Early Morning and Thinking of Crip Memoir

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

Memoir is philosophical and then, ipse dixit, it’s a pile of scrap paper. In this way the memoirist must confront the unscrupulous and obligatory misery of making sense. This is like disabled life itself. Come on! Ask me how I got this way. Ask if I feel I’ve some value. Oh, and force me to prove it. The disabled writer contends with ablest inquiry. Were you born like that? Why do you keep living? In short the crippled writer must prove she, he, they are capable of reasoning while wearing a saddle.

I’ve been interested for many years in phenomenology. We are creatures who walk ourselves into knowledge—this is walking as metaphor because you can roll or sit perfectly still. I’m talking about self-consciousness as the means to articulated thinking. The first person pronoun has many doors in it. This is a thing all cripples know. They know it every day.


In one of his early poems entitled “Contagion” James Tate wrote: So this is the dark street/where only an angel lives/I never saw anything like it. I read that poem when I was twenty and saw the “dark street” as Emerson—saw the angel as Emerson’s strange angel which is also D.H. Lawrence’s strange angel, the wings are too much like ours; the wings are possibly sinister. In any case, we never saw anything like it and yet we always knew they were there—the wings, the humanoid specter, and our expectation they are a completion, one answer to the betrayals of phenomenology. Such a view is not Romantic, though plenty have said so. It’s tougher. It took Freud and Jung to show us what the figurines mean: they’re neither enemy or friend, but fact. How you will live, in what manner you will live, depends on what you can challenge yourself to admit about the angels. The ones I’m talking about are freakish angels and not the sanitized “idea” of the angel that Wallace Stevens preferred. Stevens’s angels are like those paper wrapped seats in the washroom—sanitized for your protection—and so they are not angels at all. Here is what the angels felt like to Lawrence:

The Song of a Man Who has Come Through

Not I, not I, but the wind that blows through me!
A fine wind is blowing the new direction of Time.
If only I let it bear me, carry me, if only it carry me!
If only I am sensitive, subtle, oh, delicate, a winged gift!
If only, most lovely of all, I yield myself and am borrowed
By the fine, fine wind that takes its course though the chaos of the world
Like a fine, and exquisite chisel, a wedge-blade inserted;
If only I am keen and hard like the sheer tip of a wedge
Driven by invisible split, we shall come at the wonder, we shall find the Hesperides.

Oh, for the wonder that bubbles into my soul,
I would be a good fountain, a good well-head,
Would blur no whisper, spoil no expression.

What is the knocking?
What is the knocking at the door in the night?
It’s somebody wants to do us harm.

No, no, it is the three strange angels.
Admit them, admit them.

Notice Lawrence’s angel is both the man or woman who feels wind blowing inside the body and then the angel is, when more fully realized, like a fine chisel, a wedge that rents chaos—a dangerous tool to be sure. Lawrence’s angel is a wire that pierces. Oh it’s imagination alright. It’s your dream. It’s your fear about the future. It’s your regret about the past. It’s your dead father tuning a piano in the underworld. As Robert Bly would say: It’s the distance between the head and the feet as we lie down. The freaky angel is us and not us unless we reckon with time. It’s our ambition. Our completion. It’s the hard work of consciousness which must admit what’s under the boat. (Ahab) or cry because space has pierced us with a sharp tip (Emerson’s cosmological Boston Commons). I like the word “freaky” better than strange. Freaky can’t be domesticated though we build churches or sideshows and put angels on pedestals so the frightened gazers can gaze and then go home saying, “well, I saw it—good thing it is not me.”

But of course the “freaky angel” turns up. It knocks if you’re lucky. Lawrence was lucky. His angels passed right through his carapace of fear, the lobster back of the psyche, and then he was stronger, undoubtedly weirder, perhaps thinner, maybe with the taste of honey and excrement in his mouth, happy to the point of rending his garments, and sharp, very sharp. Oh yes and he got there because he had tuberculosis and every minute was difficult and life felt provisional always.


From one of my notebooks;

One Day (A Micro Disability Memoir)

He sees at last infirmity is a trick.
something achieved with string,
a game played best on the floor—
puzzle, wish, fear, and ache
are what a magician is for.
Its raining as always
but he has a stick
and waves it at the orient wind.


“Well, the lamb must face the lion,” he says, entering the halls of medicine. Sometimes he thinks of doctors as howler monkeys. Sometimes he sees them as fish swimming in schools. “Doctors,” he thinks, “think their job is to defeat grief, poor dears.” They think a crippled man or woman can only be (at best) a victim reconciled. He wonders what Doc X was like as a child.


Why is he disability memoir so important? I think of my late friend Bill Peace who was admitted to Yale University’s hospital while attending a conference on disability. He had a heart attack. Because he was a wheel chair user they put him in a dark corner of the emergency room and left him alone for hours. I think you can see where I’m headed: more than thirty years after the ADA it’s still 1910. I pick that year at random but it serves the purpose: the disabled were fit only for the family’s tool shed or the asylum. In either case they were ignored. The ADA says we cannot be ignored. Plenty of people who do not currently have a disability think that having one is a monumental tragedy. When TV programs like “Dateline”feature a blind person they often say: “He was “Struck down” by blindness.” This old Victorian language still haunts every person with a disability. In his wonderful memoir “Moving Violations” John Hockenberry describes an encounter he once had with an airline hostess who, seeing that he used a wheelchair, opined that if she was in his shoes she’d probably have to kill herself. All people with disabilities can share stories like Hockenberry’s.


Three crows on my lawn,
All dance sideways
Pecking at the remains
Of a wreath…

When I was a lad, well, you know—
I lived in the warrens of an outlawed sect called “the blind”.


It’s time for us to get close. For now let’s imagine we’re on opposite sides of a tiny island. It’s a Robinson Crusoe situation. I’ll be Friday and you can be Crusoe. Most would choose to be Crusoe I imagine—he has all the goodies.

Older cripples, those who’ve lived some years before the Americans with Disabilities Act know something about emptiness. We grew up without Crusoe’s nails, drift wood, string, pulleys, guns, and whatever else he hauled away from his foundering ship. Cripple Island is, perhaps, not much of a place but Crusoe has accommodations, and moreover, like any son of industry he knows what to do with them. He builds little England.

Old Crips live in old haunts. In his new and exceptional memoir Hurricane Street Ron Kovic writes of life in the paralysis wards of the early 1970’s. Think “no civil rights” and without rights, think life without dignity—or better—the organization and assembly of life without dignity. Think horror:

Dr. M., the chief surgeon at the hospital’s Spinal Cord Injury (SCI) Center, walks past me. He is very tired but still he recognizes me and says hello. He has been in the operating room all day. His first patient, a paraplegic from D ward, had to have a flap put on his rear end for a bedsore that wouldn’t heal. There are a lot of them in here with that problem and sometimes the flap doesn’t take and they have to do it all over again. It can be very frustrating. Dr. M.’s second patient was not as lucky and had to have his gangrenous left foot removed. The nurses did all they could to save the foot but in the end they just weren’t able to. There are a lot of paralyzed guys around here with amputated legs. You can get a really bad burn and not even know it. I remember hearing a story once about a guy who came home drunk one night with his girlfriend and she filled the bathtub and placed him in it, not realizing the water was scalding hot. He got burned really badly and died the following week. There are a lot of stories like that and you try to never forget them. These are important lessons, and as horrible as it may seem, remembering them is crucial to our survival.

For nearly three months last year I was a patient here at the Long Beach VA hospital, healing a terrible bedsore on my rear end after a fall in the bathtub at my apartment. The accident happened not long after I had broken up with a woman named Carol who I first met at an antiwar demonstration in Los Angeles in the spring of 1972. Carol was the first woman I loved and the very first woman to break my heart. After we broke up I felt as if my whole world had fallen apart.

I was depressed and hardly getting any sleep at night. I remember putting a bandage over the bruise but it just kept getting worse. After a while the bruise became a sore and the sore an open wound, until finally I had to turn myself in to the hospital.

The last place I wanted to be was back in the Long Beach VA hospital. I hated the place. The conditions were atrocious, as bad if not worse than the Bronx VA in New York where I had been after I first came home from the war. The wards were overcrowded and terribly understaffed. The aides would sit in their little room at the end of the hall drinking coffee and cackling away as men on the wards cried out for help that never came. All the windows were tightly shut. The air was rancid, and I would push my call button again and again but no one would come to help.

The anger and frustration would build up inside me and I remember several times screaming into my pillow as I lay on my gurney until I was exhausted. I felt so helpless, so lost. During the entire time, in that depressing place, Carol never called or came down to visit me once. I felt abandoned, betrayed, and soon stopped shaving and began to let my hair grow long. I remember looking in the mirror one morning thinking how much I resembled Jesus Christ hanging from the cross. I thought back again to the Bronx VA when I had been stuck in that chest cast for nearly six months after breaking my femur, and how as I had lain on a gurney on my stomach I would paint pictures of the crucifixion with myself as Christ, and how they’d sent the psychiatrist down from the psych ward because they were concerned and I immediately stopped painting, afraid they would have me committed just like my Uncle Paul who had been beaten to death in a mental hospital years before.

For old crips there was always that need, a desperation to figure out how to live “for yourself.” Life was a terrifying mathematics—an algebra—part hope, part reaction, part belief. We’ll get somewhere with this chalk. Then they came and took the chalk away. “Chalk just makes you more hopeful,” they’d say. Accordingly old crips had to say, a la Beckett: “I can’t go on, I’ll go on.”

Maybe the better Beckett quote is: “Try again. Fail again. Fail better.”

Either way none of the Old Crips had prerogatives. If you expressed yourself in the wrong way the next stop was the mental hospital, make no mistake. One of the great backstories in American poetry is the fact that Allen Ginsberg’s iconic poem “Howl” represents his bold refusal to be quiet about the effects of forced institutionalization. (Ginsberg had been sent to a psychiatric hospital because of his queerness and his passionate intensity.) Yes, none of the Old Crips had “privilege”—unless screaming into your pillow can be understood as a private Theater of Cruelty.

Old Crips had to incorporate and gestate psychological, corporeal, and existential densities, literally hour after hour. In one of my college notebooks (written just three years after my own stint in a psychiatric ward) I copied these lines from Simone de Beauvoir:

Regardless of the staggering dimensions of the world about us, the density of our ignorance, the risks of catastrophes to come, and our individual weakness within the immense collectivity, the fact remains that we are absolutely free today if we choose to will our existence in its finiteness, a finiteness which is open on the infinite. And in fact, any man who has known real loves, real revolts, real desires, and real will knows quite well that he has no need of any outside guarantee to be sure of his goals; their certitude comes from his own drive.

This is the essential problem, often expressed to me by Old Crips: young cripples believe in an outside guarantee—for what after all is a civil rights law but a warranty, a certitude, a “writ” that should alleviate us from want? That is exactly what the ADA should be. That is precisely what it ain’t.

As disability rights activist Bob Kafka notes: “If we believed that ADA is the power and we are the recipients of its strength, rather than we are the power and ADA is a tool for us to use, I fear we may still have a long way to go.”

The ADA isn’t a warranty and worse, Old Crips will tell you, the power doesn’t reside there, just as it doesn’t reside in a hammer. The strength is in your mind. Easy enough to say, but harder to enact, especially if you believe there’s an ADA Geek Squad that will ameliorate the obstacles.

We like the ADA. But it hasn’t changed things as much as we’d predicted. If in fact we’ve a long way to go, read more tough people. Kovic’s book is a good place to start.


What is the knocking?
What is the knocking at the door in the night?
It’s somebody wants to do us harm.

No, no, it is the three strange angels.
Your crippled friends.
Admit them, admit them.

Author: skuusisto

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

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