Bad Animals, page 20
At the gym recently, I ran into a friend who began to tell me about his visiting grandchild, a five-year-old boy, for whom he’d downloaded some games on his iPod. The child’s grandmother objected. “But he loves it,” my friend bragged. “Every time he sees me, he begs me for more. It’s not so educational, I guess, but it’s a good sign, right? At least it means he’s normal.” My friend clearly didn’t realize what he was saying or to whom he was saying it. I understood immediately he hadn’t meant anything by it, so I smiled weakly and went back to exercising. Every so often, though, he would glance at me from the stationary bicycle he was working out on. A few minutes later, he came up and apologized. “I said something terribly insensitive before and I feel awful....” I interrupted him, told him not to worry about it, that I hadn’t even noticed, which we both knew, by then, wasn’t true. But I felt worse for him than for myself. I realized he’d spent the last ten minutes beating himself up. Besides, I appreciated his apology. Not everyone would have realized what they had said or feel obliged to try, however futilely, to take it back. Nor should they. After all, normal was still a normal word to him.
But now, for me, all these words, labels, come out of my mouth tentatively, as if they should have invisible quotes attached to them, like the string on a yo-yo, so you can pull them back. With autism, there is the added issue of how to use the word itself. Do I refer to Jonah as autistic or do I make the effort each time to say he has autism? Do I say it that way until it becomes second nature to me? Have I figured it out yet? Is autism something he has or something he is?
Then there’s the R-word to consider. Still routinely used as an insult in movies or by comics on cable TV, for example, it’s also on its way to becoming taboo. Even if you have, like me, always subscribed to the theory that sticks and stones will, indeed, break your bones but words are not worth worrying about. The smallest kid in my class, growing up, I learned to live with being called shrimpy pipsqueak, midget, twerp. But retard, retarded, sting now whenever I hear them, no matter how they’re intended. There was a time, of course, when the R-word was an improvement, when it was intended to replace more hurtful, less sensitive labels like moron, idiot, imbecile. Even Clara Claiborne Park, writing about her daughter in The Siege in the mid-sixties, matter-of-factly uses the word defective for her own child. Still, it was inevitable for retarded to become ugly the way words do—because of how they are invested with our worst prejudices and fears. Every time Jonah was evaluated and assessed we were given the assurance he was not mentally retarded, definitely not. He had a developmental delay, we were told. We were intended to cling to this statement of so-called fact, of objective, diagnostic observation, and so we did, gladly. We didn’t think or, later on, allow ourselves to think about what the word retardation means, what you’d learn about it if you just looked it up in the dictionary, or if you just thought about it for a moment.
UNTIL RAIN MAN, Hollywood shied away from stories about disabilities, intellectual and otherwise, for obvious reasons. How do you come up with a happy or at least satisfying ending? The Miracle Worker, the 1962 Hollywood version of the Helen Keller story, was an exception. But then it has, despite the heroine’s multiple disabilities, a built-in uplifting conclusion. By the end of the movie, Helen Keller, played overenthusiastically by child actress Patty Duke, still can’t see or hear or talk, but she can communicate. In fact, the movie ends with her communicating like crazy. She has hope, and, more to the point, we have reason to hope for her. And we, the audience, end up feeling the only way we are permitted to—profoundly satisfied. The kid snaps out of it, after all.
A Child Is Waiting, which came out a year after The Miracle Worker, is a braver and more compelling account of a similar story. With Stanley Kramer as the producer and Abby Mann the screenwriter (both worked on Judgment at Nuremberg, the venerable four-hour docudrama about the Holocaust), it had a lot going for it. Kramer also went outside the Hollywood box and chose John Cassavetes as his director. At the time, Cassavetes, a winning young actor, was also making a reputation as an avant-garde filmmaker. Together, Kramer, Mann, and Cassavetes hatched a big, ambitious plan to do something unprecedented—make a mainstream movie about mental retardation. There was certainly no imaginable upside to taking on this subject in the realistic, unsentimental manner they intended. That the movie was made at all, and by a big studio like MGM, with big-name movie stars Burt Lancaster and Judy Garland, was a testament to the good intentions of everyone involved. Cassavetes, in particular, was determined to push the envelope, to make sure the movie was as authentic and uncompromising as possible. This was just his third film and his first chance at a mainstream project with big-name leads. Even so, all the child actors he used, with the exception of the title character, were residents of a California institution for the mentally retarded. They weren’t just extras in the story either; many had featured parts. “I realized truth is important,” Cassavetes explained years later. “I needed to know that if I made a film about a sensitive subject like mental retardation, the people I made the film about would know I had done it to the best of my ability, with no copping out.”
When the movie did come out, Brendan Gill, the film critic for The New Yorker, was dismissive of its casting choices. He summed up his experience watching A Child Is Waiting this way: “It is almost unbearable to be made to observe and admire the delicacy of the acting skill of Mr. Lancaster and Miss Garland as they move—the charming, the successful, the gifted ones—among the host of pitiful children. Despite the purity of their motives, as actors they have no business being there; simply as moviegoers, we have no business watching them.”
In the end, A Child Is Waiting was admired but not especially successful. Or, as Gill bluntly put it, “We have no business watching them.” It would be easy now to say that the failure of A Child Is Waiting was a sign of the times—that no one would write a review as appallingly offensive and cruel as Gill’s any more. No one would use that phrase “the host of pitiful children” without losing their job and deserving to. No one would dare call attention to that gap—the one between “the charming, the successful, the gifted” and their opposites. But even so, Gill’s reaction remains disturbingly and undeniably candid. The catch-22 for anyone telling this kind of story honestly is inescapable: people don’t want to know about it. They never have and never will.
A few years ago I started looking for a copy of A Child Is Waiting. It had been years since it had been on TV and it wasn’t easy to find in video stores or libraries, so I ended up watching it in segments on YouTube. I wanted to see it because I remembered it from decades ago and because it occurred to me, not long after Jonah was diagnosed, that the title character must have autism. That would likely make his portrayal the first feature film depiction of the disorder, which it is, even though the word autism is never used. Instead, the title character is described as “defective.” But his symptoms—his solitude, his blank stare, his difficulty communicating, conversing, his tantrums, his underestimated intelligence—clearly place him on the autism spectrum.
Watching the movie proved to be a bad idea, a fact I realized once I began shouting at my computer screen. In particular, there’s the scene in which the no-nonsense psychologist who runs the institution (played by Lancaster) and his staff are recovering from a regular Wednesday afternoon visiting day Lancaster has been besieged by a variety of hapless and clueless parents, who are either undone by or in denial about their children’s potential. They are portrayed, in other words, as monumental pains in the neck. Some miss their kids or feel guilty about not missing them. Others would secretly, sometimes not so secretly, like them to disappear. They all feel helpless and, as a result, prevent Lancaster from doing his job, which is to treat these children with a kind of tough but respectful love. Fair enough. But Lancaster’s paternalistic tone leaves no room for argument or ambiguity. He views all the parents who pester him with their foolish questions or requests—if my child could just learn his catechism; if he could just speak—with a transparent combination of contempt and pity. Back in his office, with visiting day finally over, he comments to his secretary, “Sometimes I think we should be treating the parents and not the children.” Then he shakes his head regretfully and says, “What a pageant! What a pageant!”
What a fucker! That’s what I was thinking. Fuck you and Stanley Kramer and Abby Mann and John Cassavetes. If you’re all so smart, whose idea was it to make visiting day Wednesday afternoon?
This is an insignificant detail, I know, one that probably nobody ever notices, let alone comments on. But as I watched A Child Is Waiting, I couldn’t get it out of my head. Wednesday afternoon. Talk about retarded. How are ordinary working parents expected to get to the place and have any time to spend with their child? They’ve probably already been hectored into institutionalizing their kids; now they’re supposed to quit their jobs to visit them, take their other kids out of school. Why isn’t visiting day on a Saturday or Sunday? The whole system is nuts. Why doesn’t anyone complain?
LAST NIGHT, I ALSO expected to be shouting, before long, at Rain Man, and, no doubt, waking my family. The movie has its infuriating moments. The director Barry Levinson’s depiction of autism hasn’t done anyone who has to cope with the disorder on a day-to-day basis any favours. Made before there was such a notion as a spectrum, the movie puts all the emphasis on the extreme end of the disorder. Hoffman’s character turns out to be a whiz with numbers and ends up winning Cruise a small fortune by counting cards at blackjack on a trip to a Las Vegas casino. Ever since Rain Man there has been no shortage of stories on television programs like 60 Minutes about true-life savants: piano-playing geniuses and math wizards. A couple of years ago I saw a local news story about a teenage boy with autism who finally got his chance to play for the high school basketball team and astonished everyone by demonstrating a remarkable knack for hitting three-point shots. He’d been a kind of team mascot before that appearance. Nobody even thought he knew how to play. Rumour has it that this story will be turned into a feature film.
Daniel Tammet, a British man with Asperger’s, was featured on 60 Minutes. In the press release for his memoir Born on a Blue Day, Tammet is described as “a real-life Rain Man.” He has an extraordinary facility with numbers; he’s also able to become fluent in a new language in a matter of days. His memoir concludes with his successful debut on the Late Show with David Letterman. “This experience showed me more than any other,” Tammet says, “that I really was now able to make my way in the world.... I felt elated by the thought that all my efforts had not been in vain, but had taken me to a point beyond my wildest dreams.”
Almost twenty-five years after Rain Man, the savant angle, with the adjective idiot usually dropped, continues to influence the public perception of autism. And for the same old reason: the message is ultimately uplifting. What the audience goes away with is the understanding that people with autism may not always be able to function in society, but they have been given some unique gift as a kind of counterbalance—compensation for all the ordinary, unspectacular things they’re incapable of doing. This gift can rarely be accounted for except, perhaps, as an example of God or the human brain, whichever you prefer, working yet again in their own mysterious ways, making lemonade out of lemons. At a dinner party one night, the new boyfriend of an old friend pressed us to reveal what Jonah’s talent was. He assumed there had to be something. He also assumed we were keeping whatever it was a secret until we could book Jonah on a late-night talk show or sign a major motion picture deal. “What does he do?” he kept asking. When we finally convinced him that our son was not secretly a genius, the inquiring man was disappointed but reassuring. He suggested we just hadn’t found Jonah’s special talent yet, whatever it might be.
So, yes, Rain Man plays fast and loose with the everyday realities of autism, and, yes, that hasn’t always been helpful, but it’s also a surprisingly endearing movie that succeeds where A Child Is Waiting, with its cinéma-vérite good intentions, fails so miserably Rain Man stumbles into an important truth if not about autism then about what it’s like to find yourself suddenly living in the world of autism. Scene to scene, Rain Man is also a comedy, an extended Abbott and Costello routine. (Hoffman’s character recites the “Who’s on First?” bit whenever he’s stressed or whenever there is a change in his routine.) Watching the movie this time around, I was struck by how closely dealing with Jonah mirrors the comical, absurd, confusing back and forth between the person (Lou Costello) being drawn unwillingly into a looping, loopy conversation about a baseball line-up and the person (Bud Abbott) already comfortably immersed in it. “Who’s on first?” Costello asks repeatedly. “Naturally,” Abbott answers repeatedly. Meanwhile, the frustration builds, and, after a while, you have a simple choice if you’re a participant or an observer: you can laugh or scream.
The other takeaway from Rain Man comes late in the movie when Cruise and the doctor responsible for Hoffman confront each other. Their meeting is being refereed by another psychiatrist, who is assessing what is, in effect, a custody battle. Cruise has, without meaning or wanting to, taken on the role of a parent or guardian to Raymond. Like a parent, he tends to be defensive and emotional. He argues that he has had more success making a human connection with Hoffman in six days than the experts have in thirty years. The first time I saw Rain Man, I probably viewed this scene the way the filmmakers intended it to be viewed—as a noble but quixotic gesture by Cruise, mainly constructed out of a love for his new-found sibling. Now, I know different. I know Cruise is simply right. On that six-day road trip, Hoffman learns to dance, kisses a woman, improves his taste in clothes, and becomes a part of a family. Insofar as it’s possible, he is on his way to being integrated into the neurotypical world. You don’t know him the way I do, Cruise protests to the patronizing psychiatrist, an updated, slightly more sensitive version of the Burt Lancaster know-it-all character. You haven’t been with him twenty-four hours a day, Cruise goes on. Of course, this is what every parent of a child with autism thinks every time they’re told what to do by people who haven’t a clue—by the experts without expertise. If Rain Man didn’t exactly set out to make this point, if that’s just me talking—projecting, sweetheart, as Cynthia might say—the movie is clear on the fact that the hero of the story is not Hoffman, it’s Cruise. Cruise changes. He’s the schmuck who stops behaving like a schmuck, the one who learns something about his brother and himself. He gives the movie its redemptive Hollywood ending. He snaps out of it.
FOURTEEN
Zebras and Zebus
Jonah was born on Christmas Eve in Montreal’s Jewish General Hospital. That wasn’t how we’d planned it. Cynthia had had a midwife rather than an obstetrician for her entire pregnancy, but once she was a week past her due date, we checked into a hospital to be on the safe side. Secretly, I was relieved. Our sessions with the midwife had been a little too new-age-friendly for me. In the final days of the pregnancy, there was a lot of talk about how Cynthia might want to position herself during her contractions—whether she should be standing, crouching, walking. Walking? Lying down, evidently, was old-school, impractical, and vaguely misogynistic. There were birthing chairs, too, or we could opt for an ordinary stool. Like a barstool? How about a bathtub? How about it? We could always try that, complete with whirlpool attachments, our midwife went on. And, she added to me, if I wanted to I could be in the bathtub with Cynthia. No one ever suggested that, sweetheart. Most men also want to catch the baby, I was informed, but you have to be careful. That placenta can be slippery. Catch? You mean like a fastball?
As it turned out, no bathing or game-saving catches were required. Jonah was already nine days late by the time we arrived at the hospital and was either unprepared or unwilling to cooperate. He was then, as he remains, a hard kid to read. Cynthia was induced, but the procedure had little or no effect. Jonah simply refused to budge. Shades of Mr. Potato Head. So the doctors ordered an emergency C-section and Jonah’s entrance into the world was quick, startling, and not really his idea.
Because Cynthia had a C-section, our stay in the hospital was extended from a day and a half, maximum, to four days, minimum: hospital policy. After the four days, we were informed that we’d be staying a day or two longer. Jonah had jaundice, a common problem in newborns, but one the doctors wanted to keep an eye on. Two days later, as we were packing, Dr. K., the chief of obstetrics, entered our room and explained that there was a complication, that Jonah’s jaundice wasn’t resolving itself as quickly as he would have liked. He explained slowly, reassuringly what was going to happen next. Jonah would require phototherapy; basically he would be placed under a set of lamps in order to lower his bilirubin count. I still couldn’t tell you what bilirubin is, but, evidently, when it’s elevated, it isn’t good.
Cynthia was squeezing my hand. She’d already spent most of the morning answering leading questions about her emotional state from a succession of OB/GYN residents and interns. A lactation nurse had apparently tipped off the rest of the staff when she spotted signs of what she presumed to be post-partum depression. From then on, no one bothered asking Cynthia why she might be feeling down. They assumed they knew. The answer was right there on her chart.
“We want to go home,” I said, as yet another resident dropped off pamphlets explaining how post-partum depression was nothing to be ashamed of. “You won’t let us go home,” I added as the young woman smiled at me and exited. “Seriously,” I said, sinking to my knees and pleading with the slowly closing door, “can’t you just let us out of here?”
“My stitches. Don’t make me laugh,” Cynthia said.
