Thirty for Thirty on the ADA: “Essay Seven: It’s Life Itself”

Cover of Planet of the Blind....man and dog....

As we near the thirtieth anniversary of the Americans with Disabilities Act I’ve decided to post thirty short essays about the law, the anniversary, and the cultural impact of #ADA @30. I’m doing this as a disabled person who’s lived half his life before the ADA. I’m reflecting on the “before and after” of the law.

Essay Seven: “It’s Life Itself”

Disability life is life. It’s not a secondary or sub-sectioned existence. It is life. It’s life the way life is, on a day when you see the wild geese heading south and north at the same time. It’s life knowing music is cultivated time and knowing time heals nothing.

It’s that day long ago when I went to the typewriter repairman in Helsinki. I was blind and he was deaf. We communicated without social workers. It’s life.

And it’s walking in slow circles around an unfamiliar town just to get a map in your head and why not?

The disabled know what life is because they’re living it unmediated.
The disabled are not soft.
When they hold rulers they know what they can’t measure.
They know about scaring the able bodied always and not just on Halloween.
They piss off the righteous and politically narrow for they require straws.
Scarecrows love us for we give them something to look up to.
It’s life you able bodied narcissuses look up from your ponds.
It’s life with its dropped eggs and dirty windows.
It’s the side-eyed glances of children who can’t decide if cripples are cool.
Here it comes.

This is the ADA @ 30. Real life. Brought to you by an awakening.

**

In 1972 I took it into my head to end my life. It was easy: suicide was in the air. Today when people talk about the idealized late sixties and early seventies age of activism and protest, the “summer of love” or other trappings of youth culture they generally do so by way of nostalgia. But those were hard days and in my case daily life as a blind teen was becoming so difficult, in fact so preposterous, all I could do was self-medicate and starve.

No doctor or psychologist succeeded in diagnosing me. Anorexia was not widely understood in those days, and it was, in any case, thought to be a condition affecting girls.

They put meat on a string down my throat and took notes. I knew the obstreperous orderlies were Nazis. Knew the doctors were simpletons—knew the word itself described the children of simple people. I was 17 and in love with death and by Christ I wanted anyone who came in contact to see I was in love with it.

I loved Mick Jagger and John Lennon. Both were on heroin. Looking like you were at death’s door meant commercial success. Maybe if I looked that way someone would like me.

The gullible sad boy inside me was desperate for friends.

All that boy knew for sure was the adults were addled on booze and Nixon; the high school was a pipeline to prison; most of his teen acquaintances were cruel.

The gullible boy hadn’t read Kafka’s “Hunger Artist”. Hadn’t read Donald Justice’s poem “The Thin Man”:

I indulge myself
In rich refusals.
Nothing suffices.

I hone myself to
This edge. Asleep, I
Am a horizon.

When my “edge” became 98 pounds I started dreaming of life outside the body, dreams filled with clouds and snow. If there were people in my dreams I don’t remember them. Horizon dreams require no people—that’s one thing I learned from the unconscious in that bad year.

But awake I was easily deceived. I thought rock stars were tutelary angels. I imagined there were people in the world who would reach out to me, hold me close, cry out for my sake.

There were no such people.

My parents left me in the hospital, then drove home to drink whiskey.

The man in the bed next to mine spoke no English. He was from eastern Europe. He staggered from his bed, raised his gown, and proudly showed me his abdominal scar.

I remember thinking he’d achieved something.

One night I unplugged myself from the bed and wandered the halls of the hospital.

Strange to think a blind kid could walk the wards unnoticed but such things happen.

I heard weeping from many different rooms.

I heard nurses laughing from a stairwell where they’d gone to smoke.

My teenaged looted brain believed all sorrows were confirmatory.

Perhaps because I survived this period of my life the above awareness is why I hate Salinger’s Catcher in the Rye. Holden Caulfield is a liar. Anyone is a liar who thinks all sorrows are confirmatory. Or not a liar, but something more sinister, a projective delusionist.

Every day I meet my teen self. He’s still starving. I let him in.

Now the mystery is this: how did I get out of the Mick-Jagger delusional self-erasing, culturally confirmatory art of dying?

The psyche ain’t Hollywood. There was no single incident of transformation. And yet there was something “close” to that—a high school acquaintance had given me a book of poems by the poet Kenneth Rexroth. One day, holding the book an inch from my one “reading eye”—the eye I could use for close examination, though not for long, I read the poem “For Eli Jacobson” and began the tangled, slow, confused journey that all free thinkers must begin—that trip through the hard politics of our age, remembering the good souls who have come before, and yes, pledging our own merits, our own resolve to not give up. Here is Rexroth’s poem:

FOR ELI JACOBSON

December 1952

There are few of us now, soon
There will be none. We were comrades
Together, we believed we
Would see with our own eyes the new
World where man was no longer
Wolf to man, but men and women
Were all brothers and lovers
Together. We will not see it.
We will not see it, none of us.
It is farther off than we thought.
In our young days we believed
That as we grew old and fell
Out of rank, new recruits, young
And with the wisdom of youth,
Would take our places and they
Surely would grow old in the
Golden Age. They have not come.
They will not come. There are not
Many of us left. Once we
Marched in closed ranks, today each
Of us fights off the enemy,
A lonely isolated guerrilla.
All this has happened before,
Many times. It does not matter.
We were comrades together.
Life was good for us. It is
Good to be brave — nothing is
Better. Food tastes better. Wine
Is more brilliant. Girls are more
Beautiful. The sky is bluer
For the brave — for the brave and
Happy comrades and for the
Lonely brave retreating warriors.
You had a good life. Even all
Its sorrows and defeats and
Disillusionments were good,
Met with courage and a gay heart.
You are gone and we are that
Much more alone. We are one fewer,
Soon we shall be none. We know now
We have failed for a long time.
And we do not care. We few will
Remember as long as we can,
Our children may remember,
Some day the world will remember.
Then they will say, “They lived in
The days of the good comrades.
It must have been wonderful
To have been alive then, though it
Is very beautiful now.”
We will be remembered, all
Of us, always, by all men,
In the good days now so far away.
If the good days never come,
We will not know. We will not care.
Our lives were the best. We were the
Happiest men alive in our day.

For some, a minute comes when customary thought is broken up. The breaking can be like kindling or burglary—either way it promises a coming time. At 17 I hadn’t read much poetry. I’d read George Orwell plenty and accordingly I could guess at some of Rexroth’s footprints.

I had to read beneath an electric blanket set on the highest number. My ribs were clear, my skin translucent. I was a lonely isolated guerrilla. I didn’t yet know I was fighting for disability rights. Had no idea I would some day live in the days of the “good comrades”—my friends in the disability movement—too many to name here. But how lucky I am to know them. To know even our defeats and disillusionments are good because we can envision the inclusive world of dignity and peace.

Well I don’t know. How can you tell others, how can any of us tell others, we were lifted by things as small and true as elegies? That in our despair we saw, somehow, against all the odds the sky is bluer for the brave?

In the good days now so far away we will have worldwide disability rights.

We will not starve for lack of of knowing our lives were the best.

**

The ADA @ 30….

We are not experiments.
We’re not failed fashion statements.
We’re not fake characters in lousy novels. (“All the Light We Cannot See”)
We don’t need permission to vote, work, love, live.

The ADA @ 30…

We do need health care, jobs, inclusive higher education…

For we are life itself.
Not ideas about it.

Author: skuusisto

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

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