Author: skuusisto

Poet, Essayist, Blogger, Journalist, Memoirist, Disability Rights Advocate, Public Speaker, Professor, Syracuse University

On Not Being Hasty

There’s a Brazilian saying, “haste is the mother of imperfection” and accordingly I must be perfect by now. This is because I’ve spent my life trying to convince sighted people that being blind is a perfectly acceptable way of living. Or more than that. Blindness is life as life itself, a central feature of being alive, just another fact like candy or coconuts.

I am not hasty. I am however tired of bigots who demean people who hail from the margins. I see trans rights as being every bit as important as disability rights. And right now I’m frightened for one of the major political parties in my nation has decided to declare war on historically marginalized people. I don’t think “war” is too extreme for the aim is make people illegal, both on the printed page and in the public square. The aim is to remove us.

The disabled know something about this. We’ve been in the asylums, the special schools, the sheltered workshops.

I am not hasty. Abled, white, cis-gendered men and women are throwing dangerous tantrums. I’ve lived their BS. Been told “you can’t come in here”; “can’t be part of this class”—“isn’t there some special place for you?”

Yes, There’s a special place for my people. It’s called America.

The Iroquois people have a saying: “Remember your children are not your own but are lent to you by the Creator.”

The Ableism River

A woman sneered at me yesterday afternoon. We were on an airplane. Her seat was next to mine. Spotting the guide dog at my feet she pitched a fit. She told everyone within earshot that she was allergic to dogs. She needed immediate attention. She demanded a seat in First Class. She was, as they say, a “hot mess” and I tried to empathize—who am I to say she didn’t have allergies or that this wasn’t a deep inconvenience for her? Yet her nastiness was the thing. She was affronted by the very idea that I was “there” in that space. She sizzled with contempt.

If you’re disabled you know all about the contempt sizzlers. As Mark Twain would say, “you’ve met them on the river.”

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More about the river…

The river is god itself. Not your ideas about it. Not your yearnings. It goes about its business, moving the glory of creation wherever it needs to go. Children sit on the banks dreaming. This is proper prayer.

The ableists’ river is also god itself. Its where self-contempt goes to bathe. And here come the cripples, floating down stream like loaves of bread…

**

You see, some days a cripple just doesn’t know what to say.
River. Bread, Children. Dreams. God in the mix. And sad strangers who can’t speak our language.

**

I wish that woman with her dog allergy well. I don’t think she had an allergy at all. It was in her voice. Studies show you can spot liars by their intonations. Hers said: “I’m a nasty, self absorbed wart of a person. And I want you to pay attention to me.”

The dog just slept.

You Should Read Spinoza…

Alright. Try this: everyone I know is going to die alone even if those who love them stand nearby. Early in the morning when I’m still a young man I think of the wings I’ve been crafting in secret all my life.

**

Now and then someone calls me on the phone and its an accident—wrong number—and before I hang up I always say, you know, you should read Spinoza…

**

Walking with my guide dog in a winter city, ice falling from the high buildings. We’re nearly struck by a chunk of lethal frozen water. Its a close call. So many days, so many near death experiences navigating the ordinary. This is why the ancients painted on the walls of their darkened caves.

**

There’s a Neanderthal ghost and I’ve named him “Nandy”
He turns up rather often and gives me ghostly candy
Its the stuff of starvation, its all you need to know
The candy is simply pebbles you suck on as you go…

**

Everywhere I turn there’s an article about poetry being dead and I don’t get it. I suspect they’ve substituted “poetry” for laughter.

**

There are two streets for guide dogs and their partners—the visible one, the one with the traffic—then there’s the hidden one, seen only by dog and man—the road of moonbeams and faith.

Leaving Home

First I say goodbye to the insects
The sad roses and old books
And draw a cloth down
Over my head
To honor the day
Which is still unformed
Like certain bird throats
Like clouds approaching infants
I say farewell
Because trust
Is a clear nothing
Hoarding somewhere
Many treasures
Do you hear the post horn?

For Sam Pereira

We have friends in common my friend, my friend,
And once in the darkness of winter
As I was young and flighty
More alone than not
I planted my walking stick
In the drifts and said
Echoing Doc Williams
“I am lonely, best so,”
And shouted “no more friends,”
Because that’s what young men do

I’m old now and see the error
Though everyone I love
Lives down the road, down the road,
All my friends live down the road
The poem holds a door open

The American Doctor

If you’re disabled you know the doctor won’t see you now; or the doctor will see you but only after you’ve abandoned your silly wheelchair. Did you know that over 70 per cent of medical offices in the United States aren’t accessible?

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How many fingers am I holding up? They actual ask me that. After they’ve patted my guide dog.

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Somewhere in the distance, church bells, the old fashioned medicine…

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Everybody’s got something to hide except for me and my disability…

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The doctor thinks he might have a hernia but he’s not going to tell anyone. He hates the body’s insults.

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The doctor falls asleep and dreams of water wings.

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The doctor throws white stones at the moon.

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C’mon! Throw that wheelchair away! You’re not trying hard enough!

Being disabled is to be always living in a peripheral state…

Being disabled is to be always living in a peripheral state. Those who don’t experience this don’t know how unfair and unstable crippled life really is. In order to mask this the non-disabled say that access is coming “tomorrow.”

So I sing “tomorrow tomorrow the accommodations will come out tomorrow” and wait for Daddy Ableist Warbucks to come.

If you’re a disabled person you know the drill.