Born Twice (Vintage International) (3 page)

For years I hated them all. They hide behind a metaphor that’s been worn thin through overuse, drained of all meaning, even with regard to the fantastic. It’s as if they need to protect themselves from what they see as irrational demands, when actually they’re calls for help from people who crave hope, people who’d like to escape into the future in order to liberate themselves from the torment of the present. Instead, these doctors choose to fall back on a phrase they probably first heard in medical school. (How they treasure the fatuities of the great!) Meanwhile, the alibi of professional ethics masks any eventual discontinuity in what they say. Not that the patients or their relatives actually believe in the crystal ball. They don’t see it as the key to the future. For them it reflects their need to avoid painful self-analysis in order to be confronted with the details of the difficulties that lie ahead. Those doctors who are both competent and compassionate enough to address these issues have never regretted doing so.

I remember the doctor who, when Paolo was three months old, told us the truth: or what he really thought. He reflected at length before speaking. The room was fraught with tension. He didn’t mention a crystal ball. A far greater expert in questions both of medicine and of humanity than so many of his colleagues, he looked at us and said gently, “I cannot tell you what your son will be like when he grows up. I can only make a few reasonable hypotheses.

“The most optimistic one: The cerebral damage caused by the forceps and a lack of oxygen at birth will be assimilated, leaving no subsequent trace. His condition could be marginal. This is not the most probable hypothesis.

“The median hypothesis: The cerebral lesions, though not deep, have damaged his language and motor skills. The child will begin speaking late; at age three he’ll know a hundred words where another child might know a thousand. He won’t be able to walk properly. His fine motor skills will be imperfect. His intelligence will be intact, yet he will seem immature because of his incomplete experience.

“The third and most negative hypothesis: The encephalogram doesn’t reveal the degree of the lesions. It’s still too early. The effects on his mobility and intelligence will be greater than suspected. In my opinion, this is the least probable hypothesis.

“However, I might be wrong. You will have to learn to live from day to day. Try not to think too much about the future. It will be a difficult experience, yet you will not regret it. You will be the better for it.

“These children are born twice. They have to learn to get by in a world that their first birth made difficult for them. Their second birth depends on you, on what you can give them. Because they are born twice, their journey through life is a far more agonizing one than most. Yet ultimately their rebirth will be yours too. This, at least, has been my experience. I have no more to tell you.”

Thirty years later, I want to say thank you.

The First Appointment

The physiotherapist greets us in a dark, dismal, and uncomfortably small waiting room. Some houses, like some people, reveal the worst of themselves at the threshold and only later manage to correct that initial impression. As Oscar Wilde said, only the superficial don’t trust their first impressions.

Taking turns holding the baby, we manage to remove our coats. Then, with our backs pressed against the wall, we open a dark closet and hang them up. We move into the rehabilitation room. It has hardwood floors, and its walls are lined with cushioned bumpers. There’s a square gymnastics mat in the center. The gray foggy light of late afternoon filters through the window.

She motions for us to sit down on a wicker sofa, while she sinks down onto an oversized pillow on the floor. You can tell that’s where she feels most comfortable.

She’d forgotten to tell us her fee over the telephone, so she promptly informs us. It’s remarkably high. Slightly embarrassed, she observes our reactions, which we manage to hide with ease for once.

“Is that all right?” she asks.

“Yes,” I reply.

There’s something vaguely unpleasant about her manner. She seems nervous and awkward, almost foreign, simultaneously hesitant and aggressive. I realize this now, years later. But at the time, fearing the uncertainty of the results of the medical tests and overanxious to be reassured, I was primarily concerned with not upsetting the mood of the oracle, even if I did intuit some sense of her limitations. So much needs to be said—and in such a wide range of tenses! It takes years to answer things adequately, even ideally. And by then the interlocutor might have died or disappeared or simply have forgotten the question. Very few people actually have those lightning reactions that correspond with future memories. Nor can we who are disoriented with doubt or stupefied with surprise ever hope to imitate them.

The physiotherapist asks us to tell her clearly about Paolo’s condition. I think she’s afraid I’ll give her too many details or be long-winded, because as soon as I start talking, she urges me on. “Yes, I see—yes,” she says, negating all my efforts at dialogue. So instead I simplify and abbreviate and condense things. I conclude, in exasperation, by gesturing to Franca to pass her the baby.

The woman gathers him into her arms with maternal rapaciousness, as if it were a salvation. She lays him down on his back on the mat, extends his arms out to his sides, caresses his small hands, and tickles the soles of his feet. In time, I will come to see these actions repeated by many specialists, but now they seem knowing, graceful, expert. She asks us which doctor referred us to her. None of them, I tell her. What do you mean? she asks. A colleague of mine had heard of her, I say. What did the neurologist tell you? We don’t have a neurologist; Paolo was discharged from the hospital a month after he was born. The doctors said his problems would eventually go away.

“Are they crazy?” she says, getting up onto her knees.

“No, not at all,” Franca replies, turning pale. “We came to you for confirmation.”

The physiotherapist looks at her in amazement.

“Just to be sure,” Franca repeats, growing alarmed.

“But this child has brain damage!” she exclaims. “He has dystonic spastic quadriparesis! You didn’t mention that!”

My legs go weak.

“This is not a passing phase,” she continues. “We have to begin immediately!”

“Begin what?” I ask, wide-eyed.

“Physiotherapy! Several hours a day! You’ll have to work with him constantly!” She turns to Franca, whose total silence betrays her panic. “We can’t waste any more time!”

“What kind of problems will he have?” I ask apprehensively.

“Too many to list,” she replies. “Besides, it depends on the evolution of his symptoms.”

“For example?”

“The way he walks,” she says, “might be irregular.”

“How?”

“Like this,” she replies, standing up. She’s barefoot. She begins to walk slowly, like an overweight ballerina, swaying drunkenly from side to side until she loses her balance and falls to the floor.

“Understand?”

“Yes,” I whisper.

It’s a horrible image. I look at Franca. She has covered her mouth with her hand in shock.

“You’re sure about that,” I say in a monotone, uncertain if I’m questioning or confirming what she has just shown us.

“No, I’m not sure,” she says, getting to her feet again and starting to walk with erratic movements, as if she were crossing a bed of white-hot coals. “His speech might be affected too, as well as his manual skills.”

“What about his intelligence?” I ask, looking downward.

“No, I don’t think so,” she says. “There will be other, different problems.”

I lean back. Franca dabs at her eyes with her handkerchief.

“Really? Nobody told you?” she asks.

“Someone in the clinic did, at the beginning,” I say, “but they never mentioned it again.”

“Amazing,” she says, turning away, stunned.

I look over at Franca in silence.

On our way downstairs we carefully analyze the various aspects of the meeting, beginning with a list of her faults. The final result is both discomforting and reassuring.

“When did she say we should call her back?” I ask Franca.

“In two weeks.”

“Will you?”

“No,” she says, sure of our shared reaction. “She’s far too catastrophic. No one ever mentioned these things to us. We can’t trust her. We have to be able to trust the person who’s treating our child.”

“I agree. Besides, she doesn’t have much experience. She’s just starting out.”

“Right.”

Now, when I watch Paolo stagger off ahead of me, I recall seeing her stagger across the mat in that gray room at sunset, her shadow projected on the wall. She was the only person whose vision of the future resembled reality. Maybe that’s why we chose to reject her.

What Is Normal?

What is normal? Nothing. Who is normal? No one.

When we’re hurt by diversity, our first reaction is to deny its existence, not to accept it. We do so by denying normality. We say it doesn’t exist. The spoken words suddenly seem distant, smug, sarcastic. When talking about normality, we resort to written language: “Normal people, quote unquote” or “so-called normal people.”

Subjected to rigorous analysis no less frequently than diversity, normality reveals its inadequacies, fissures, deficiencies, lapses, shortcomings, and anomalies. Everything becomes an exception. Our need for the norm, if shooed away from the door, returns to menace us at the window. And it returns doubly dangerous, like a virus that has outstripped the medicines supposed to kill it. It’s not by denying the existence of difference that we can fight it, but by modifying our image of the norm.

When Einstein was asked for passport information and chose to reply by saying “member of the human race,” he wasn’t ignoring our differences. He was dismissing them in a vaster manner, accepting and transcending them.

This is the landscape that needs to extend before us, both for those who make differentiation into discrimination and for those who try to avoid discrimination by entirely denying the existence of difference.

The Art Institute

For several years I taught at the Art Institute. I started working there when I was twenty-eight—it was my first position in a public high school—and I had never met a disabled person. Nowadays, you see a lot of them. I’m not sure if it’s because I notice them more or because their number has increased. Probably a combination of both.

There was a girl in one of my classes who always sat in the front row. She had long blond hair, broad shoulders, and a round face; her body exuded strength and agility. She reminded me of an Australian swimmer who has just finished practice. She had bright eyes and a serene expression. She’d follow my lesson entranced, virtually hypnotized.

The first time I call her up to my desk to quiz her, she stands erect and composed, her hands behind her back. I can’t hear what she’s saying.

“Can you speak up, please?” I ask.

She bites her lip and shakes her head, as if I have asked her to do something impossible.

I look at her in amazement. She turns toward the class for help. Some of the students snicker. Then she turns back to me and starts to whisper. I beckon her closer, cupping my ear, making the sign that deaf people use. (I’ll leave the more correct term of “hearing impaired” to those who are not familiar with the handicap.) She leans over in embarrassment and whispers, “I’m sorry. I can’t speak any louder.”

“Don’t worry,” I say boldly, “you’re doing fine.”

I’m not much older than she. I feel accessible, generous, liberal, correct. I’m a brilliant young teacher, living up to expectations. The students chuckle among themselves. Some of them even double over with laughter; others just sit there gaping and grinning.

I ask the girl questions that require short answers: names, dates, titles, places, basic notions (not an insignificant exam by any standard, as will become apparent when they’re eventually abolished). For her part, she responds perfectly. And she’s genuinely surprised by the transformation in my method.

I dismiss her with a smile. Beads of perspiration have gathered on my forehead. She was well prepared and deserves a high grade, which I proceed to write down in the register with a flourish so it is evident to her. I have become a minor hero of modern didactic methods; I am both helpful and detached. Even the rest of the class seems to think so, having passed from laughter to smiles of appreciation, no small feat indeed.

As she is sitting down again, tired and happy, the student next to her tells me she has an easier time with the more technical subjects, where she has to speak less. It’s harder with Professor Cornali, apparently, who teaches Art History. This girl speaks freely and candidly, while the blond girl and the rest of the class nod in agreement; she has become my informant, a kind of representative or envoy.

“Why is it harder with Professor Cornali?” I ask.

“He says he’s deaf,” she replies, smiling bitterly.

Her classmates mumble their skepticism.

“His hearing is fine,” she adds. “He does it to be hard on her.”

The truth probably lies somewhere in the middle, I think. Professor Cornali may be a little deaf and the girl might make things hard for him, which he counteracts by being hard on her.