“Who the Hell am I?” you ask, as in “who appointed you to speak on behalf of anyone?” This is the best of all possible questions. I seized the talking stick long ago and you should feel free to grab it back any time you like. But don’t design to take it—plans are insulted destinies and one elemental aspect of cripple-talk comes from the marriage of impulse and necessity. Before you use your tongue, know whether it’s time to voice a requisite inclination.
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 goods and boy does he ever have designs.
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 new book is a good place to start.