by Paul Kahn

When I learn that Stephen Hawking is coming to my part of the world, I decide to try to get an interview with him. He has set himself a very busy schedule, including three Loeb Lectures at Harvard University, seminars with the physics department and a popular science talk at the Wang Theater, a large venue in Boston. So I’m surprised when, after a prolonged exchange of e-mails, Hawking’s graduate assistant informs me that the world’s most famous and respected scientist with a disability has agreed to my request. As the time grows closer for me to keep my appointment with him at Harvard, I find myself both elated and frightened.

My elation seems natural to me. It comes partly from plain old celebrity worship, partly from the chance to encounter greatness, and more than anything from the prospect of finding a big brother in disability, one I can look up to and learn from.

My fear gives me more misgivings. First, I’m afraid of feeling inferior to Hawking. Most of us are taught as children to disavow the seemingly useless emotion of envy, but here I am beset by it. Second, and even more upsetting, his ALS scares me. I too have a progressive neuromuscular disability, so someone like Hawking can embody my worst visions of my future–more complete immobility and more complete dependence on people and machines. Knowing from my own experience the alienating effect of being feared, I feel guilty for doing the same thing to someone else.

Then I realize that my two emotions of elation and fright are related. Together they amount to the sensation of awe. They are a version of the deep-rooted attraction and simultaneous repulsion that people often feel toward someone who has a disability. I hope that my encounter with Hawking can teach me something valuable about living with this duality.

First Glimpse, First Impressions
I first see Hawking in the flesh at his initial Loeb Lecture. The setting is the beautiful Sanders Theatre in Harvard’s old Memorial Hall. It is packed. In fact, all 3,000 tickets to his three lectures had been scooped up 20 minutes after they became available and he has also sold out his talk at the 3,500-seat Wang Theater. I wonder if he would stimulate as much interest if he weren’t disabled. And does he ask himself that question the way I ask myself if the recognition I receive as a writer and therapist is earned or if people are just surprised that I can do anything, given my “tragic” condition?

A member of the physics department makes the introduction and promises that Hawking will appear momentarily “if” the new backstage lift works. Perhaps physicists are as superstitious as the rest of us about machines. The audience applauds vigorously, but there is no sign of Hawking. More applause. Then slowly he rises into view like a deus ex machina. When they see him, the audience applauds even louder and continues without stopping while he rolls down a short ramp and positions himself downstage.

Hawking composes and stores his lectures in advance on his computer and then delivers them with his synthetic voice. Ninety percent of this one, titled “The Shape of Time,” goes over my head, but I get the general drift. The subject is Hawking’s specialty, the origin and structure of the universe. It makes me anxious. I feel tiny. I feel that the ticking of my biological clock, which deafens me, cannot be heard in the vastness of the universe. I reflect that Hawking’s clock is ticking, too. In fact it is gaining speed with the progression of his ALS. I admire him for being able to face his cosmic insignificance.

Maybe looming so large on our little human stage helps him. A practiced performer, Hawking enlivens his lecture with slides and humor. Many of his little jokes seem designed to make people feel comfortable with his disability. For instance, he remarks that Isaac Newton once held the Lucasian Chair in Mathematics that he now holds, but when Newton held the Chair it was not on wheels. I’m a little disappointed by this catering to the audience. I worry too much about other people’s feelings, so I’d prefer Hawking to be big enough to not give a damn. But then I think, if he didn’t, he probably wouldn’t have agreed to see me.

Synthetic Voices
Kahn: When I had my tracheotomy, one of my doctors said “Congratulations on your marriage to the ventilator.” You, too, are married to technology. How do you feel about this intimate connection?

Hawking: For me the most important technology is my computer system. Without it I would be unable to communicate. So I suppose in a sense I am married to it. I am very lucky computers were developed just when I needed them. Ten years earlier I would have been dumb. My wife wouldn’t like to think I was married to technology. She would be jealous.

Hawking’s synthetic voice is capable of varying intonations so it doesn’t sound completely robotic. He has joked that it sounds too American and that he’s waiting for a British version to be developed. To me it most resembles someone trying to communicate clearly through a bad cold in the nose.

It’s a very slow way to communicate. An answer of three short sentences takes Hawking about 10 minutes to compose. A one-hour lecture costs him 40 hours of work. And although he is clearly very adept at using his system, there are occasional glitches. For instance, when he answers my question the voice actually says, “I would be repeated in my chair, unable to com- com- com- communicate.”

While he is clicking away with his thumb, selecting words from the computer screen mounted on a bracket attached to his wheelchair, I fall into an almost meditative state. I have a chance to observe him closely. He is thin. Dressed in black slacks, blue open-necked shirt and gray sports jacket, he leans back in his wheelchair, managing to appear both awkward and comfortable at the same time. His head is supported by a headrest lined with black sheepskin. The flaccidity of his muscles gives his face a deceptively dreamy look. Longish gray hair is combed from the side, and some whispy strands fall over the dome of his forehead, within which resides the mystery of intelligence. As the steady click-click-clicking continues, I relax even more and ponder what it could be like to use this form of communication.

On the plus side, this painstaking process must encourage him in the virtues of patience and concision. And of course, being able to talk at all is good. I remember not having my voice for several weeks after my tracheotomy. Being unable to make my needs known terrified me, and my inability to express my feelings was very isolating.

Hawking’s process takes so long people can easily walk away, ignore him or talk only to his nurse or assistant. He has to have experienced these frustrations, these indignities.

Those of us with a natural voice use words wastefully. We chatter and fill the silence with inanities. Sometimes we lie and delude ourselves. But we can in a second connect to each other. “I love the way the twilight hits your face just now.” I wonder how well Hawking’s synthesizer conveys his soul. The issue is not just speed. It’s also sound. His synthetic voice doesn’t whisper. It doesn’t caress or for that matter yell urgently. For instance, when he says to his nurse, “Please move my foot,” I can’t tell how he means it–as a command or a request.

While I intuit loss, I also sense power in Hawking’s way of communicating. He definitely controls the pace of our conversation. And more significantly, his long silences and absence of chit-chat give him an inscrutable aura. I feel insecure, unsure if I am interesting him or boring him. This is the power of silence.

Cosmic Inconvenience

Kahn: How does your disability affect your view of yourself, your life?

Hawking: I guess we’re all pretty disabled on the cosmic scale. What difference is a few muscles more or less? Disability does not really affect my consciousness. I see it as an inconvenience like color blindness.

Because I have read similar statements Hawking has made about his disability, I am not surprised when he characterizes his almost complete immobility and physical dependence as no more than an inconvenience. Still I find it unnerving.

It’s too politically correct. It’s what we say to people without disabilities: We’re really just like you. We say it because we want it to be true. We don’t want to be alien. We’d gladly shed our griefs and burdens. And we say it because we want to charge nondisabled people with the responsibility of changing the environment. Give us access, give us personal care services, treat us without discrimination, we say, and we won’t really be disabled anymore.

This is all true, yet at the same time it rings false. In my heart I know I am different. I can’t get out of bed by myself. I can’t breathe by myself. Because of my disability, I have no shield against the terrifying knowledge that misfortune is arbitrary, that the body is a frail and decaying thing, that most people are selfish and untrustworthy. This knowledge makes me different. What’s true for me may be true for everyone, disabled and ablebodied alike, but the ablebodied, if they’re lucky, don’t know it yet. I feel that the task of my life is to make something positive out of my difference, rather than deny it. I must live more intensely. I must speak more truthfully. I must not waste time.

How then do I respond to Hawking’s claim? With disbelief. He must be in denial. While we are talking, a tall attractive woman breezes in. She kisses him, squeezes his arm and announces that she is his better half, Elaine. He smiles with pleasure at her. The moment is tender, touching. They obviously love each other. How can he not long to embrace her and dance the sexual dance to its wildest rhythms? How can his inability be only an inconvenience?

With envy. Perhaps fame and socialized medicine really do protect him from the hardships we ordinary Americans with disabilities endure. He has 24-hour-a-day nursing care paid for, his Web site says, by grants and foundations. Hawking has a graduate assistant, provided by his employer, Cambridge University, who helps him prepare his lectures, make his travel arrangements and cope in other ways with his rich and complicated life. In the United States, many of us don’t ever have the opportunity to work because if we did we’d lose our vital health care benefits.

Ultimately I respond to Hawking’s attitude toward his disability with acceptance. A while back I had the opportunity to interview Christopher Reeve. He represents the opposite pole of consciousness about disability–the conviction that the only way to have a good life is to be cured. I disliked this attitude and felt uncomfortable with the interview until a friend pointed out, “We don’t get to choose our poster boys.” We take what we can from each of them. In the end, they represent only themselves, not me or you. Also, as a psychotherapist, I’ve learned to respect people’s varied coping mechanisms. Whatever works, I applaud. Hawking’s sure seems to work for him.

Physics and Metaphysics

Kahn: You have written about the possibility of understanding the universe so well that one could “know the mind of God.” Do you believe in a divine being?

Hawking: I was using the word “God” in the sense of nature. That last line of my book was meant as a metaphor. If we knew how and when the universe existed, we would indeed know nature’s purpose.

Kahn: What do you mean by “purpose?” A guiding intelligence? A moral order?

Hawking: I admit it is difficult to give an operational meaning to the purpose of the universe. In the philosophy I use, it has no meaning. Yet I keep wondering, why does the universe exist? It is either a weakness of positivism or a weakness of my understanding.

Hawking says he subscribes to the philosophy of positivism, which stipulates that the only reality is what can be empirically proven. Yet he deals regularly with abstruse concepts like infinity and imaginary time that are beyond our perceptions. He wonders why the universe exists but has no answers.

At first, I am disappointed. I was looking for wisdom, someone to teach me how to live. Are meaning and value to be discovered, embedded in some grand scheme, or simply invented ad hoc by each of us? Is there a spiritual reality that exists in concert with physical reality? If so, how does my individual consciousness connect with it? Hawking seems to have nothing profound to say about these questions. Perhaps he is not very interested in them.

Then I realize that Hawking can teach me best by example. He has found meaning and value in his life, despite a disability that has driven many to despair and some to the ministrations of Dr. Kevorkian. His mind touches other minds around the world and his theories shape the sense we share of our place in the universe. Whether he likes it or not he is an icon of human potential. I think he likes it. Why else would he allow a movie to be made about him? Why else would he appear as a character on “The Simpsons”? For heaven’s sake, why else would he have his own Web site? This cultivation and enjoyment of his celebrity is also a good lesson for my puritanical nature. In each of us, our clocks are ticking relentlessly. Each of us will soon disappear into our own black hole. Like Hawking we should make the most of the time we have.

I don’t know nearly enough about physics to be able to say if Hawking is a genius. But I do know he is a star. I hope he continues to illuminate our world for a long time to come.