Mark O’Brien’s writing appeared in The Sun from 1985 until just five months before his death in July of last year. We published many of his poems and contributions to Readers Write, but it was his long essay “On Seeing a Sex Surrogate” [May 1990] that stands out most in our memory. O’Brien wrote bravely about that experience and many others in a life shaped by polio, which he contracted at the age of six, and which left him unable to sit up or even breathe on his own.
Other authors have written about O’Brien in The Sun, including his longtime friend and collaborator Gillian Kendall. When we saw this moving tribute to O’Brien by Lorenzo W. Milam, another Sun author, we knew we had to reprint it. “Lifestyles of the Blind and Paralyzed” previously appeared in Salon and New Mobility.
— Ed.
Once, at a press conference, someone asked Eleanor Roosevelt if polio had affected her husband’s mind. There was a long pause, and then she replied yes, that it had affected his mind — it had made him more sensitive to the pain of others.
It was an artful response to a difficult question, but the truth of the matter is that polio did and does affect the mind. It made Franklin D. Roosevelt think he could run the United States for four presidential terms, through depression and war, without killing himself. And it made Mark O’Brien think that he — with scarcely an intact muscle in his whole body — could live independently, on his own, and at the same time be a journalist, a baseball fan, a publisher, a social critic, and a poet.
He did all these things while living alone in an apartment in Berkeley, California. Not content with that, he went about town on a Stanford University-built electric gurney. That gurney — with O’Brien lying atop it on his back, enclosed in a space-city plastic bubble — was forever and a day on the streets. O’Brien guided the machine with his right foot. He would zoom down the sidewalk, accidentally run off the curb, and the whole thing would topple over, dumping him out onto the pavement. Somehow he would dragoon the people around him into picking him up and sticking him back on top of his contraption, inside the cocoon, and then he would roar off again, ramming into walls and people, oblivious to the strange spectacle he made in a city so used to strange spectacles.
That O’Brien was out on the streets and not hidden away in some nursing home was a testament to his Irish dander. Remember, this is a man who — since the age of six — had the use of one muscle in his right foot, one muscle in his neck, and one in his jaw. That’s it. He made full use of all three. He used the foot muscle to steer his monster machine; he used the other two to bang with a stick on the keys of a computer, to write, cajole, editorialize, storm, cry, laugh, and rage. You tell me he wasn’t a nut case?
They educated him at home for the first twenty years of his life and then stuck him away in a nursing home. He put up with that for a while, and then one day he said, “I’m going to college.” He did, too — moved out on his own, at age thirty, got his degree (in English at UC Berkeley) in five years, then started graduate school. They should have applauded him — right? Not a chance. At one point, Social Security administrators tried to take away his benefits because he wasn’t keeping “appropriate records” pertaining to his part-time health-care attendants. They made him go through an extended hearing to keep his four hundred dollars a month. Your tax dollars at work.
O ’Brien’s special gift, I suspect, was his heart-stopping honesty. He wrote an article for a book I published about sex and disability, and I felt his personal revelations — about masturbation —were dandy but, well, a bit too personal. I asked if he didn’t want to use a pseudonym. He wouldn’t hear of it.
And when he finally, at age thirty-six, had his first taste of love, with a sex surrogate, he wrote a long essay about it that was published in several places, including The Sun. The paragraph about his looking at himself in the mirror has always struck me as one of the most poignant in all of disabled literature:
After she got off the mattress, she took a large mirror out of her tote bag. It was about two feet long and framed in wood. Holding it so that I could see myself, Cheryl asked what I thought of the man in the mirror. I said that I was surprised I looked so normal, that I wasn’t the horribly twisted and cadaverous figure I had always imagined myself to be. I hadn’t seen my genitals since I was six years old. That was when polio struck me, shriveling me below my diaphragm in such a way that my view of my lower body had been blocked by my chest. Since then, that part of me had seemed unreal.
He was honest about his sexuality — and equally honest about his loneliness, which, for most of the disabled, is a harsh fact of life. There will always be something very poignant about the personal ad he posted on his home page: “I am looking for an intelligent, literate woman for companionship and, perhaps, sexual play. (I am, as you see, completely paralyzed, so there will be no walks on the beach.)”
O ’Brien left some fine presents for us. Not the anger, the one that made him write, “God damn this wall I cannot punch / God damn this bat I cannot swing / God damn this eucalyptus leaf I cannot pull down off a tree and hold up to my lover’s nose.”
No, his gift for us was not rage — for that’s something that runs heavy and fast in the blood of all his disabled brethren.
Nor was it something they call “courage.” “Saying a disabled person is courageous,” he once wrote, “is like saying that a black person has natural rhythm.”
O’Brien’s real gift was apparent in an interview he did with Stephen Hawking. As O’Brien was waiting for an audience with the disabled physicist, some ninny from PBS came up and asked if seeing Dr. Hawking gave him hope. He wrote,
This struck me as an awfully stupid question. Hope for what? Could Dr. Hawking change my life, make me walk, get me a lover? I tried to think of a polite way to answer her. I just didn’t want to get sucked into being cast as a Spokesperson for the Disabled in a dreary story headlined “Disabled Inspired by Dr. Hawking.”
I suspect that the thing we should most value O’Brien for, outside of his appealing (and sometimes appalling) honesty, was his chutzpah. I am thinking of the way the interview with Hawking came about. O’Brien set the whole thing up and somehow got his dreadful space-age gurney maneuvered into the meeting hall at UC Berkeley where the physicist was appearing. I can picture it now: Hawking in his little wheelchair, with his motionless face and his typing-talking machine; O’Brien laid out flat on his back on his gurney, his face pressed to the side, his voice barely audible:
O’Brien: Do you ever feel frustration, rage at being disabled?
Hawking: No.
O’Brien: Does your work help you to deal with these feelings?
Hawking: Yes. I have been lucky. I don’t have anything to be angry about.
Pure O’Brien. He wasn’t interested in the stars or in the history of time. He was trying to get the famous Hawking to talk about his feelings — to talk about this astonishing thing that had happened to his body, and what it did to his psyche. For O’Brien and I and all our disabled friends know that there is no one in the world, not even a mental giant like Hawking, who can lose the use of his or her body without having it resonate powerfully in the soul.
O’Brien: Doctor Hawking, what can you say to all the disabled people who are stuck in nursing homes or living with their parents or in some other untenable situation and who feel that their life is over, that they have no future?
As I heard this long question unravel like an ill-mannered ball of yarn [O’Brien wrote later], Hawking continued to look at me and typed his answer into the voice synthesizer. I couldn’t see his right hand, the one he used to type. I waited. All of us waited. Then the silence was cracked by the synthesizer’s crisp, booming voice.
Hawking: It can be very difficult. I know that I was very fortunate. All I can say is that one must do the best one can in the situation in which one finds oneself.
The good doctor left O’Brien in a lurch, didn’t he? Refused to show even a teeny bit of what they call “emotion” or “feeling.” O’Brien blew it, didn’t he?
Maybe. Except that those of us who long ago penetrated that ghastly myth of Disabled Courage Against All Odds know that O’Brien was onto something — something to teach the teacher. Something that Hawking, perhaps, if he is lucky, has by now finally figured out.
That it hurts. And that there doesn’t have to be any shame in that hurt.
If I were to do something silly like try to create an epitaph for Mark O’Brien, I probably would not dwell on his books, or his angry articles about Jack Kevorkian, or his fine baseball stories, or even the 1997 Oscar — that wonderful present for him and director Jessica Yu and their documentary, Breathing Lessons.
I would, rather, choose to engrave on the stone a poem — one he wrote ten years ago, titled, with typical (and delicious) O’Brienesque irony, “Lifestyles of the Blind and Paralyzed”:
The pay is lousy, no vacations or sick leave, and the compliments . . . you’d rather do without them. On the plus side, you’re exempt from military service, get to watch lots of TV and pay half price at the movies. They’re out there, my public, dying to ask me what happened to you, wondering how I pee and using me as proof that God is just and punishes only the wicked.
