crime. In one of John Balaban's remarkable poems we see that Vietnam's landscape endures with millions of torn eyes and ears that go on seeing and hearing. Lyric anger positions itself against quick forgetting--which is an American vice of course. Disability and poverty are nearly indistinguishable all over the world. So I'm often looking for layerings of imagery that work with a variegated or heaped anger. Here's a recent poem that tries to do what I'm talking about:
Now What, Captain America?
--after the Finnish of Pentti Saarikoski
God said to Satan: "Bow down in remembrance of me." Satan said: "But you are a mathematical proposition Or else you're nothing & either way--just for the sake of argument, Abstractions are graven images." God punished Satan by making him the commandant of Gitmo. Pages turned on calendars of mankind. The wicked prospered beyond their wildest dreams. & Satan climbed in and out of human eyes & his footprints felt like nothing more than sand.
I can't say whether this poem, based on some lines by the late Finnish poet Pentti Saarikoski, actually succeeds as a poem. But I was able to disclose my anger about America's violation of human rights at Guantanamo and the smug and provincial qualities of middle-America's organized religious groups. If there's some blindness in that poem it probably is the sand in the eye image--my own eyes hurt all the time. So I stuck that in.
R. S. So much of your work takes up the theme of travel, one might even say, the absurdity of travel: a lone blind man off by himself in a strange land. Poem after poem in your forthcoming book stages the problem of not knowing where you are. In "Invisible Cities, Redux," you write, "I go out in the early morning rain in Galway, Ireland and tap the cobblestones with my white stick. / Immediately I get lost." In "Light and Shade," you announce, "Where I go is of considerable doubt... / But turning the corner one feels very old in the shadow of the mariner's church? / I ask strangers to tell me where I am." And yet, getting lost seems to be the point. Once again, losing the literal offers extravagant rewards. "Italo Calvino has invisible cities and I recommend them," you say. "What could be better than traveling the universe and finding extraterrestrial versions of Venice?" At the conclusion of "Graz," you remark, "Otto and I talked about the odd business of traveling when a man is blind. / You wake up somewhere, face down in fragrant leaves, and you don't know if you've been captured or perhaps you have, against all odds, arrived in heaven..." The world seems at once more and less immediate when one is blind. Though treating disability as a metaphor is considered one of the biggest no-nos in Disability Studies, are you intimating that the sighted fail to see how strange the world actually is and, further, how lost existentially, ontologically, and epistemologically we all are? Without a map, as you might say. Is there something of Heidegger here or Kierkegaard?
S. K. I think that blindness functions most often as an ableist metaphor for lack of affect or an inability to understand the world. That's the most egregious and damaging cultural formation about blindness, and it continues to haunt blind and visually impaired people everywhere. Because I believe that lyric poetry is decidedly not about the provable, it lends itself to the literal fact that I am often lost or richly, unavoidably confused while traveling--whether I'm in my own neighborhood or I'm in a far-off city or country. I like being in situations of uncertainty--and although I don't particularly like the panic of feeling lost or you know, feeling vulnerable, I do take a good deal from situations in which I'm forced to pay attention to the unfamiliar. I don't believe this kind of topos is different for a blind poet than it is for a sighted one. Poems are invariably about the resolution of contradictory strains of information--memory, things 'seen' and 'unseen' and the odd ways that the 'Tao' of living will surprise us out of all our habits of thinking and feeling. So I don't think I'm doing much that's different from other lyric poets who can see. Perhaps the surprise if there is one is that I'm able to denounce the culturally prevalent cliche that blindness is "absence" by filling that misapprehension with the curios of poetry: stones from Ravenna, a pair of opera glasses in Beethoven's house, a boy remembered from my childhood who had leukemia, a burned clock that my mother kept after her father's house burned to the ground and which I used to play like a musical instrument up in the attic. These things come together while you're lost on a street if you're paying attention. You can find that same kind of aleotoric and odd collage-making in the poems of Frank O'Hara or Adrienne Rich--to name just two of the poets I love--and so in essence I'm just doing what the poets tend to do. We string things together and make word sculptures. If by doing that I can challenge the ableist notion that the blind are without poetic diction than I've managed to add to the mix.
R. S. In American poetry, specifically, blindness shows up, again and again, as a metaphor for abjection. Why do so many contemporary poets continue to use disability in this way? What's so compelling about turning the disability figure into a pejorative symbol? Finally, how do you envision us moving beyond this tired impasse? In Waist-High in the World, Nancy Mairs asserts, "I embody my metaphors." There's nothing figuratively lame about her insights--as opposed to those that trope off of physiological difference while utterly neglecting the prejudice and discrimination that plague PWDs. I guess I'm asking how to preserve the analogical impulse, both aesthetic and moral, that lies at the very heart of poetry while remaining attentive to difference? Can sighted poets ever borrow from blindness?
S. K. I like this line by Baudelaire: "Life is a hospital where every patient is obsessed by the desire of changing beds." What can we learn from poetry about the body and the culture of bodies? Is what we see in a poem merely a figurative illustration of extrinsic historical or political truths, or can a poem create a new and unforeseen nexus of identity and consciousness? As scholars concerned with the social construction of disability identity, we know instinctively that the answer to the question is determined by our own rhetorical stance toward figuration. A poet is Aristotelian if she's aiming to look beyond history for the subject of her poem. A poet is essentially Platonic if she is working in the service of verisimilitude. These categories aside, we know that Ezra Pound was echoing Aristotle when he said that the poet is "the antennae of the race." The Aristotelian imagination probes in the unknown space ahead and reports back to the great segmented worm of culture. The poet Richard Wilbur writes: "The mind is like some bat / Beating about in caverns all alone / Trying by a kind of senseless wit / Not to conclude against a wall of stone." Poetry is instinctive, far-seeing in its peculiar interiority, re-constructing the world that surrounds it. This vision of poetry holds that figurative language is exploratory, (neo) constructionist, progressive, lyrically alive. Again Baudelaire: "It always seems to me that I should be happy anywhere but where I am, and this question of moving is one that I am eternally discussing with my soul." One can say that lyric poetry in general is concerned with moving as an operation that defies analysis. The soul is always the totem of irresolvable and competing desires.
In poetry the soul is a synonym for the reliquary; it is a place. We position the furniture of our suffering in the soul's room. But the lyric insists there is life outside the hospital--life beyond the ward. Notice that lyric poetry concerns itself with containment. One can add adjectives that work well with suppression: abject containment, unaware containment, irrational containment. Disability Studies scholars will recognize this impressionistic terrain as inherently akin to the historic figurative language of disability--the lyric concerns itself with the conditions of individual abjection and is always therefore a fit medium for exploring disability awareness. Sighted poets can learn from blindness only insofar as they can interrogate the cliches of Victorian blindness and substitute the intelligences of lyric imagination.
R. S. With your new book of poems coming out in 2010 from Copper Canyon, I'm wondering if you have a sense of how your poetry has changed in the last ten or so years. What differences do you see between Only Bread, Only Light and Mornings with Borges? There's a poem in the new book called "Borges: They Are Knocking the Wind Out of Me in Iowa City" that recounts an exchange in Helsinki with a man on stilts who is advertising a circus. When the man realizes you are blind, he withdraws his flier, provoking your muffled rage: "I resisted the impulse to shout after him in my high school French: / 'You sound like the first dull minute after a train wreck!'" The new poems seem at once more strange, more surreal--there's something uncanny about the man's literally precarious certitude with respect to your blindness--and more righteous. One can almost feel you trip the presumptuous prig belatedly with your words. Am I correct in saying that the new poems seem fiercer than the earlier ones, without losing any of their customary tenderness and vulnerability? It's as if you want to rework the past, spare yourself the complete humiliation of having not responded to the world's cavalier insults.
S. K. A friend asked me to write a book review for his new journal, and I gave him a poem instead. My work has grown increasingly focused on the simultaneity of intellectual delight and sorrow. The poem suggests this philosophical problem by asserting that the book I'm reviewing will: "leave you cold though you're laughing, / Though you're sweating through this life, / Green with notions, starved with God, / Inconsolable with every page ..." If I can correctly assess my intentionality, I'm fiercely resisting the notion that simple and customary attitudes toward life or art or the body--any of these--will save you from further ironies.
R. S. One obvious difference I see is the inclusion in the new book of what you call "lyric essays." Can you speak about this form and how it might serve the subject of blindness? I'm interested, too, in your sense of the many genres you work in: memoir, lyric, lyric essay, nonfiction essay, short story, even the novel. At an event last year, I heard you read from your novel-in-progress about that most unlikely of opera stars: Enrico Caruso. The working subtitle, if I remember correctly, is "A Novel of Breathing," and there are great many passages devoted to the lyrical evocation of Caruso's spectacular diaphragm. You commented earlier on the difficulty you had in writing Eavesdropping because the subject of listening didn't have any immediately discernible plot. Are you happiest as a writer when you're subverting the characteristic expectations of genre?
S. K. The answer to the last question is yes. I work against forms as a way to work with the constraints that disability can cause. Claiming disability (Simi Linton's term) is for me to claim the lyric. In turn the lyric is the mode of poetry and prose that best resists the falsifications of narrative imprinting. If people with disabilities have been exiled by history, by the architectures of cities and the policies of the state, then the lyric and an ironic form of awareness are central to locating a more vital language. We claim disability by lyric impulse. And by lyric impulse we rearrange the terms of awareness. The lyric mode is concerned with momentum rather than certainty. This is the gnomon of lyric consciousness: darkness can be navigated. The claiming of disability is the successful transition from static language into the language of momentum. But of particular importance in this instance is the brevity of the lyric impulse. The urgency of short forms reflects the self-awareness of blocked paths and closed systems of language. The lyric reinvents the psychic occasion of that human urgency much as a formal design in prosody will force a poet to achieve new effects in verse. Igor Stravinsky put it this way: "The more constraints one imposes, the more one frees one's self." And the arbitrariness of the constraint serves only to obtain precision of execution. We are in a hurry. We must tell the truth about the catastrophe that is human consciousness. And like Emily Dickinson who feared the loss of her eyesight, we will tell the truth but "tell it slant"--the lyric writer may not have a sufficiency of time.
R. S. I've heard you use the phrase "disability as epistemology" in another context. Can you elaborate on it? My son, who has autism and who is a writer, most definitely perceives the world in a way different from me. And what he concludes is different as well. Are you talking about embodied, or even embrained, knowing that is directly a function of physiological difference--in your case, blindness?
S. K. I love the term 'embrained' because it reminds us that thought is organic. If you're a person like Lowell Handler and you have Tourette's you will (as he puts it) demonstrate "Tourettic speed" in whole moments of your thinking. And this is true for people who have autism or ADHD. The importance of education and nurture is of course a matter of huge importance in every person's life. I am a poet not because of my blindness but rather because I received a strong literary education and I was able by turns to put the tools of language to good use. Your son, D. J., is not a poet because he is autistic but rather because he has discovered how intriguing language can be and by turns how much it can convey about his remarkable intellectual speed. One of the most crucial things that the general population can learn from people who have disabilities is the absolute importance of providing every citizen with an individualized educational program. We are far from this of course, but the more we learn about what I've heard you call "the politics of neurological difference," well, the more I think we will learn about the myriad ways human beings can acquire information.
R. S. Since we know more about disability in its historical context, we've found out that many prominent figures have not only had a disability but have been keenly influenced by it--Abraham Lincoln, for example, or Walt Whitman. Is there a particular story concerning literary disability that's come to interest you? What about Emily Dickinson? Wasn't her vision impairment much more significant than we previously thought?
S. K. Emily Dickinson began to experience vision loss when she was in her thirties, and although we have no surviving medical notes about the matter we do know that she visited one of New England's leading ophthalmologists who examined her eyes with the newly invented ophthalmoscope. The doctor is said to have reassured her that she wasn't going blind. In turn, Emily Dickinson told her circle that she was not going blind. The odd thing is that after her visit to the eye doctor, she began to experience absolute photo-sensitivity--in effect she was blinded by daylight. Dickinson spent the remainder of her life living behind closed shutters, and she wouldn't even enter the main parlor of her family's house to greet visitors, preferring to speak with them from behind a half opened door. The available evidence suggests that she had a form of blindness that affects the rods and cones that process light--a form of blindness that her nineteenth-century eye doctor would not have seen by looking at her retinas with the opthalmoscope. I think that her poetry is thereafter concerned with interiority and with the evanescence of seeing--and that she works these things into lyrical studies of personal feeling and intuition. My general feeling is that Emily Dickinson was quite substantially visually impaired after 1862.
R. S. Can you tell us about your unusual appointment at the University of Iowa? I have this vision of you doing rounds with Dr. Stone, reading poems to patients, offering up a Disability Studies perspective to haggard residents. In this age of interdisciplinarity and the public intellectual, you certainly seem to have an ideal perch. Lastly, are there any future projects I haven't referenced that you'd like to mention?
S. K. I teach Creative Writing at the University of Iowa where I also have a faculty appointment in the College of Medicine. The physicians like to point out that as far as they know, they are the only medical college on the planet to have a blind poet serving on the faculty. I am working alongside some of the world's foremost genetic researchers and physicians. As I said above, Dr. Edwin Stone is a leading figure in the global effort to discover the genes that cause genetically transmitted forms of blindness. He and I share the view that medicine must transcend the 'medical model' of disability and celebrate the whole patient whether she or he is curable or not. To that end we are working to develop programs and services in our eye clinics that will help the elderly or the poor. In the United States, services for the elderly are often lacking. So we want to see the whole patient and not a medicalized tabula rasa upon which we would inscribe the medical model. At the same time, it's a remarkable moment in medical history: genes that were discovered here at the U. of Iowa have been modified and implanted into blind patients who in turn have had some restoration of their vision. I am mindful of all the traps having to do with genetic research and disability history, and yet I am heartened that serious progress is at hand where certain types of blindness are concerned. The most important thing is to educate younger physicians about the medical and social models of disability and to get them to interrogate their own acculturated presumptions about the bodies of their patients. I'm always going to rounds with these ideas in mind. Last year I brought my friend the poet and memoirist Kenny Fries to grand rounds, and together we spoke about the history of abjection and our respective experiences as children who were often hospitalized because of our disabilities. And then we got onto the subject of Darwin, and things got very interesting. Imagine a room filled with top-notch geneticists and physicians talking about the ways that technological accommodations for PWDs are in fact a perfect codeterminate of evolutionary theory. And man, then you're having a good conversation!
Ralph James Savarese
Department of English, Grinnell College