Love to All the Cripples and the Ships at Sea…

I am a writer who speaks about the importance of disability as a dynamic of power which means I believe cripples are at the center of life itself. Perhaps another way to say this is that life is imperfection regardless of whatever Richard Dawkins might say. (Dawkins understands DNA as a purity symbol rather than a concatenation of genetic mistakes.) (One may think of Dawkins and all social Darwinists this way.) (It is altogether splendid to see Jeremy Bentham taxidermed with his head down by his feet.)

Disability is life itself. Not an idea about life; not a held breath and a prayer; not a shrug or shudder. As the poet Marvin Bell once put it, life will blow you apart. I’m often in the position of urging the temporarily normal to admit that life is nefarious, thrilling, dark, urgent, and never without dynamism. All the sad metaphors employed against disability are failures of the intellect.

The random errors which produce "junk" DNA–the mutations in our genes, are in fact, wait for it, "random." Richard Dawkins is weak in this area as he prefers the ghost in the machine that’s always looking to improve itself, an idea which no respectable paleo-geneticist believes.

Disability is neither good or evil. It’s a natural fact. And it makes for beauty just as anything will if it’s understood properly.

So forgive me for starting with a grayness but as I recently joked with a paralyzed friend, “I feel like a battered old fish with many dents in his flesh”—the context—that it’s not probable I’ll see the advances I’d hoped for us when the Americans with Disabilities Act was enacted over a quarter century ago. I’m old enough to be feeling what academics call accidie, a weariness, and if I’m not defeated I’m suspicious. Shorthand: we haven’t gotten far enough, and daily the news is incontestable. The “fish conceit” is what can happen to believers and how not to become the fish is the story (mine and yours) since disability bias surrounds us. (Bias is a story with many chapters like Bocaccio and knowing it never renders comfort, though if you’re a bigot you may enjoy schadenfreude. I once had an “iffy” friend who practiced “vengeance fantasy”—as he said, doing it nearly as much as he masturbated, seeing his enemies staked out in the Colosseum with lions chewing at their entrails, etc. He’d rub his hands and imitate Charles Laughton: “how do you like your God now, Christian?”)

Bias is a variorum edition. My spotty pal really meant what he said—if he’d had his way he’d have fried you in oil. Everyone has his own grayness. Discrimination, personified, wants us to join the Centurions, at least inside, and its first sign is indifference. In my experience street theater is one way to resist it. Thirty years ago when I was a Fulbright Scholar in Helsinki, Finland I went one night to a gritty, working class bar where I was accosted by a wildly drunken laborer. Everyone was painfully drunk–that manly near death atavistic Viking berserk hallucination of everything, and I thought: “all these years, so many wounds, so few praises.” That was when a man I did not know turned to me and said: "You are a Jew!" "You’re right," I said, since I was young and in love with poetry, "I am a Jew!" It was the first time I’d ever felt the pins of anti-Semitism, I, a Lutheran with a long beard. He reached for me then but missed and grabbed another man. "You are a Jew!" he shouted. "No, it is I," I said, "I am the Jew!" But it was too late. They were on the floor and cursing, two men who had forgotten the oldest notion of them all: in Jewish history there are no coincidences.

As Kurt Vonnegut would say, “bias is a clunker” and though it must be taken seriously, if you’re one of its chapter headings having a shield of irony becomes essential. You’re a cripple. You don’t belong in here. Don’t belong on this website, on this campus, don’t belong in a customary place of business. For years I used to carry custom made stickers depicting the universal disability access symbol inside a red circle with a line through it. I’d paste them on the doors of inaccessible restaurants and academic buildings and the like. I really need to get more of them but I can’t remember where I they came from, and as I say, I’m in danger of weariness. Dear young Cripples, I’ve been fighting a long time. Thank God for ADAPT. And don’t stop fighting. But don’t stop laughing either. As the great disability writer and activist Neil Marcus says: “Disability is not a ‘brave struggle’ or ‘courage in the face of adversity’…Disability is an art. it’s an ingenious way to live.”

Once while I was teaching at The Ohio State University I was invited to a meeting with a dozen faculty and former astronaut and Senator John Glenn. We discussed the future of digital teaching. Afterwards I boarded a Columbus City bus only to face a woman who loudly asked if she “could pray for me”. She assumed blindness was a sad matter—or worse—a sign I needed spiritual rescue. My guide dog shook his collar. Suddenly I felt wickedly improvisational. I stood up, grabbed the overhead pedestrian bar, and announced loudly so every passenger could hear: “Certainly Madame you may pray for me, but only if I can pray for you, and in turn pray for all the sad souls on this bus—souls buttressed on all sides by tragedies and losses, by DNA and misadventures in capitalism, for we’re all sorrowing Madame, we’re all chaff blown by the cruel winds of post-modernism. Let us pray, now, together; let’s all hold hands!” She fled the bus at the next stop. Strangers applauded. Improvisation allows us to force the speed of associational changes, transforming the customs of disability life. Disability Studies scholar Petra Kuppers writes: If the relations between embodiment and meaning become unstable, the unknown can emerge not as site of negativity but as the launch pad for new explorations. By exciting curiosities, by destabilizing the visual as conventionalized primary access to knowledge, and by creating desires for new constellations of body practice, these disability performances can attempt to move beyond the known into the realm of bodies as generators of positive difference.

The polarizations, magnetic fields of crippledness are generators. It is not true that rebellion simply makes us old. We’re old when we give up.

And yet…the fights before us are promising to be both rewarding and very hard.

So 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.

Yet I declare cripples are beautiful and we’re at the whirling heart of this life and never at the edges of the constellations.

Living Beyond Disability: A Poet’s Reflection

I grew up on a steep divide but it wasn’t geographical. Instead it was a ridge or a chain of mountains both inside and outside me. I didn’t wish to be blind. I wanted to play baseball. And perhaps, more significantly, I wanted to be a scientist. Neither baseball or physics would happen for me. I became a poet. Compared to physics I think poetry is easy. All you have to do is step barefoot on a worm like Theodore Roethke, and you’ve got a poem. Poems fall out of cupboards like a box of starch loaded with spiders.

A popular phrase in advocacy circles is “embrace your disability”—but I’ve always thought the “d” word too mountainous for a hug. No one who’s disabled experiences a singular thing—a kewpie doll of physical difference that can be clutched to the chest. No. You can’t embrace your disability because, in fact, it’s a chain of mountains—highly articulated peaks with physical and metaphorical obstacles. I can’t stand it when I hear someone say “embrace disability”—one might as well embrace the Grand Tetons.

But I have another reason for hating the phrase “embrace disability”—one thinks of how difficult “embraces” really are for the disabled whose hopes for love and sexual life are often next to impossible.

Do you embrace your human loneliness and the near impossibility of intimacy with others?
Do you embrace your unemployment? The erosion of rehabilitation and health services?
Or the fact that doctor’s offices in the US are largely inaccessible?
Or that colleges and universities are woefully trapped in a 1970’s model of disability services?
Or that public transportation, especially airlines, treat you like a cockroach?

So I don’t like the word “embrace” which is just plain tomfoolery. And I don’t like “accept” because it’s too passive and vaguely defeatist.

Exult. Rejoice. Be rapturous. These are all too American. Don’t worry. Be Happy.

It just isn’t easy. The emotional rain isn’t gentle.

Once upon a time in Ithaca, New York, I encountered a man, a rather disheveled and clattering old man, someone the locals seemed to know, for we were in a diner, and he was going from table to table chattering with breakfasters, not asking for money, but essentially playing the role of the Id, sassing people, perhaps in ways they required, who could say, but there he was, pressing into each person’s space, piercing the psyches of strangers with his needle. He called a cop “Porky” and an elderly woman “Grandma” as he lurched steadily toward me. “Oh Doggy!” he said. “Doggy doggy doggy!”

Then he said, “What kind of fucking person are you?”
I tried my best Robert deNiro impression: “Are you talking to ME?”
He was not amused.
“A prisoner!” he shouted, for the whole diner was his stage. “This dog’s a prisoner!”

For a moment I felt the rising heat of embarrassment and rejection. Then, as he repeated my dog was a slave, I softened. In a moment of probable combat I stepped far back inside myself, not because I had to, but how to say it? Corky was unruffled. She actually nuzzled my leg. The nuzzle went up my torso, passed through my neck, went straight for the amygdala.

I smiled then. I said, “You’re right. And I’m a prisoner too.”

I don’t know if it was my smile, or my agreement that did the trick, but he backed up, turned, and walked out the door. Strangers applauded.

I’d beaten a lifetime of bad habits. I hadn’t fallen into panic, or rage, or felt a demand to flee.

I sat at the counter, tucked guide dog Corky safely out of the way of walking customers, and ordered some eggs. I daydreamed over coffee.

When I was eleven years old I fell onto a pricker bush. It’s hard to say how I did it, but I was impaled on hundreds of thorns. My sister who was six at the time, and my cousin Jim who was maybe nine, fell to the ground laughing as if they might die. I begged them for help which of course only made them laugh all the harder. I remember tears welling in my eyes and their insensible joy. I also knew in that moment they were right to laugh—that I was the older kid, was a bit bossy, disability be damned. I was the one who told my sister and cousin what to do. Now I was getting mine. My just deserts. In the end I tore myself from the monster shrub and stormed into the house. I sulked while they continued laughing outside.

Perhaps I thought, there in the diner, I could live henceforth in a new and more flexible way.

“Is it as simple as this?” I thought. “One simply decides to breathe differently.”

I saw, in a way, it was that simple.

Saw also how a dog can be your teacher. And while eating wheat toast I thought of the Buddha’s words from the Dhammapada:

Live in Joy, In love,
Even among those who hate.
Live in joy, In health,
Even among the afflicted.
Live in joy, In peace,
Even among the troubled.
Look within. Be still.
Free from fear and attachment,
Know the sweet joy of living in the way.

But you see, that’s the poet in me. It’s easy to imagine disabled life is a matter of grace.
And though I have these moments, I know I’m high in the Grand Tetons, still looking for a path.

And so I’m getting to my point. We are in the fight of our lives, all of us who hail from historically marginalized. This is a fearful time. I want to fight for us all. Embrace or don’t embrace your disability Stephen. Its all the same our there where so many are prisoners. Be better. Think a little bit about John Lewis. Think of good trouble. Right now the emotional rain is toxic. Get your umbrellas.

Huffington Post: Dogs in the Playing Field

I’m so very pleased to mention I’ve been invited to be a guest blogger for The Huffington Post. It’s quite an honor. Below is an excerpt published yesterday, December 4. I’d be grateful if you’d visit the site and if you like the post, please feel free to share it with your social circles.  Thank you!

Dogs on the Playing Field

Steve Kuusisto & guide dog, Corky

No one gets a free pass to public life — “public life” — the elusive goal people with disabilities strive for. While the village square is sometimes difficult to enter often a service animal can help. In my case I travel with a guide dog, a yellow Lab named Nira who helps me in traffic. Together we race up Fifth Avenue in New York or speed through O’Hare airport in Chicago. We’re a terrific team. But even 23 years after the passage of the Americans with Disabilities Act and 70+ years since the introduction of guide dogs in the U.S. life in public isn’t always friendly. Lately it seems more unfriendly than at any time since the late 1930s when the blind had to fight for the right to enter a store or ride a public bus. What’s going on?

Read more of Dogs on the Playing Field

Dog Schmooze

Professor Stephen Kuusisto is the author of Eavesdropping: A Memoir of Blindness and Listening” and the acclaimed memoir Planet of the Blind, a New York Times “Notable Book of the Year”. His second collection of poems from Copper Canyon Press, “Letters to Borges has just been released. Listen to Steve read “Letter to Borges in His Parlor” in this fireside reading via YouTube. He is currently working on a book tentatively titled What a Dog Can Do. Steve speaks widely on diversity, disability, education, and public policy. www.stephenkuusisto.com, www.planet-of-the-blind.com

Allies: the Theme of the 33rd Disability Blog Carnival

Ruth has put together the 33rd (WOW!) Disability Blog Carnival and it is now available on her blog, WHEELIE CATHOLIC.  Borrowing from Ruth:

"The theme of this carnival is "Appreciating Allies". So, what and who are allies? Wikipedia says
that " those who share a common goal and whose work toward that goal is
complementary may be viewed as allies for various purposes even when no
explicit agreement has been worked out between them."

Ruth
pointed out that there are opportunities for those of us in the
disability community to act as allies. In so doing, she was kind enough
to mention Anna’s Pakman’s survey on Media Consumption and people with disabilities on her carnival.  According to Anna:

“the Nielsen ratings track media consumption for just about
every population EXCEPT our community so the only way I can get this
data is through your assistance. All individual survey responses are
anonymous and will be kept strictly confidential.”

This
is a perfect opportunity to say "thanks" to all ALLIES who in one way
or the other support our efforts. And a special thanks to Ruth.  We are
fortunate to consider her an ally, as are many others.  Of that we have
no doubt.

Cross-posted on Blog [with]tv and Crimes Against People with Disabilities.

Disability Blog Carnival #22: Resilience

Clearly Jodi, from Reimer Reason, has put a lot of work into this most recent edition of the Disability BlogSpider
Carnival.  Her theme is "resilience" and she, like her contributors, has put some thought into this….

"Welcome to the 22nd edition of the Disability Blog Carnival! In honor
of this being the 22nd edition, I have for you twenty-two posts on the
subject of: Resilience. I have loved reading all of the posts submitted
and in doing so I have learned quite a bit about the things that make
people resilient. There are people who use humor or call on their faith
in God. There are those of us who adapt, persevere, adjust their
perspective, come to accept, see beauty, find joy. Fasten your seat
belts, because you are about to meet some incredible people."

When
you stop by Jodi’s site to read through these posts, take a moment
won’t you, and write her a comment.  Bloggers love feedback!

Cross-posted at Blog [with]tv