Author: stevekuusisto

Some days when I think about disability I feel the need to hold my head. Of course this isn’t a new thing—I’ve been clutching my noggin since early childhood. If you’re like me and you were disabled as a kid you know all about early despond. And if you’re especially like me you learned to use humor to your advantage starting early. I remember when I was about six years old a bully approached me on the playground. His name was Grimes. Nobody knew what Grimes’ full name was. He was just “Mean Grimes”. People said he was mean because his father made him work all day digging a cellar under their house–it was just Grimes down there with a shovel and a flashlight. When he came out he was mad as a hornet and everyone tried like hell to stay away from him.

The first thing you should know about Grimes was that he smelled like wet earth. He spent so much time under his house that he stank and because his parents didn’t care how he looked or smelled, he was essentially a moving mound of dirt. Back in those days no one paid much attention to things like that. Nowadays the school would probably send somebody to Grimes’ house to talk to his parents but not back then. I used to sit next to a kid who smelled like manure and he had hay sticking out of his socks. That’s the way it was. And sure, maybe because I was blind I noticed the smells and sounds more than other people. I can’t say.

Oh but poor Grimes! Now that I think about it I see he was more miserable than I was. My only problem was I couldn’t see. But I had some friends and a great family. My dad didn’t make me dig a basement. In fact my father read to me every night from smart, funny books like The Adventures of Tom Sawyer. He’d even do the different voices. My dad could do a very scary “Injun Joe”. Now, all these years later I suspect Grimes parents might not have been able to read. Hindsight has its advantages. I can feel sorry for Grimes.

But anyway, he did go after me on that playground by the abandoned swings. I recall thinking it was strange no one else was around. But of course that’s the way it always is with bullies— they know how to pick their spots.

“Hey Blindo!” Grimes said. He leaned close and his breath smelled like Juicy Fruit gum. (To this day I can’t stand the smell of Juicy Fruit.)

“Hey Grimes,” I said. “To what do I owe this inestimable pleasure?” (I was always using words like “inestimable” even in the second grade. Let’s be honest: rascals love lingo.)

Grimes grabbed my coat. He said something that I can’t repeat and spit a wad of Juicy Fruit in my face.

“I’m going to make you eat this dirt!” he said.

(Grimes always carried mud in his pockets so he could force kids to eat it whenever he found the right victim.)

We were on a playground in Durham, New Hampshire. The year was 1962.  I had thick glasses and I was smaller than my classmates. Grimes was as big as a barn.

“You will eat this,” he said.

“It looks good,” I said. “Hey Grimes, have you ever eaten an acorn?”

Grimes held his dirt carefully before him like a little pillow.

“An acorn?” he said.

“Yeah, they’re just like peanuts, really good, that’s why squirrels like them. You want one?”

“Sure,” he said. He held out his other hand and I dropped a neatly shelled acorn into his palm.

“Go on Grimes, its yummy!”

Grimes ate it. Then he turned red, and I mean red, not beet red or fire engine red—he was red as an unkind boy with his mouth swollen shut. Acorns are among the bitterest things on earth. And of course I only knew this because I’d tried one. As I said, I was a solitary kid. I spent a lot of time in the woods. Those were the days when kids could still go to the woods.

Grimes was incapacitated. I don’t think he ever bothered me after that.

I still recall the thrill of my discovery. That language could render a nemesis harmless was rousing.

I didn’t do a little dance. I didn’t brag about the matter. But I was a more powerful boy after that.

Other kids could tell I was different, not just because I couldn’t see but because I could talk. I was fast. I loved words. I laughed a lot. Kids are smart: they can tell who has the power of invention within their group.

I became a kind of “Pied Piper” in our neighborhood. I talked kids into doing all kinds of stuff. My cousin who was only a year younger than me rode his bicycle blindfolded and he was pretty good at it until he rammed a tree. He got up quickly and dusted himself off and tried it again. And one day we even got Grimes to try it. I asked him how tough he thought he was and he said “plenty” and we put the blindfold on him and yelled “go!”

He wobbled uncertainly, his front tire wildly skewing and for a moment it looked like he’d fall but then he straightened and pedaled with a beautiful sense of urgency as if by going fast he would defeat any unseen obstacles in his way. For a while he was amazing. We cheered. We saw that there was a remarkable improbability to the whole thing. The biggest bully in town was riding a bicycle while pretending to be blind. He was pedaling hard. I wondered if he was trying to ride right out of his customary life—I didn’t know of course but it was a good guess.

Grimes rode in big looping figure eights. He was absurdly upright. His elbows waggled and because the bicycle was too small his knees pointed out and the whole thing looked precarious but he went on and he never hit anything though he came close to an enormous rose bush and he barely cleared a bird bath. He rattled over the grass and displayed an ungainly superiority and we could all see he was afraid of nothing.

And that’s of course how Grimes and I became friends. Appearances to the contrary, we saw we were equally brave and we taught each other how to have some fun. One day Grimes convinced me I could climb the tallest tree in our vicinity and I did and by God I felt richly alive up there where the leaves were all so close and you could hear the wind.

And then there are the days I want to hold my head. Disability is not always funny. If you’re a disabled student in college you know a good deal about the structural oppression in higher education. If you’re trying to get a job you know how little disabled employees are valued.

But you climbed a tree with Grimes. Don’t forget it.

In disability there are innumerable obstacles to having what we often call an empowered life–Helen Keller comes immediately to mind. When she sought admittance to Radcliffe College she was compelled to demonstrate her literacy and endured tests designed to prove her written words and her inner life were not her own. How could a blind-deaf woman who used an amanuensis to communicate have an authentic and self directed capacity for language? In Keller’s case her natural talent with language was so far beyond the skills of her “teacher” Annie Sullivan, the matter was settled, if not quickly, speedily enough.

My reception as a blind writer who can speak has been less onerous than Keller’s though it’s not without its cringe worthy moments. During an interview for a teaching position at a major American university a writer-professor in their creative writing department asked how I could write so clearly about the world if I can’t see? Aside from its borderline illegality the question revealed how little some contemporary writers understand what language does at its most fundamental level. That all nouns are images had never occurred to my questioner, a well regarded fiction writer who presumably should have recognized what I said next: “I say strawberry, you see a strawberry; I say battleship, you’ll see it. Whether I’ve seen the poxy thing has no bearing on your reception–this is why poets were believed magical in ancient times.”

Literary language is often as much about the unseen as the seen. Accordingly Milton was the right poet to describe the vaults of hell. But what’s more interesting is the evident and often mysterious joy that comes from sensing the unseeable or unnameable in our reading. Joy is not always or invariably concerned with custom. Pablo Neruda, who spent many years alone as a young man traveling with the Chilean foreign service wrote:

I grew accustomed to stubborn lands

where nobody ever asked me

whether I like lettuces

or if I prefer mint

like the elephants devour.

And from offering no answers,

I have a yellow heart.

In literary consciousness solitude is always instructive. Filtered through Neruda’s imagination it’s both figuratively improbable and unforgettable.

If disability means one thing in particular, at least in my case, it’s been a strict schoolmaster of loneliness. You won’t see it. But like Neruda I too have a yellow heart.

Not long after a guide dog enters your life you see how little the public knows both about service dogs and disability in general. The two discoveries are what’s called “a paratactic reading” in literature—it means two pages have been placed side by side for comparison.

I was on a cross town Manhattan bus when a man smelling of incense and marijuana sat next to me. Instantly I remembered how I loved both those fragrances when I was in high school. When I was 17 I surrounded myself with cheap pot and sugary incense. The man’s odor threw me into memories of solitude and it didn’t feel good. Everyone knows the sensation. It happens anyplace. Old perfumes on the street…

The man (who said his name was John) asked if I ever gave drugs to Corky. It was actually more an assertion than a question. He said: “Man I bet you can really get that dog stoned!” Both love and loss always reveal their furies and I then made a relational mistake, assuming I could parlez vous with King John the Medicine Man. You don’t need a guide dog to make this mistake but I was discovering it helps.

“No, John, I’d never give weed to my dog,” I said. “She’s my eyes,” I said.

“She’s not your eyes,” he said.

“What do you mean?” I replied.

“I’m talking about your inner eye, man!” Then he said: “What kind of a blind guy are you?”

“You blind have inner sight,” he said.

“Your dog has inner sight too,” he said.

“You two need to get together man!”

“We ARE together,” I said. “We go everywhere side by side.”

“You’ve got to know your dog’s inner sight,” he said.

“Here,” he said, and he put a reefer in my hand.

“Smoke that with your dog,” he said.

“Thanks,” I said. What else could I say? I pocketed the joint. I knew I wouldn’t smoke it. I was beyond that sort of thing. Maybe I could “gift” it to someone. Maybe I’d just throw it away.

“Look,” I said. “my dog needs her wits. We have a good relationship without weed.”

“No, no!” he said. “You have a big moon inside the two of you, you’re both walking it, you need to go there.”

I was scanning The Huffington Post when I came across a piece entitled: “Why I’m an Angry White Guy.” I didn’t read it. I’ve enough anger from a life of disability discrimination to fill an abandoned shopping mall in Detroit.

To be clear: I don’t believe angry white men aren’t entitled to vent. I’m all for venting—that’s what a free society is all about. Vent White Guy! (Though you’re really pink for the most part.) Go on, vituperate Bro! Go get ‘em! Us black, queer, womanish, and/or crippled types have been howling throughout history. If you want to sing in the beastly opera, come on in.

But I know you don’t want to join the chorus of the disenfranchised. You’re angry because them Indians, them Negroes, them women who refuse to stay home, them pesky disabled, all them atheists and abnormal types have pushed you into a corner, an imaginary one yes, but a corner you fervently believe in nonetheless.

American anger is circumstantial and always in the air. We’re meant to be angry. Democracy depends on discontent. Every citizen has sand in her oyster. If you’re alert enough you’ll know what truly ails you. Our venting white guys are not awake, not in a true sense, though they feel things. They are, as John Lennon once said: “doped on religion, and sex and TV…” It’s hard to be angry at the right targets when you scarcely know who’s pockets are being lined with the advertising dollars that mediate and extend your unhappiness.

Liberals don’t understand the Venting White Guys. They blame Fox News for brainwashing them, or Reagan for letting them into the town square by inflaming long suppressed white intolerance and evangelical suspicion. I used to believe this as well, but then I revisited the Know Nothing Party, and the spiteful rhetoric of campaigns long past and saw that really, there’s nothing new under the sun.

Liberals also say that it’s all Lyndon Johnson’s fault for pushing civil rights—that his greatest triumph fractured the Democratic party forever—a fracture that Nixon took full advantage of; that the GOP has capitalized on ever since. This is also not true. This premise relies on the idea that racially intolerant Southern Democrats were somehow valuable as rank and file soldiers in the endless fight for the White House. In truth, had the Democrats campaigned avidly for diversity, rather than seeing it as a third rear wheel on the tricycle, they’d have been unbeatable consistently. Obama understood this potential.

Angry white men are mostly 11 year old boys who’ve gotten large. They think the dark kid next door is going to steal their lunch money. They like girls but only if they’re malleable. They hate their parents (the gummint, as Huck Finn’s father would say), they love to parade around in their Duck Dynasty Sweat Pants.

But they’re a fact, like candy or coconuts. Trump has them drooling. Ted Cruz also.

If the Democrats want to be a national party, and not a faintly national party, they’ll work tirelessly both to expand their reach within historically marginalized communities, but also in the ruined suburbs. Bernie blames Wall Street. Hillary says she’s for jobs and progress. Neither alone is convincing enough in my view to offset the widening unhappiness of 11 year olds.

Bernie is closer to the gestalt.

God grant you’ve a dog at your side and a bigger heart than the one you had in childhood. And you’re mindful—if not prayerful than steadfastly self aware of your bounty for the dog, your dog, gives you her concomitant belief in the function of two. You are, together, a neurological “cat’s cradle” of strings: instinct strings and dashing strings; loyalty strings and strings of agreement for which we have so few words. Sometimes I think of invisible refulgent twine, glittering faith laces holding us together, the blind dude and his guide dog. Some strangers see it. A very old man in a rural Vermont hardware store sees us coming through the door. We’re with our pal Ralph. We’re looking to buy sneakers, for in this little town you buy your sneaks at the hardware which still has a faded sign out front that says “Dry Goods” and now we’re inside the shop which has an honest to God oiled wooden floor, the kind you have to sweep with sawdust and a long handled broom, and we’re standing in a swirl of rich leathery fragrances when the old guy says: “There’s two souls alright!”

God grant you’ve a kind wind on the lake. You and your dog push out from shore in your old rowboat. It’s hard for some to imagine, but the blind man goes rowing and often at night. The lake is peaceful then. The motorboats are gone. Sometimes we hear loons. There’s only a creak of oarlocks, the sprinkle of stray drops, and sometimes breezes make their sound of waves in the pine trees.

It’s instinct we love. It isn’t complicated. We love the small, celestial kisses of opportunity.

I’ve never been accepting of authority figures. If you’re disabled nothing’s worse than a junior high school principal unless it’s a college professor—the one who says your “condition” poses a serious problem in his classroom. (Translation: I’m a succubus, scarcely able to teach; who “lucked into” an academic position long ago; who opposes thinking about pedagogy to any degree.) Yes, I’ve met this “prof” more than once, both as a student and as a blind member of the faculty. Yes, he or she is still among us, preternaturally central and in every academic department. Let’s call her Professor Smugger. We’ll call him Dr. Weatherman. (I’m certain there are prodigal and acquisitive meteorologists but most stand before projected maps reading scripts someone else has prepared, wearing suits that wouldn’t pass muster in the former Soviet Union—you know the type if you’re on the faculty.)

They are the gate keepers, the neo-Victorians, even if their specialty is post-post-modernism or they profess to loving Walt Whitman, they believe their classroom is sacred space, rarefied, the very door to the classroom is a portal for the elect. How many times have I heard college faculty say, unguardedly, over coffee, “I teach for the good ones.” “Who are the good ones?” you ask. “You know them,” they say. Usually they walk away. Neo-Victorians see the world in black and white, good and bad, Jekyll and Hyde, civilized and primitive, though as I say, they imagine they’re post-colonial, gender informed, progressive. Cue the sound of screeching brakes. Dr. Weatherman is absitively horrified to find there’s an autistic student in his sanctum sanctorum. Oh Sweet Christ on a Crutch! The autistic kid has a note taker! Hinx Minx the Old Witch Stinks! This will never do! Everyone knows “learning” is a solitary matter.

When I was a graduate student and had readers who helped me conquer mountains of pages, who were variously reliable or unreliable according to the incontestable vagaries of their respective lives, which means I had to work extremely hard to not only schedule my help, but problem solve when help was not apparent, a matter Dr. Weatherman and Prof. Smugger will never imagine, for they believe the disabled student is merely a clay pot, a dingus, I learned that words are a communitarian matter, democratic, sweet, equalizing, and not always easy to attain. Which means I discovered what every writer has ever known. The literary arts are never leisure. Nor are they to be received like an office memorandum.

Department Chairs, Deans, Program Directors, and too many administrators to count believe they’re obligated to “have” the disabled on campus. In this way, their attitude is no more sophisticated than the view that they’re obligated to report staph infections or stolen cars. Authority figures on college campuses don’t by and large feel obliged to convey enthusiasm about admitting or supporting the disabled. As a matter of course the stories of disabled students cross my desk—how else should it be, I’m a reasonably prominent faculty member who belongs to the “crippled” set. I hear the story of a freshman who didn’t get note taking provided for her in a timely way and who in turn failed a class unjustly. The university has so far failed to redress the injustice. Administration deflects. Simple problems apparently can’t be resolved. One is tempted to believe that there’s a pervasive feeling, unstated, but true as rain, that if spoken would sound like this: “Isn’t it enough we’ve admitted them? Now you want us to problem solve? How do you like my Soviet suit?”

My Finnish grandmother, an authority figure if ever there was one, used to say: Tämä uusi suunnitelma on vastoin minun ajatellutapaani. (This new plan goes against my way of thinking.”

If you’ve a disability you know the phrase. Professor Smugger doesn’t like the fact you’re learning in a different key. She knows only one song. Everybody can imagine the title of that song.

It’s a game I play, substituting “dog” for crucial nouns in famous poems. “So much depends upon a red dog, glazed with rainwater beside the white chickens…” That’s a good dog. He keeps an eye on the hens. He might eat them of course but he’s loyal to his woman who stands outside our field of view. I think she wears a dress printed with sunflowers. I think it’s summer. So much depends upon that dog, her dog, her red dog.

“A dog has how many stars, they asked me in Paris, and I, wolf by wolf, began to observe the solar system…” (Forgive me Neruda, you wrote of cats…you wrote: “a star is the tail of a cat bristled in the sky”—pretty good my friend, pretty damned good.) But dogs do not bristle among stars, for they are the stars, infinite, unexplored, and more loyal than men can know.

“Let us go then you and I, when the dog is howling at the sky…”

“Oh Me! what eyes hath dog put in my head which have no correspondence with true sight…”

“The murmur of a dog, a witchcraft yieldeth me…”

I’ve always liked this homely diversion. There’s nobility to it. Some know. Best of all the dogs, the true dogs, sleeping by windows dark, do not care.