Author: stevekuusisto

I have the happenstance blues. They’re both accidental (aleatoric) and whatever is the opposite of accident, which, depending on your point of view might have something to do with the means of production, racial determinism from same, or all the other annotated bigotries of the culture club.  As a disabled writer I know a good deal about the culture club. Now back to my happenstance blues…

I’m right here. I’m terribly inconvenient. Blind man at conference. Blind man in the lingerie shop. All built environments are structured and designed strategically to keep my kind out. My kind includes those people who direct their wheelchairs with breathing tubes, amble with crutches, speak with signs, type to speak, roll oxygen tanks, ask for large print menus or descriptive assistance. I’m here standing against the built geographical concentrations of capital development. I’m here. I’m the penny no one wants anymore. My placement is insufficiently circulatory in the public spaces of capital. Which came first, the blues or the architectural determinism that keeps me always an inconvenience?

Capital creates landscapes and determines how the gates will function. Of course there was a time before capital accumulation. It’s no coincidence the disabled were useful before capitalism. The blind were vessels of memory. The blind recited books. Disability is a strategic decision. Every disabled person either knows this or comes a cropper against the gates when they least expect it.

What interests me is how my happenstance-disability-blues are exacerbated by neoliberal capital accumulation. For accumulation one must thing of withholding money from the public good or dispossession, which is of course how neoliberal capital works.  Here is geographer David Harvey in an interview, talking about just this:

Accumulation by dispossession is about dispossessing somebody of their assets or their rights. Traditionally there have been rights which have common property, and one of the ways in which you take these away is by privatizing them. We’ve seen moves in recent years to privatize water. Traditionally, everybody had had access to water, and [when] it gets privatized, you have to pay for it. We’ve seen the privatization of a lot of education by the defunding of the public sector, and so more and more people have to turn to the private sector. We’ve seen the same thing in health care.

What we’re talking about here is the taking away of universal rights, and the privatization of them, so it [becomes] your particular responsibility, rather than the responsibility of the state. One of the proposals which we now have is the privatization of Social Security. Social Security may not be that generous, but it’s universal and everybody has part of it. What we are now saying is, “That shouldn’t be; it should be privatized,” which, of course, means that people will then have to invest in their own pension funds, which means more money goes to Wall Street. So this is what I call privatization by dispossession in our particular circumstance.

At the neoliberal university and all its concomitant conferences, workshops, and “terms abroad” (just to name some features of higher ed where my own disability has been problematized) the provision of what we call “reasonable accommodations” under the Americans with Disabilities Act is often considered to be in opposition to accumulation. For instance: I was asked to teach a term abroad in Istanbul. When I pointed out that Istanbul isn’t a guide dog friendly city and that I’d have trouble with the traffic and requested a sighted guide accompany me there, I was told this was too expensive. Think about it! One additional human being to keep me from getting run over was too expensive! The “term abroad” was actually designed to accumulate capital, right down to the lint in each student’s and instructor’s pockets. I decided to avoid getting run over and didn’t go.

Privatized culture means everything, including your safety is your own responsibility. I’m in mind of this. I’m not fooled.

When Trayvon Martin was murdered I wrote about gated communities and the intersection between a black teen’s death and disability exclusion. I opened my piece this way:

I know something about being “marked” as disability is always a performance. I am on the street in a conditional way: allowed or not allowed, accepted or not accepted according to the prejudices and educational attainments of others. And because I’ve been disabled since childhood I’ve lived with this dance of provisional life ever since I was small. In effect, if you have a disability, every neighborhood is a gated community.  

I also wrote:

…as a person who travels everywhere accompanied by a guide dog I know something about the architectures and the cultural languages of “the gate” –doormen, security officers, functionaries of all kinds have sized me up in the new “quasi public” spaces that constitute our contemporary town square. I too have been observed, followed, pointed at, and ultimately told I don’t belong by people who are ill informed and marginally empowered. Like Trayvon I am seldom in the right place. Where precisely would that place be? Would it be back in the institution for the blind, circa 1900? Would it be staying at home always?

I concluded:

There’s a war against black men and boys in this country. There’s also a backlash against women and people with disabilities and the elderly. The forces in all these outrages are the same. The aim is to make all of the United States into a gated community. On the one side are the prisons and warehousing institutions; on the other side, the sanitized neighborhood resorts. I hear the voice: “Sorry, Sir, you can’t come in here.” In my case it’s always a security guard who doesn’t know a guide dog from an elephant. In Trayvon’s case it was a souped up self important member of a neighborhood watch who had no idea what a neighborhood really means. I think all people with disabilites know a great deal about this. I grieve for Trayvon’s family. I haven’t been able to stop thinking about him and will never forget.

I have the happenstance blues and they’re a function of design. Differences, and the welcoming of differences require architectures and expenditures of inclusion. It costs money to include the outsiders. You might have to train security guards, authentic ones to protect Trayvon and Stephen. Imagine if they were able to live in peace, share their stories, and spend their money in your neighborhood. (One can’t forget Trayvon was found dead with skittles and a can of soda, the smallest reckonings of teenage happiness…)

Just as accumulation by dispossession involves the creation of cheap labor territories, local dispossession requires the devaluation of the individual. As a disabled man I am Trayvon and he is me.

I walk in my local neighborhood where my neighbors know I’m blind. They like me. They know all about my dog. In a perfectly decent way they think I’m kind of cool. Not in a pitying way, or a telethon way—“he’s so inspiring”—but because I’m another person they know who’s taking on the world.

This is what connects us. It’s solid. Meaningful. I like to call it “the good glue of existence”– a phrase from the Finnish-American poet Anselm Hollo. Glue. Neighborliness. Shared ambition. Curiosity about others. Appreciation.

When I contend with academic conferences that don’t like disability, or don’t admit they’ve a problem with it, I’m mindful that these are the missing ingredients: Neighborliness. Shared ambition. Curiosity about others. Appreciation.

I’d rather walk my own neighborhood than attend your average university conference.

Why the diff?

Because neighbors see in one another the local, the real, the collective.

Academic conferences, all of them, see the future perfect.

No one lives in the FP.

Two large deer in the snowy yard this morning. Two big worries on my shoulders. Two birds calling. Two hearts in my chest—one for the living, the other…And two by two the animals. Two names for a man or woman. Two ownerships of the soul. Two containments of virtue. Two windows streaked with rain. I remember when I was very small I had two toys, a cloth monkey and a wooden top. That top whistled and I made the monkey dance. I had two joys. Always the foolish wish for self-reliance.

All day the sounds of wings. I must have been half mad. I could hear the vestigial wings of crickets and wings that mourn their beauty and wings so small they’d been forgotten by God.

I could not tell the cashier about this while cashing my check; couldn’t say a word about my loving private sphere. Outside I gently touched a leaning bicycle. Like I was the Pope or something; I gave a stranger’s bicycle a blessing. I heard wings and wings and moved inside my clothes almost like a musician. Walked all the way up a hill just to feel grass against my legs.

Called forward by a finch whose eyes were stars. I had some folding money in my pocket. Everything that is most beautiful drifted through me. I enforced my skin to admit of fast moving clouds. I was almost…

1.

Proleptic. In rhetoric “the anticipation of possible objections in order to answer them in advance.”

Example:

The Swedish poet Kristina Lugn writes about the static nature of normalcy with a nod to a subject’s complicity, an irony known to all the disabled I’ve ever known. I’ve always admired these lines:

There are lots of women my age

who’ve even less reason to like themselves

but force others to do it anyway 

even though they’re neither beautiful 

nor in any way productive. 

Gallop Gallop. 

Perhaps its not that ridiculous after all 

to use vegetable dyes. 

Exercise is also good, especially for the brain. 

And to express your feelings in ceramics. 

Because then you get at the same time a bunch of stuff

that gives the home character.

Something to be proud of.

Gallop Gallop.

Prolepsis is a finely countenanced, socially agreeable internalized mode of oppression. All advertising depends on it and most selling in small “c” capitalism is driven by the subject’s anticipation of possible objections to her features. In disability studies we describe our liberation from this neoliberal garden as “crip ecology” recognizing the biopolitics of commodified abjection and acknowledging the role of theory as the means to freedom.

Proleptic. Definition Two. “The use of a descriptive word in anticipation of its becoming applicable.”

Example:

Something to be proud of.

Gallop Gallop. 

2.

Traveling blind is a performance both within normative subventions of assistance and outside cultural denotations of helplessness. All blind travel, taken as showing, is proleptic, both anticipating and answering implicit objections to the concept of blind independence in the very process of navigation. Accordingly the polysemous tropes of blind travel always pertain to the incitement and enactment of art while walking.

Gallop. Gallop

I believe one may say this for all disability movement—wheel chair dancing, simply using a wheel chair. Entering public with a motorized scooter. Signing with others at a corner table in Starbucks.

“I do not need your help,” cries the blind man.

“I do not need to be rescued,” cries the wheel chair user who has dropped his briefcase.

One half of the proleptic performance is anticipation. Planning what you will say. Gallop Gallop.

The other 50% is movement itself.

Let’s be clear, movement starts inside of me and you. All the way down inside.

Proleptic. The use of a descriptive movement in advance of its becoming.

All disability motion, every single one, becomes, every day, a new word.

Disability motion is a form of revery. Radical prolepsis. At least half the time.

Shortly after I got my first guide dog, a yellow labrador named Corky, I took a long walk alone with her in New York City.

Before Corky came to me I didn’t have words for revery, moments when softness of thought and wish are everlasting. She pushed her face into mine and “abiding” came to mind. These moments would never stop being. I could always have them.

I do not think Corky healed me. I do believe we became each other. This is the truth behind  service dogs.

Life with a guide offers men and women spiritual sobriety; you’re invited to know yourself better to become someone you’d like; in no small measure because your dog has decided to live with you, work with you, trust you, and be vital with you.

We became more than our respective bodies. I say that’s not healing. Not precisely. Revery was the proper word. We became dreamy together. I dreamt of satisfactions and though I didn’t know her dreams I knew she was pleased with me, and happy to be along for the journey.

She didn’t think she was fixing me. She was a confident dog. She enjoyed her confident man.

Reveries are the product of emotional confidence. In middle French “rever” meant to speak wildly. So there it was. Corky made me a better dreamer, a wild thing to say.

What does this mean a better dreamer? After Corky died I thought hard about it. If revery is a waking dream—a softened reality—then this was the first thing she brought me. She brought it the same way she brought me my shoes each morning. Shoes first, then the glorious day, always half in dog rhythm.

Brian Hare, a canine researcher at Duke University says dogs hijacked the human bonding system. In effect dogs understand us, empathize with us, intuitively read our intentions, and are the closest animals to us in emotional terms. From this comes what I call dog rhythm, a shared revery, a mutual hormonal effect. When living by dog rhythm time is invariably faster or slower than customary human minutes.

It must have been only a month after Corky and I were paired. I was talking to myself rather often “post-dog”—which I imagined meant that happiness was having its way with me.

“Maybe I’m developing a talent for contentment,” I thought. “How often do we have the chance to admit this in our lives?” I thought.

“As often as you like,” I said.

“Be joyful as often as possible,” I said.

Corky and I rode the subway to Coney Island.  It was April and off season, but the famed Boardwalk was a grand place for a brisk walk. It was a blustery weekday in early spring and there were very few people about. We pounded down the wood planks fronting the ocean and I said things about well being softly, the way self-talkers tend to do. Corky had her head up, very high, to scent the Atlantic, and it was safe to imagine she was also thinking about delight.

Aristotle described happiness as “human flourishing” which he said involved activity and exhibiting virtue, and both should be in accord with reason. “Corky,” I said, remembering a day from childhood, “no one can be happy while walking the railing of a bridge…” “There was no reason in my youth,” I said. “And now you’re here and you are my virtue,” I said. I wasn’t sure what this meant. “A dog can’t be my full virtue,” I said. “She can only be the agent of my honor,” I said. “But it’s lovely, Corky, to be walking the boardwalk with you and the ghost of Aristotle,” I said.

A policeman approached and said, “Are you OK?” “He’s seen my lips moving,” I thought. “He probably thinks I’m lost,” I thought.

Could I tell him that happiness was having it’s way with me? Tell him about Aristotle’s sense of “Eudaimonia”—good spirit; a burgeoning; a man and his dog growing wings? Could I say that after years I was seeing my life and the surroundings in which I found myself, finally, as objectively desirable? Would anyone on the street, much less a cop, know what I was feeling? I tried to imagine “joy-with-strangers-day” in New York. Something like the Reggae “Sun Splash” in Jamaica.

“I’m just happy,” I said to the policeman who was taken aback. “That’s a first for me,” he said. “I mean, no one ever says that, even at Coney Island!”

Had I been a self-talker throughout my life? I didn’t think so. In childhood development it’s called “private speech”—kids repeat the words they’re hearing, perhaps as a way to absorb them. “Maybe,” I thought, “I’m having the childhood I should have had.”

Prolepsis.

From Scott Lissner, ADA Coordinator at The Ohio State University:

* Princeton University’s disability services director allegedly told doctoral student Rachel Barr that disabilities like her dyslexia and ADHD are “not part of the zeitgeist at Princeton,” and now Barr is asking Princeton to respond to her accusations of disability discrimination, which she blames for the termination of her student status in 2014: http://yaledailynews.com/blog/2016/03/28/yale-alum-alleges-disability-discrimination-at-princeton/

* Inclusive higher education initiatives for students with intellectual disabilities continue to grow, with  new programs at Minnesota state colleges and universities (http://www.mndaily.com/news/metro-state/2016/03/31/proposed-bill-would-create-mnscu-pilot-program-disabled-students) and the University of Central Florida (http://www.centralfloridafuture.com/story/news/2016/03/31/ucf-welcomes-students-intellectual-disabilities/82421126/)

* Following a string of complaints about San Diego County campuses and their sexual harassment proceedings, now another complaint is coming from Cal State San Marcos student Jason Lo, who says a suspension and sexual harassment proceedings for his “leering and staring” are not taking his autism and Tourette’s syndrome into account: http://www.sandiegoreader.com/news/2016/mar/29/ticker-disabled-mans-leering-leads-suspension/#

* Acceptance letters are going out, and once again this year students with intellectual disabilities are being filmed getting their letters – here’s one featuring Rachel Grace getting her letter from East Stroudsburg University (no captions or audio descriptions): https://www.facebook.com/FoxNews/videos/10154193875296336/

* The University of New South Wales in Australia is offering new free Massive Open Online Courses (MOOCs) on disability from a disability studies perspective, designed for people in the community working with those who have disabilities: http://www.australianageingagenda.com.au/2016/03/31/new-moocs-on-disability-launched/

* The Harvard Business Review has published research showing that working women and minorities can be punished for promoting diversity in their organizations: https://hbr.org/2016/03/women-and-minorities-are-penalized-for-promoting-diversity

* Poverty and disability are still linked and adults with disabilities are twice as likely to live in poverty as those without a disability: http://www.huffingtonpost.com/michael-morris/poverty-and-disability-in_b_9557142.html

* University HR offices and managers can get a little help from “TalentWorks” at the U.S. Department of Labor – it offers tip sheets with recommendations for accessible recruiting and hiring systems: http://www.dol.gov/newsroom/releases/odep/odep20160323#main-content

I fell asleep last night listening to a book about Jesus. Fell so deeply asleep I woke to find I’d reached the end. During my REM state Christ stopped the wind at Galilee and as my waking commenced he vanished. I slept through all the footnotes like any church going Episcopalian. When I woke I was outside the church rubbing my eyes.

Reading blind involves assistive technologies. I use Voice Over on the iPad. All night a machine read to me about the King of Kings who rode into Jerusalem on a donkey. I remember thinking “I’d like a donkey,” as I drifted off to sleep.

In the time of Christ the donkey was the poor man’s horse. When I was a freshman in college lots of students drove the Ford “Pinto”—which became notorious because it had a problem with  exploding gas tanks. I told a Pinto driving friend that his car was the donkey of Detroit. “Jesus,” I said, “would drive a Pinto.”

Why did I go to bed reading a book about Jesus? As a teenager I fell quite ill. Back in the early 1970’s hardly anyone understood that boys could become anorexic. I stopped eating and ground my way down to 98 pounds. My mother was a violent drunk. My father was deeply out of touch with all things “family” and so things were quite awful at home. By day I’d go to high school where I was roundly bullied for being disabled.

When I hit 98 pounds my parents, on the advice of our family doctor (who was concerned but helpless) sent me to a psychiatric facility in the upstate New York City of Rochester where again, no one could unravel my problem. I remember a psychiatrist who actually had a little grey beard asking me if the rawhide lanyard I was wearing around my neck was a fetish. I decided he was in idiot. It was how I wore my house key—a matter any child of alcoholics would understand. My week in the institute did nothing for me save that it showed me how badly we can treat people who are in advanced states of suffering. My room mate was an old Ukrainian man who was covered head to toe with scars. He wept openly in bed. Occasionally he would ask me to look at him. I would shuffle over and he’d raise his hospital gown and point to his map of scars—most, if not all of them self-inflicted. He spoke no English. He would point and weep.

On my side of the room things were more scientific. A tall medical student put a piece of meat on a string down my throat. They were testing my digestive enzymes. Was I mad or was I a gastro-intestinal freak? As with most emotional dilemmas the good doctors could never find an answer.

Home again and shivering all the time, sleeping with the electric blanket on its highest setting, I decided one Sunday morning to go to church.

No one in our family went to church.

I got up early and walked approximately three hundred yards to the small Episcopal chapel at the tiny liberal arts college where my father worked.

I went in. I’d never been there before.

There were perhaps twenty professors sitting in the pews. I knew them vaguely from faculty events at our home. They were twisted adults, weird as Rococo picture frames, slightly troubling, since they knew who I was. By appearing alone in the chapel would I be remarked upon?

I sat. I closed my eyes. I was dizzy. Hunger does that of course, but being in public, in a church, sitting in a sunbeam, that will also make you spin. I was killing myself. I knew it, somehow, in that clotted way teenagers know things from the inner life. I both did and did not want to live.

My blindness was a problem wherever I went. School, home, public events, the sidewalk, you name it. Problem. Problem. I was the problem.

I knew I was the reason my mother drank and took pills. Surely my ruined eyes were the source of her despair. Surely if I was a better child, less defective, or more successful at covering up my deficiencies, why then all would be better.

Think about my frail shoulders carrying all that weight. I looked like a skeleton. My hips stuck out along with all my ribs.

I was sleep walking through the pain and suffering of others and simultaneously depriving myself of nutrition—both physical and spiritual. I was 17 years old and already an old man.

I don’t remember much about the service except that an Episcopal bishop from Rochester spoke. He was kindly and seemed to have the same warmth as the sunlight I’d found in my seat and which my troubled body was absorbing rather desperately.

What came next was a bell. We’d entered the celebration known as the eucharist about which I knew nothing. Picture me shivering in a church pew. Understand that I was close to internal organ failure. Kurt Vonnegut Jr. once said he was committing suicide by cigarette. I was doing it by pure denial. You must imagine not eating for months. Imagine the strictness of the enterprise. The countless glasses of water. The refusals in every setting.

The short version is this: I went up to the altar rail, got down on my knees, reached up and took the bread. “Take and eat, for this is my body.” It was the sacrament of Christ’s body and blood. My very fingers were anemic as I took the bread, and my hands shook. “Come, risen Lord and deign to be our guest…” “My God, thy table now is spread…” “I am the bread of life…”

Do this in remembrance of me…How can I explain…hope and memory fill the whole man, the entire woman. Bread and wine, surely they are metaphorical, certainly, until you are a starving blind adolescent, chilled in April light, one inner foot from death; who’d been living in frozen time; who felt a heat inside, who felt his own blood and flesh kissed from somewhere deep down and still. Do this in remembrance of me. Eat, consecrate your mortal flesh.

Far down this moment lies still. From that day forward.

Which is how I came to fall asleep to a book about the taking, blessing, breaking, sharing.

For this I have no dismissal.

To understand your weakness is no easy matter. Take. My body.

I have tried to be a good man, though I fail, much as anyone must. The clouds come close, deer nest under the apple trees. I walk in the spring light fancying vengeance as the world is evil and banal and I want so much to consign all the meretricious bureaucrats to Hell. I ask Jesus to forgive me my lambent distress. I want to be good. I wish the love my animals show toward me shall be merited. I want to be the kind of poet who builds houses for people.

I agree with Jurgen Habermas: “each murder is one too many.” I wander around grieving. There is so much death and its industries are fed by good and bad citizens alike. This is why terrorists hate the nation states. Try and locate the moral centers of the United States or France. Refugees stream across uncivil borders desperate for food and medicine and they’re met with realpolitik. Neither Vladimir Putin or Barack Obama wants to save the children of this thirty years war. As I write, the half starved winter’s deer are nosing among the daffodils in my yard. I see them as children.

How to be good? “Hell isn’t other people. Hell is yourself” (Ludwig Wittgenstein) I think, “even Jesus went to Hell, and he came back, stronger.” We’re here to be good and to endeavor for strength. Such proud words. I fail, much as anyone must. Old Ludwig Wittgenstein, who often sounded like my Finnish grandmother: “we’re not put here to have a good time.”

I’m the electrolysis of good—how I’m wired. God grant me more volts.

Mystic

They call it mystic when the body retires, clambers in air

With twisted spine or cataracts, as if God was nothing

But a lazy finger reading Braille without discernment.

On clear days condensation at the window

Is the best place to write, one thinks of childhood

With its hundredth of a second, posed and waiting

When there was no promise at all—not of the body

You’d become, nor of butterflies or angels,

Just the delicacy, writing across a living sunbeam.