Once, at a press conference, someone asked Eleanor Roosevelt if polio had affected her husband's mind. There was a long pause, and 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, who died of complications from bronchitis on July 4 at age 49, 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 reporter, a baseball fan, a publisher, a journalist, a social critic and a poet.
He did all these things while living alone in an apartment in Berkeley, Calif. Not content with that, he went about town on a Stanford University-built electric gurney. That gurney, with Mark lying there on his back, enclosed in a plastic bubble, was forever and a day on the streets, O'Brien guiding the machine with his foot. He would zoom down the sidewalk, run off the curb and the whole thing would topple over -- dumping him out on the pavement. Somehow he would dragoon people around him into picking him up and sticking him back on his contraption, inside the cocoon, and then he would roar off again, ramming into walls and people, oblivious to the strange sight he was making in a city so used to strange sights.
That Mark 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 age 6 -- 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 the 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 the first 20 years of his life and then stuck him away in a nursing home. He put up with that for a while, then one day he said, "I'm going to college." He did, too -- moved out on his own, at age 30, got his degree (in English, at the University of California, Berkeley) in five years, then started graduate school.
They should have applauded him -- right? Nonsense. At one point, Social Security administrators tried to take away his benefits because he wasn't keeping "appropriate records" pertaining to his attendants. They made him go through an extended hearing to keep his $400 a month. Your tax dollars at work.
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O'Brien's special gift, I suspect, was his heart-stopping honesty. He wrote an article for a book of mine about sex and disability ("CripZen: A Manual for Survival"), 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 36, had his first taste of love, with a sex surrogate, he wrote a long article about it that was published in several places, including the Sun magazine of North Carolina. The paragraph about looking at himself in the mirror always struck me as being 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 bittersweet about the 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.")
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O'Brien left some fine presents for us. Not the anger, which 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 me, "is like saying that a black person has natural rhythm."
Once O'Brien did an interview with physicist Stephen Hawking. As he was waiting, some ninny from PBS came up and asked Mark if seeing 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 Mark for, outside of his appealing (and sometime appalling) honesty, was his chutzpah. I am thinking about the way the interview with Hawking came about. Mark 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 almost picture it now. Hawking in his little chair, 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 time, or even in the history of time. He was trying to get 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 body without having it resonate powerfully in the soul.
O'Brien: Dr. 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?
O'Brien later wrote, "As I heard this long question unravel like an ill-mannered ball of yarn, 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 voice 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 him in the 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 for the fact that those of us who have 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 (perhaps) Hawking, if he is lucky, has, by now, finally figured out: It hurts. And there doesn't have to be any shame in that hurt.
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If we were to do something silly like try to create an epitaph for Mark, 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 Jessica Yu, who directed the documentary film "Breathing Lessons: The Life and Work of Mark O'Brien."
I would, rather, choose to engrave, on the stone, a poem -- one he wrote 10 years ago, titled, with typical (and delicious) O'Brien-esque 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 proofthat God is just
and punishes only the wicked.
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