Stereotypes, Stigma, and Identity
It was a chance reunion. Fifteen years earlier, Neal Gillespie and David Tilbury had shared a room at St. Joseph’s Hospital, in the Baltimore suburb of Towson, Maryland. Both of them had been scheduled for surgery at the hands of Dr. Steven Kopits, an orthopedist who was such a legend within the dwarf community that the Washington Post once called him “The Little People’s God.” The nuns had asked Gillespie, then in his early thirties, to look out for Tilbury, a frightened teenager. “He was apprehensive about being put in with this old guy, and I was apprehensive about being in with this kid,” Gillespie recalled. He compared their relationship to that of the Odd Couple, describing Tilbury as someone who’d throw his clothes all over the room and make fun of Gillespie for brushing his teeth regularly. But they formed a bond that they renewed instantly on this mid-August afternoon at Johns Hopkins Hospital, in Baltimore.
“My nickname for him was ‘Pond Scum,’” a clearly delighted Gillespie told me, making sure that Tilbury, an aspiring lawyer, had heard him. For his part, Tilbury, upon learning that his old mentor was the mayor of his hometown of Hugoton, Kansas (population 3,700), launched into a series of jibes about what kind of city would vote for a guy like him.
But joking aside, they were both at Johns Hopkins that day on serious business. Kopits had died several months earlier following a long battle with brain cancer. They had come to see Dr. Michael Ain, an orthopedist who, at just forty-one years of age, may already have succeeded Kopits as the best-known dwarfism specialist in the country. And — very much unlike the tall, courtly Kopits — Ain is himself an achondroplastic dwarf, a four-foot-three surgeon who keeps up with his busy schedule at the speed of someone whose legs are twice as long as his and who plies his craft while standing atop one of several two-step stools he keeps stashed in Hopkins’s operating rooms.
Ain is blunt, brash, and funny, a muscular man with a buzz cut and a firm handshake who was both a second baseman and a wrestler in his high-school (Phillips Andover Academy) and college (Brown University) days. Some people find him brusque and intimidating, especially former patients of Kopits, whose personal concern and solicitude were legendary. “Dr. Ain is technically very sound, but he has no bedside manner,” Tilbury told me. Yet in watching Ain for a day and a half — an afternoon seeing kids at the Little People of America conference in Salt Lake City (as a member of LPA’s medical-advisory board, he does free clinics at the national conference every year), and then for a twelve-hour-plus day of surgery and patient consultations at Hopkins — a more well-rounded picture emerged. Ain can be tough and in-your-face, and his humor might come off as grating for someone facing surgery. (At one point he explained to Gillespie why he doesn’t like seeing patients in clinic. “I gotta talk. I gotta listen to your complaint,” he quipped, all Long Island wise-ass shtick. “Hey, I don’t want to do that. I want to operate. It’s fun.”) Yet his style also communicates something reassuring: I’m tough, so you don’t have to be. You’re in good hands. You’re going to be all right.
It was the sort of assurance that Tilbury and Gillespie were in need of. A few months earlier Ain had fused several vertebrae in Tilbury’s unstable neck, a consequence of SED, his particular type of dwarfism. Tilbury had been in a halo — a sort of metal brace — for two months, and the indentations from the screws were still clearly visible on the sides of his forehead, even though he had been wearing a less restrictive type of halo for some time. His appointment with Ain was short and to the point: Tilbury wanted to get rid of the hardware; Ain wasn’t so sure.
“We’ve been ahead of schedule every step of the way,” Tilbury said, with Ain — a good six inches taller — towering over him.
“Yeah, because of you,” Ain replied.
“I’m a fast healer.”
“No, because you’ve been loosening your halo.”
Ain then removed the halo. “You look great,” he told Tilbury. “You look like a million bucks.” Tilbury, who used to swim the length of a football field every day in the ocean near his home in the Miami area, asked if he could start swimming again. Ain told him yes, but only in a pool. Sit-ups? No, too much strain on the neck. “Go slow,” Ain told him, reminding him of the negative consequences of his fusion surgery. “A lot of your mobility is going to be lost. We talked about that.”
Later, Ain stopped in to examine Gillespie, who was at Hopkins for the first time. Gillespie has pseudoachondroplasia, a type of dwarfism that got its name because scientists believed it was similar to achondroplasia, the main exception being that facial features are unaffected. Now they know better: pseudoachondroplasia is actually more like SED, and people with the condition tend to have a lot of orthopedic complications, especially as they get older. Gillespie told me that Kopits had replaced both his hips and had corrected a “windswept” deformity — that is, one of his legs was bowed out and one was knock-kneed, so that they both were bent in the same direction. He had come to see Ain because of hip pain, and he suspected that he needed another hip replacement. But Ain wasn’t so sure. “You actually have more movement in your hip than you do in your knee,” he told Gillespie after examining him. Ain ordered more x-rays, and asked Gillespie to supply him with the last set that Kopits had taken so that he could do a comparison.
Gillespie also wanted to know if it was really necessary to come all the way back to Baltimore for a hip-replacement operation. Couldn’t that be done just as easily back home? “We operate on more little people than anybody in the country,” Ain replied, telling him that he performs surgery on 130 to 150 LPs a year, including hip work — and “it’s completely different from average-stature.” In addition, Ain told him, Johns Hopkins’s anesthesiologists, nurses, and other medical staff members are experienced in working with dwarfs. “That’s just as important — maybe more important,” Ain said. “You only have one body. And, unfortunately, a lot of times you have only one shot at it.”
For Tim’s third birthday, in January 1995, we took the neighborhood kids bowling. Becky didn’t bowl — she’d only been walking for a few weeks. But she delighted in staggering around and soaking in the atmosphere. She’d lurch toward the alleys, and Barbara would grab her away and put her down; then she’d head right back toward the action.
I didn’t know it — how could I? — but that day marked the beginning of a new phase in my relationship with Becky. There’s never been any problem figuring out what to do with Tim. We could always play catch, go bike-riding, or hike either in the nearby woods or in the White Mountains of New Hampshire. With Becky, it was always harder. She couldn’t do as much, and, since she also lacked Tim’s verbal agility because of her hearing and language-processing problems, it was, and is, sometimes awkward to hold a conversation with her.
But it turned out there was one thing we could share, and it was something I would not have expected: sports. Becky loves bowling and miniature golf. Every so often, on a rainy afternoon, we’ll head down to the local candlepin-bowling emporium and play a string or two on one of the kids’ lanes, where bumpers keep the balls from rolling into the gutter. I’m not good at it, and she has beaten me — legitimately — a couple of times. She even has a framed certificate in her bedroom that I made to commemorate one of those occasions.
I like miniature golf better than bowling, and so does she. She’s so ambidextrous that I sometimes have to remind her to hold the putter left-handed, which is her stronger side. But from the time she was a toddler, she has taken it seriously, lining up her putts, concentrating, and jumping up and down excitedly when the ball drops in the cup. Once she got so excited that she fell and split her head open on the jagged edge of a bolt sticking out of a bench, requiring fourteen stitches and leaving her with a one-inch scar in the middle of her forehead. She was a little leery about returning to that particular course. But she did.
I’ve always felt like Tim and I occupy the same world. Becky lives in a world of her own — indeed, Barbara and I have occasionally joked about “Planet Becky” to describe her obliviousness — and sometimes a strategy must be worked out in order to find a point of entry. Even when I can’t find much of anything to talk about with her, I know that we can communicate on some non-verbal level at the bowling alley or over miniature golf.
This bond has taught me something else about Becky, too. She has a strong personality; she is self-contained and stubborn, and is not easily dissuaded. I don’t know how this happened — how she came to be imbued with traits that will stand her in such good stead as she makes her way through a world that won’t always understand her. But I do know that I have felt the same strength of character in every successful LP adult I’ve met. Including Michael Ain. As a patient, Becky has seen him once. I hope she’s lucky enough not to see him again in that capacity. But there’s a lot more to Ain than his skill with a scalpel.
Becky met Dr. Ain in the fall of 1996, not long after she had turned five. Ain and several other specialists from Johns Hopkins were visiting a Little People of America regional conference in Lowell, Massachusetts, and Barbara and I wanted them to give Becky a once-over. For all her respiratory problems, she had never actually been seen by a dwarfism doctor. For decades Hopkins, and its Greenberg Center for Skeletal Dysplasias, has enjoyed a reputation as one of the world’s leading centers for the treatment of dwarfism. Dr. Victor McKusick, a pioneer in identifying different types of dwarfism, now in his eighties, remains affiliated with Hopkins. Dr. Kopits, too, was based at Hopkins for much of his career.
Barbara took Becky to a neurologist, Dr. Orest Hurko, on a Friday afternoon, and I took her to see Ain the next morning. Ain was seeing patients in a hotel room. Becky jumped up and down on a bed, laughing, while we talked. He examined her. Her back was curved, but within normal range for a kid with achondroplasia. Her legs were bowed, but so slightly (indeed, I couldn’t see it) that she would not need leg-straightening surgery — a common operation for achon kids — unless the bowing got significantly worse. I liked Ain, and liked the gruff but playful way he interacted with Becky. And I knew that if she ever ran into a serious orthopedic problem, Ain was the doctor whom I wanted in the operating room.
But Ain is more than a smart, wisecracking guy and a gifted surgeon. He is also a fascinating case study in the dwarf community’s quest for identity. Billy Barty might be said to be pre-modern: an unabashed entertainer who took advantage of his size to make people laugh, but who also had the intelligence and foresight to create the framework around which a community could form. People such as Lee Kitchens, Jacki Clipsham, and Paul Miller, different though they may be in many ways, are modern: they see their dwarfism as a simple fact of life, as a disability that places them within the mainstream of the disability-rights movement. They reject the freak-show images of the past in favor of dignity and equality.
Michael Ain, by contrast, is postmodern, a man who, at various stages of his life, has ignored his own place within the dwarf community. If Barty represents dwarfism as group identity; if Kitchens, Clipsham, and Miller represent a tenuous balance between group and individual identity; then Ain represents a quest for a purely individual identity, with his dwarfism as something entirely separate from who he is as a person. I’m oversimplifying, of course; all of these categories overlap, and Ain is not the first person with dwarfism ever to succeed outside of a group context. But Ain’s success says something that is particularly significant now, nearly fifty years after the rise of an organized dwarf community. In a world that has usually seen dwarfism — and any kind of difference — as metaphor, Ain wants you to forget the metaphor, forget the community, and consider him purely as an individual.
Ain has never attended a Little People of America conference except as a doctor. His wife is average-size; they have two young girls, one average-size, one achon. He has been frequently profiled in the media, including a segment on ABC’s 20/20, and the experience invariably leaves him with mixed feelings: he’s glad to do it, but at the same time he knows it’s as much because of his short stature as his surgical skills.
“I don’t know if I resent it,” he told me during an interview in his office after a long day of surgery and clinical appointments. “Part of it bugs me. When I was applying to medical school and residency, I caught a lot of prejudice because of my stature. And now I’m getting all this media attention because of my stature. I think I’m a pretty good orthopedic surgeon. And someday I’d like to get some media attention just because I did something really cool with orthopedics.” He recounted the time that UPI did a story on him when he was playing second base for Brown, even though he hadn’t been a starter and hadn’t had a particularly good season. He knew it was because the media couldn’t resist the angle of a four-foot-three baseball player. “I didn’t want to do that interview, either. I don’t enjoy it,” he said. “I’m a fairly private person, and my private life is my private life.”
When I pointed out that I was doing the same thing, interviewing him as much because of his dwarfism as his skills as a surgeon, he rolled his eyes and replied, “I might look stupid” — then quickly added, “I’m just teasing.”
Ain seeks to be an individual in a culture that sees dwarfs as dwarfs first, people second. And for all the real progress that has been made in recent decades, the main difference is in our changing perception of group identity — not in a diminution of group identity, which would allow us to focus more clearly on the individual. Yes, Michael Ain is a dwarf. But a more important truth is that he is a person — a person with dwarfism, to use that phrase again. Despite some hurdles placed in his path because of his dwarfism, he is a success, respected for his skill, sought out by dwarf and non-dwarf patients alike. Yet the tendency is to see him as a Positive Role Model more than an ordinary person who likes to golf and tell bad jokes in the operating room.
There’s nothing wrong with being a good role model, obviously. But to elevate Ain because of his genetic difference is as dehumanizing, in a way, as it would be to denigrate him for it.
For anyone who’s part of what the sociologist Erving Goffman calls a “stigmatized group,” identity as part of that group can all too easily take precedence over individual identity. Our changing attitudes toward dwarfism can be seen through artistic representations. Mini-Me and the late Hank the Angry, Drunken Dwarf aside, these representations are considerably more enlightened than they used to be. But the individual within is rarely shown, and even when he is, it is strictly within the confines of a group context.
Not long ago I rented the 1932 film Freaks, directed by the horror-movie pioneer Tod Browning. Freaks is a monumentally bad movie, and it was considered so offensive in its day that it was virtually impossible to see for many decades, excoriated in the United States and actually banned in Britain. Yet what fascinated me most was not its exploitive nature, which I had expected, but Browning’s apparent good intentions. At the beginning of the film, we are told that “freaks” — that is, the disabled freak-show actors who made up much of the cast — are as human as anyone else. And in fact, the first two-thirds of the movie consists of such folks as proportionate dwarfs, an achondroplastic dwarf, mentally retarded microcephalics (“pinheads,” as they were known; think of Bill Griffith’s cartoon strip Zippy the Pinhead), and people without any limbs, all of them going about their business as normally as possible. It’s voyeuristic yet progressive at the same time.
Later, though, the movie transforms itself into the nightmarish vision of disability that the earlier images seem designed to counteract. When the average-size trapeze artist and her strongman boyfriend attempt to poison the dwarf she had married for his inheritance, the “freaks” murder the boyfriend and mutilate the bride, turning her into a monster that is part-woman, part-chicken. (Like I said, it’s a bad movie.) As the critic Joan Hawkins observes, the dénouement “directly contradicts the argument for tolerance that we are given at the beginning of the film. Having been initially reminded by the barker that physical difference is an ‘accident of birth,’ not the visible sign of some inner monstrosity, we are ultimately presented with a woman who has been turned into a freak as punishment for her immorality and greed.” Browning tells us that difference is morally neutral; then he shows us that it’s anything but.
One night when Becky was still a baby, we rented an Argentine film called De eso no se habla (“I Don’t Want to Talk About It”), a 1994 movie directed by Maria Luisa Bemberg. One of the stars is an achondroplastic woman named Alejandra Podesta, who marries a mysterious stranger played by Marcello Mastraoianni. We’d heard good things about it, and for the most part we were rewarded with a well-rounded coming-of-age portrait of a young woman with dwarfism. At the end, though, she runs away from the carefully constructed life that her overbearing mother (Luisiana Brando) has built for her so that she can discover her own individuality — which she accomplishes by joining the circus. We see her being greeted by a circus dwarf as she embarks on her new life. The message is muddled but unmistakable: despite being well-educated, happily married, and apparently accepted by her community, she can’t truly discover herself except by being with her own kind.
The modern version of this attitude was portrayed on television not too long ago, on the popular CBS show CSI. A murder has taken place at a Little People of America conference, and the crime-scene investigators have been called in to solve it. In the course of the next hour, we are treated to an earnest, politically correct, if not entirely accurate, seminar on the world of dwarfs and dwarfism. The dwarf actors themselves play characters who come across as capable and competent, yes, but also as prickly, defensive, bitter, even angry at their lot in life. The murderer turns out to be a dwarf who didn’t want his average-size daughter to marry a dwarf man — a rather nasty bit of self-hatred that was so predictable I’m surprised it made the final cut.
I don’t mean to be overly critical. The CSI episode stood out in many ways because of how good it was. We’ve certainly come a long way since Freaks. But I was struck by how even the most well-intentioned scriptwriters manage to fall into the trap of portraying dwarfs as associating mainly with other dwarfs (the LPA conference setting, after all, was an artistic decision, not a necessity) and as profoundly damaged by the mere fact of their dwarfism.
The one dwarf who might have been able to assert his individuality was the man who had been carrying on an affair with an average-size woman. And he was dead before the opening credits had finished rolling.
The group identity portrayed in CSI is clearly more progressive than that in Freaks, or even in De eso no se habla. But true individual identity is reserved for the average-size people who direct the dwarfs’ lives. For the most part, the dwarfs are not actors; they are acted upon. And when they do act, it is in negative, even horrifying ways: to kill and mutilate, to join the circus, to plan and carry out a complicated murder in a twisted effort to negate one’s own dwarfism. This is not the world in which Michael Ain resides. Or, for that matter, Martha Leo.
If Martha Leo has had a harder time than Michael Ain in persuading the world that she is somebody, that she’s an individual, it’s because she’s had a more difficult road to travel. She’s not much older than Ain; she was forty-six when we met at her apartment on a warm April morning in a dodgy, lower income neighborhood in New Haven, Connecticut. But though she hasn’t attained the same type of success and recognition, her story of perseverance and of overcoming the odds is, if anything, even more impressive.
Leo has a rare type of dwarfism called SMED, an acronym for spondylometaepiphyseal dysplasia type Strudwick, which is related to SED. She stands just three-foot-two, barely coming up to my waist. When I accepted her offer of a cup of coffee, she scampered up a massive, four-step wooden platform to get her coffeemaker. A few minutes later I watched as she kneeled on her kitchen sink and reached as high as she could to get the sugar. “One thing about being little,” she quipped, “you can never say we don’t get enough exercise.” Fifteen cats were running around her apartment, and she made an unsuccessful attempt to persuade me to take a few home. She had recently suffered a retinal detachment in one eye, a not-uncommon complication for people with SMED. And though her vision in the other eye was fine, she was at considerable risk of a detachment in that eye, too — and, thus, of permanent blindness.
Leo lives in constant pain — so severe, she told me, that she takes methadone, a powerful narcotic normally given to heroin users trying to break their addiction. Despite all this, she is a cheerful, attractive woman with long, reddish-blond hair pulled back by a barrette. We chatted amiably for nearly two hours on her front steps, pausing only so she could acknowledge an occasional “Hi, Miss Martha!” from her predominantly African-American neighbors. Leo herself is white.
Born in Bayonne, New Jersey (she sometimes wonders if her dwarfism was caused by exposure to toxic waste), she was a sickly baby with a cleft palate who would have been left to die had her mother not insisted that her newborn child be taken out of the nursery and brought to her. But when Martha was just two, her mother — overwhelmed by her daughter’s health problems and her marriage to a man whom Leo describes as an abusive alcoholic — placed her in an institution far from home, the Pine Harbor School, in rural northwestern Rhode Island. Young Martha was there for about eight years, and her memories of the place, though filled with holes, include some striking moments of clarity. Of a “wonderful nurse” named Jeannette Bruneau, who brought her Spaghettios and who later died of cancer. Of watching Leave It to Beaver at four-thirty every afternoon. Of kids with serious, unusual physical differences, including two who were hermaphrodites. Of playing with the only two children in the school other than her who weren’t mentally retarded.
“It was so weird because you didn’t know anything else,” she said. “There were two kids who were pretty much normal intelligence, like myself. One kid had encephalitis as a baby, huge head. Sad. And the other one, Andrew, was just a throwaway. He was born practically on the sidewalk. He was placed there because there was no home for him. And it was the three of us. We used to dig to China — myself, Andrew, and Billy.”
Leo suggested that I talk with her mother to fill in some of the missing details; but later, she told me that her mother didn’t want to be interviewed. So I drove to the Providence Public Library one morning to see what I could find out about the Pine Harbor School. I learned that it was an institution housing about eighty children, who were invariably described as “retarded” or even “profoundly retarded,” the presence of Martha and her friends Andrew and Billy notwithstanding. I read a story on the front page of the Providence Journal from 1948 that reported an eleven-year-old girl had died after having been severely scalded in a bathtub. The police ruled that the death was “[p]resumably accidental.” The then-owner’s lawyer told the Journal, “Well, go ahead and publish it if you want to. I don’t intend to give the Journal any information.” The article also noted: “The child was described in the police report as an imbecile.” Martha was there from about 1957 until 1965, when the school was acquired by the Sisters of Mercy, who continued to operate it until shutting the place down in the early 1970s. Even assuming that the staff tried to do its best, it’s hard to imagine a worse environment for such an intelligent, energetic child.
Fortunately, Martha had not been abandoned. Her mother, who by the mid-1960s was living in Norwalk, Connecticut, finally divorced her husband and rescued her daughter from Pine Harbor. Martha’s cleft palate was repaired when she was thirteen. And her mother undertook to mainstream her bright but barely educated daughter in a combination of private and public schools. Even though a doctor at Yale pronounced her retarded, she caught up quickly. She went to Grateful Dead concerts; she saw Bob Marley in Providence just before he died. (“At that time, he was quite sick. But he did his best.”) And, against all expectations, she graduated from high school; attended Greater Hartford Community College; and then transferred to Rhode Island College, where she majored in social work and interned at a social-service agency that helped Laotian and Cambodian immigrants. “I was raised in Rhode Island, and I wanted to go back and show them I wasn’t retarded,” she told me. “And I did quite well.”
She got her master’s degree from Southern Connecticut University, walking every morning through the neighborhood that she lives in today. And she worked as a state vocational rehabilitation counselor for fourteen years, retiring in November 2001 because of a combination of mounting health problems and budget cuts that were making her job increasingly hectic and impersonal.
“I just had some serious job-performance problems,” she said. “And I admit it. The last two or three years I was not doing well, and I knew it. I used to come home and cry and scream. One time I got so — I think it was one of my worst times — even my eye surgery doesn’t compare to the pain I experienced that one particular day and night about the job. I came home and I knew something terrible was happening, and I couldn’t figure it out, except I was not doing my job. I just couldn’t function. And I cried and screamed and drank a little too much that night, to the point where my neighbors called the cops. I was out here crying away, bawling, bawling at the top of my lungs, like, losing it. Literally having a breakdown. I got juiced up pretty good, too — a little too much vodka.”
There’s a tendency to infantilize little people, to treat them as something other than adults with the same dreams and fantasies and desires and vices and problems as everybody else. Martha Leo, no less than Michael Ain, wants to be understood: three-foot-two or not, she is an individual, she is somebody, a somebody who’s gone to Grateful Dead concerts with “long, blond hair down to my fanny,” who drinks, who takes methadone, who hasn’t always been a model employee. And who has sex. And who gets mildly irritated if you don’t ask her about it.
“What about my love life? Little people have love lives,” she said, admonishing me for my failure to ask. She plunged right in. “I don’t really have any one single person now. But I was going with a guy named Dave, who is, shall we say, an urban person from the ghetto. He was a very strong person in my life for about four years. We lived together for about a year, and then I couldn’t take it anymore. I met him at the time he was alcoholic, big-time, falling-down-steps kind of stuff. Threw him out the door with his bag and all, and said, ‘Go get yourself together.’ I’ll never forget it. December 19th. Cooold, ice, slush, the worst day you’d ever want to put someone out. I can be very tough when I have to be. Oh, a bitch.”
I asked if Dave was a dwarf. “No,” she replied. “He was average-size. Unlike many of my past dates, he was about five-nine, kind of short — not real short. No, he’s a normal, healthy black man. I’m attracted to black men. I don’t know why, but I am. Most men I’ve gone with are six foot. I’ve always been attracted to tall men, big guys, you know? And I think it has to do with the security factor and all that, too. I don’t have any stable boyfriends, shall we say. I have, like, friends who I’m comfortable with.”
She batted her eyes at me and laughed. She knew exactly what she was doing. She had planted in my mind the picture of this tiny, fragile-looking white woman making passionate love with a succession of six-foot-tall black men, and she was now thoroughly enjoying my discomfited reaction.
I tried to steer the interview in another direction, asking her if she’d ever wished she wasn’t a dwarf, and she told me about the time she and her mother had ripped up a Sears catalogue and its images of tall, well-proportioned women. But it was no use. All I was thinking of was her and her boyfriend in her bedroom — the one she’d showed me when I first arrived. And of her screaming at him that she’d had enough of his goddamn drinking, and that he’d damn well better get out of her house now.
The woman sitting next to me was a dwarf, yes. But she was an individual. She was Martha Leo. And she’d made sure that I wasn’t going to forget it.
On the day before the Fourth of July in 2002, I hung out with Michael Ain in a three-room hotel suite in Salt Lake City. Several doctors were leaving for the long holiday weekend, but Ain and Kathleen “Dee” Miller — the clinical coordinator of Hopkins’s Greenberg Center and, like Ain, an achondroplastic dwarf — had agreed to see a few more patients that afternoon.
We ate takeout Mexican food while waiting for the first patients to show up. Ain joked about the time that the late Jacqueline Onassis had run into him at Andover and nearly knocked him over because she had failed to look down. Later his wrestling buddy’s roommate, who just happened to be John Kennedy, attempted to introduce Ain to his mother. “I said, ‘I think we’ve met before,’” Ain told me, “and she said, ‘Yeah, I think we have.’ He looked at me like I had three heads. How could I have met his mother before? So it was our little secret.”
I was about to see Ain at his best: interacting with children, putting them and their parents at ease while keeping them as healthy as possible. The first few cases were routine. A fourteen-year-old girl who’d been experiencing numbness when walking with a heavy backpack. (Ain told her to get a backpack with wheels.) A sixteen-year-old violin player who’d been having shoulder spasms, despite having put on an impressive display of country-style fiddling at the LPA talent show the night before. (Ain said there wasn’t much he could do unless she and her parents were willing to come to Baltimore for a more thorough examination.) A sixteen-and-a-half-year-old boy who’d had spinal-fusion surgery done by Ain two years earlier. (“It looks awesome,” Ain told him, adding with a laugh: “Whoever did this was really smart.”)
Then came a truly scary case — scary because it underlined exactly how tenuous the health of many dwarf kids can be. Until that spring, the only achondroplasia-related problem eleven-year-old Kate Peterson had experienced was the bowing of one leg; Steven Kopits had operated on her when she was six. Then, suddenly, she lost the ability to walk, regained it, then lost it again. She and her mother, Jennifer, flew to Baltimore from their home, just outside Omaha, Nebraska, so that Ain could crack open her spinal column to relieve the pressure and then perform a spinal fusion. She walked into the hotel bedroom three months later unassisted, looking quite healthy except for a massive head brace that was held in place via a frame strapped around her chest and back. Ain told Kate and her father, Russ, that she could switch from the brace to a soft cervical collar as soon as she got home — and maybe a month or so after that, get rid of that, too.
“She should chill for the next three months,” Ain told Russ Peterson, explaining, “For a fusion to be completely solid, as solid as it’s going to be, is one full year.” In other words, no running, no jumping, and no swimming, which Kate loved. As for the brace, Ain told her, “How about this — a year from now, drive over it with a car.” Later, in the waiting room, her father told me, “She’s a real brave kid. Obviously, Mom and Dad were real concerned.”
The last time I saw Kate was in the hotel elevator. She and her father hadn’t waited until they got home — they’d found a cervical collar in Salt Lake, and she was wearing that instead of the head brace. With the hardware gone, it was much easier to admire her head full of long braids.
“I so couldn’t wait,” she told me, obviously pleased.
My day with Ain at Johns Hopkins was different — more formal, busier, and, on the surface, at least, more dramatic. I saw him climb his step stool to perform a spinal fusion on a middle-aged achondroplastic man, lying face down, his back split open from one end to the other, Ain doing his dauntingly delicate thing while warning the anesthesiologist that the patient was starting to rouse himself. (“He’s moving. You guys understand that he’s moving, right?”) I saw him congratulate a young surgeon for doing a good job repairing a young girl’s broken elbow — then hang back so that he could discuss with him, out of my earshot, a communications breakdown that had taken place in the OR. (At least that’s what I think they were talking about.) I saw him try to talk a teenage boy and his mother out of removing a tiny growth from his hand, explaining it was so small that he wasn’t even sure he could find it. “Are you a tough guy or a wussie?” Ain asked the boy, putting up his small fists in mock combat. But the boy clearly wanted the growth out, so Ain gave it a try — and managed to find it, pulling out an object called a ganglion that looked like a small, elliptical marble.
Yet it was the encounter with Kate Peterson that I kept thinking about. I could see Becky in her, and her story reminded me that Becky’s good health is not something that we can take for granted, not for a moment. At the end of the day, in Ain’s office, surrounded by family photos and pictures, including a portrait of Theodore Roosevelt and a poster that read it’s not the size of the dog in the fight, it’s the size of the fight in the dog, I asked him how it happened that he — a guy who had always made a point of his dwarfism being unimportant — had come to take care of people like Kate Peterson and my daughter.
“Initially, I never wanted to do it,” he replied, still in his green surgical scrubs, fiddling with the cap from a bottle of Poland Spring water. “When I wake up in the morning, I don’t think of myself as a little person. When I go to bed at night I don’t think of myself as a little person. When I want to accomplish something, or whatever, in the course of a day I never think about it. I just go out and do what I need to do to have a great day.”
One day, though, he read a newspaper article about a family from Southern California who had been worried about the prospects for their achondroplastic daughter — and about how encouraged they’d felt after meeting a doctor with achondroplasia at a party. “That person was me,” Ain said. “And at that point it just clicked to me that, you know, God puts us on this earth for multiple reasons. I could be a businessman. I could be a hand surgeon. I could be an engineer. But maybe — without sounding melodramatic — I could touch people’s lives if I took care of little people. At that point, I decided that’s what I wanted to do. And I’m pretty happy that I decided to do that.” Today Ain handles 350 to 400 surgical cases a year, and about a third of those involve dwarfs.
But Ain didn’t simply jump into a closer association with the dwarf world — he was pushed, too. Until he decided he wanted to become a doctor, his dwarfism had almost never been an impediment. Then he ran up against the conservative medical establishment. He applied to some thirty medical schools, and was met with rejection after rejection until, finally, he was admitted to Albany Medical College, in New York. Then he applied to fourteen residency programs, and was rejected by every one of them. Ten or so surgical residencies; ten more rejections.
“Doctors are the most shallow, closed-minded, bigoted people that I’ve met in my whole life,” Ain told me. “It’s amazing. Not all, just like there are exceptions to every rule. But these people are atrocious. And they could not see beyond their nose. They did not want to recognize that this four-foot-three individual could do the job as well as them or better. I was so angry, I was so annoyed, I was so mad I didn’t know what to do.” Eventually, though, he was accepted into a fellowship in orthopedic surgery at Johns Hopkins. But the pain of rejection, of being turned down repeatedly because of his group identity (an inaccurate understanding of his group identity, at that) rather than because of his individual identity, continues to smolder. His anger — and his satisfaction over his eventual triumph — is not far from the surface.
“I remember there was this doctor I met in California, where I was doing a pediatric residency,” Ain said. “He was an orthopedic surgeon. I wanted to do research in orthopedics. I wanted to try to get back in the surgical field. And he told me, ‘You’re nuts. You’ll never be a surgeon. You should just be happy and grateful that you’re a pediatrician.’ Nothing wrong with being a pediatrician — that’s not what he said, that’s what I’m saying — but, ‘You should be grateful. Lucky you’ve gone this far.’ And then with this pompous fucking attitude he said to me, ‘You should thank me for this. You’ll look back at this day and thank me that I told you this.’ And he goes, ‘What do you think?’ I go — and I really said this — I said, ‘Well, if I listened to every fucking asshole who told me I couldn’t accomplish something because of my stature, I’d be sitting at home with my thumb up my ass.’ I mean, you don’t know me well, but I’m very blunt at times. I told him that. And he looked at me. And I said, ‘Fuck yourself,’ and I walked out of his office. And to this day he has to see me every year at the orthopedic meeting. He’s got to look at me and say, ‘I fucked up.’ He won’t apologize. He won’t ever come up to me. I’ve only had one person apologize to me. These guys, they would never say, ‘I made a mistake.’”
I was startled — as startled, in a way, as I had been four months earlier, when Martha Leo had insisted on telling me about her six-foot-tall boyfriends and her fury that had fueled the eviction of Dave, the hapless alcoholic. There was anger in Ain’s voice, even rage, a gritted-teeth, controlled, I-showed-the-bastards-anyway type of rage that I could understand intellectually but not viscerally. Rage I won’t be able to feel myself until Becky is laughed at, dismissed, rejected, and pushed aside because she’s short, because she waddles, because she’s not like everybody else.
Ain has a macho swagger about him, and it would be easy to say that his anger stems from not being treated like a man. But I don’t think that’s it. What he wants — demands — is to be treated like a human being, a person with his own individual identity, a person who just happens to belong to a group, but who is not defined by his membership in that group.
And I know that the day may come when Becky finds herself in the same position, and either overcomes her anger, as Ain did — or is overcome by it.