Author: stevekuusisto

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

McLean, Virginia, December 1978

By Andrea Scarpino

 

A house burns in the background of Joel Sternfeld’s photograph: orange flames rise in a slant from the roof, a fire truck’s long arm and basket draw near. In front of the burning house, what looks to be a roadside stand, some pumpkins stacked neatly for sale, some broken and rotting in the foreground as if thrown from the stand.

 

One firefighter in a yellow jacket, helmet, tall boots. Not fighting the fire in the background but choosing a pumpkin from the stand.

 

For as long as I can remember, I have had anxiety, panic attacks, have woken in the night to worry about things over which I have no control: the possibility of planes crashing, losing my job, nuclear attack, the sun exploding. I have vivid childhood memories of crying in bed with worry that my baby brother would someday use drugs.

 

Last year, an internal medicine specialist asked me if I spend most of my time thinking and living in the present, future, or past. We sat in an exam room while she clicked through PowerPoint slides of the brain. I wanted answers for my chronic pain and she kept turning the conversation to meditation and prefrontal cortex activation.

 

‘Future or past,’ I answered, annoyed, already narrating in my head the story I would tell about our interaction. She nodded.

 

Yesterday, overcome with distraction, I sat on my office floor and watched the sky outside my window: robin egg blue, quickly moving cumulous clouds. I thought about Sternfeld’s photograph: the house burning in the background, a firefighter buying a pumpkin. A metaphor for living in the present?

 

We have very little control of the future and no control of the past. My internist was clear: worry changes nothing except the neural pathways in our brain.

 

Backstory: the burning house was part of a training exercise; the firefighter choosing his pumpkin was on a break.

 

Boston Marathon bombings. Causalities. One photograph: a flash of orange flames as runners near the finish line.

 

“Write down this meditation,” my internist had said. Yesterday, I sat on my office floor, unfolded her words in my lap:

 

Let everything I see, let it be good.

Let everything I hear, let it be good.

Let everything I say, let it be good.

 

Again and again, I said her words quietly. I watched the sky.

Boston

The age of the great symphonies is over–the line from a Norwegian poem–and what else can you think when the world is now a clattering machine built from violence and propaganda? I know there are excellent composers alive and working. But it is our age, our time that’s the problem. We are smaller by the hour because we need to accommodate ourselves to an era that feels like we’re living in the London Underground.

 

I prayed last night as I often do. I thought what I try to imagine are large thoughts–prayed for souls lost, lives cut short, for those who suffer from violence and poverty. My prayer went up in the dark with a billion other prayers. That collective, untranslated, uncaptured prayer is the symphony of our age.

 

Poetry and Your Neighbors

I have tried for years to answer the question: “what’s accomplishment for?” since I live in a nation where great universities have sanctioned and promoted imperial wars. The answer can’t rest with the protection of the inner life (as it does for many) but must have a good deal to do with a paratactic question: “what can I do to alleviate the sufferings of others?” Many poets who say they are “political” never ask the second question.

Trayvon Martin: A Disability Perspective

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.  

via www.planet-of-the-blind.com

I'm reposting this piece about the intersection of Trayvon Martin's tragedy and disability.

The Rococo-Loco, Our New National Bird

Enter the Rococo-Loco. Looks a lot like Paul Ryan. But wait! Looks like Barack Obama! Holy Cufflinks, Batman! The stylized wealthy have occupied the Democrats! No to Social Security (conceived as security). No to health care for impoverished women and children. No to special education. No to your damn uncle who fought in Iraq!

 

Half donkey, half elephant, even the blind men in the old joke know what this thing is. It’s Rococo-Loco by day, a Fascist-sauropod by night. See it snacking on the old and infirm.

A Memorable Fancy

I wanted to be productive so I wrote a poem–

It was about Orpheus and all his birds

So every bird was in it, the linnets and thrushes,

Arctic terns, birds clear with light.

All the birds in the world

And all the birds that had ever been

Were in the poem, and you know,

It was not beautiful but terribly alive

Like a god who assumes a single shape

In sudden wind.

The Holy Writ

Republicans talking about the constitution are like those men you see in restrooms, the ones putting water on their thinning hair.

 

Democrats talking about the constitution are like nervous shop keepers, afraid of shoplifting.

 

Most Americans fail to understand the constitution was a document designed to appease slave holders. The Founders didn’t imagine it lasting more than twenty years.

 

The founders did not give the Supreme Court the power to interpret the constitution in the way that Marshall essentially invented.

 

The US should have a constitutional convention every 8 years. We might then become a nation with a government “by the people”.

 

I’m just daydreaming in the Moline, Illinois airport. I’m a utopian in a plastic seat.

Of Disability and Ambition

Wellness is not suborned to ambition, but is ambition itself. I’ve been in mind of this lately because I teach disability studies and travel widely as a disability contrarian, if I do say so myself. Wellness is ambition and not an abstraction. By this I mean that wellness differs from the dichotomous “illness vs. cure” trap disability advocates often fight–for you can be “well” though you’re blind and deaf, have MS, or a thousand other life function obstacles. This is elementary to many people with disabilities as we have necessarily learned how to live. By “many” I mean the fortunate of us, those with accommodations and prospects. These are not guaranteed and make no mistake about it, the right wing is doing everything it can to unfund disability social security. ABC’s infamously “disability-hostile” tabloid program “20/20” is poised to regurgitate all the histrionic and inaccurate characterizations of disability fraud that NPR has shamelessly unleashed in recent weeks. Accommodations and prospects are hard to acquire if you are a person who has entered the kingdom of disability as an older citizen. But I digress. Wellness is not about being cured but it is about choosing to live with dignity and spirit.

 

The boxer Mike Tyson once said “I don’t know how to live in the middle of life” which is a poignant thing for an athlete to admit and to which we may add “it’s always the middle of life” and yes, knowing how to live must have ambition which is wellness. It is a decision, then a practice, and requires only its own commitment. It is the story of Siddhartha. But it’s also a disability story.

 

I wish more disability activists could say this. My general impression is that people with disabilities are so caught in the business of declaring they’re not inspiring they lose the chance to share the acquired and hard to learn facets of living well. Instead we undermine ourselves, say with cynicism we’re just “super crips” (putting off all considerations of human success, deflecting them) allowing the ghost of Tiny Tim to rob us of all language having anything to do with emotional intelligence and social success. This isn’t good. And it isn’t fair to ambition.