I think the only locus for hope in the face of these dismaying statistics is to recognize that new cultures are being born all the time. This book chronicles numerous communities that would never have emerged without the Internet and its potential to sort people according to one shared value, even when they are infinitely diverse in location, language, age, and income. Some of those communities are cultures. The computer code that is at this precise moment causing the movement of my fingers to create text on the screen I am gazing at is language, too, and such languages are being generated rapidly. Historic preservation is noble, but it should not forestall invention.
My own father’s culture was impoverished; he grew up in a tenement in the Bronx, made his way into the professional class, and raised my brother and me with many advantages. He has sometimes expressed nostalgia for that world he left and has tried to explain it to us. It is not our reality; indeed, it is hardly anyone’s reality. The world to which he was born, of recent Jewish immigrants from Eastern Europe doing manual labor and speaking Yiddish, has vanished. There is no question that something has been lost. Yet I prefer the prosperous, American way I grew up. Jackie Roth spoke to me about today’s Hasidic Jews. “They feel safe amongst themselves,” she said. “They have their Shabbos on Friday night, they go to synagogue. They have their own schools, they have their own traditions, they have their own everything. Why bother with the rest of the world? That’s what’s happening with the Deaf community. It’s going to be smaller and smaller, and the outliers are going to be increasingly marginal. We’ve got to stop playing deaf.”
My first book was about a group of Soviet artists who evinced courage and brilliance in the face of an oppressive and cruel system—and then the Cold War ended, and their tremendous accomplishments became historical, and while a few negotiated the Western art scene’s commerce and museums, many never made a decent work of art again. Deaf culture has been a heroic enterprise all this time, a beautiful, ingenious marvel, and now, like Soviet dissidence and Yiddish theater, it is slipping out of relevance. Some things from it will be carried forward, but the occasion of its brave dignity is passing. Every bit of progress kills something, but also encodes its origins. I do not wish for the life my father left behind, but I know that some spirit forged in that particular adversity made me possible.
Looking at the vogue for ASL among hearing people, the activist Carol Padden asked, “How can two conflicting impulses exist at the same time—to eradicate deafness and yet to celebrate its most illustrious consequence, the creation and maintenance of a unique form of human language?” One thing has no bearing on the other. You can admire Deaf culture and still choose not to consign your children to it. The loss of diversity is terrible, but diversity for the sake of diversity is a lie. A Deaf culture kept pure when hearing is available to all would be the equivalent of those historical towns where everyone lives as though it were the eighteenth century. Will those born without hearing continue to have things in common? Will their language remain in use? Of course—just as candles have remained ubiquitous in the age of electricity, just as we wear cotton in a time of microfibers, just as people read books despite television. We will not lose what Deaf culture has given us, and it is a worthy cause to delineate what parts of Deaf culture are precious and why. But vertical demand for medical progress will inevitably outflank any horizontal social agenda.
III
Dwarfs
Until I attended my first dwarf convention—the 2003 Little People of America (LPA) meeting in Danvers, Massachusetts—I had no clue how many kinds of dwarfism there are, nor how many varieties of appearance are collected under the category. Dwarfism is a low-incidence condition, usually occurring because of a random genetic mutation. Since most dwarfs are born to average-height parents, they do not have vertical community. There has been occasional talk about building a town for little people (LPs); there are metropolises where activist LPs have settled; there are high concentrations of otherwise rare dwarfing conditions among the Amish; but there has never been a significant geographic concentration of people of short stature. This means that the national LPA gatherings are not simply occasions to attend lectures and consult medical experts; for some participants, they are the annual exception to a certain kind of loneliness. The gatherings are emotionally intense; one dwarf I met told me she was “happy for one week a year,” although others emphasized that they love both of their lives—the one in the larger world, and the one among their LPA friends. More than 10 percent of Americans of short stature belong to LPA, and the organization has a role in the LP community that is greater than that of similar groups for comparable populations.
Arriving at the Sheraton Ferncroft Resort, where the convention was taking place, I was struck by how the concentration of LPs changed my perception of them. Instead of seeing, primarily, short stature, I saw that one was exceptionally beautiful, that one was unusually short even for a dwarf, that one laughed uproariously and often, that one had an especially intelligent face—and so I began to recognize how generically I had responded to little people until then. I understood what a relief it had to be for them that no one was focused on their height. Of course, the LPA convention was all about stature, but it was also the place where stature became blessedly irrelevant.
It would be difficult for an outsider to acknowledge this particularizing view of, for example, Latinos or Muslims. To say that a person’s ethnicity or religion had overwhelmed, even temporarily, one’s ability to appreciate his other personal characteristics would seem bigoted. But dwarfism has been the exception to these social rules. According to Betty Adelson, author of The Lives of Dwarfs and Dwarfism, “The only permissible prejudice in PC America is against dwarfs.” Mary D’Alton, chair of Columbia University’s Department of Obstetrics and Gynecology and a leader in the field of high-risk pregnancy, told me that dwarfism is the most difficult diagnosis to communicate to expectant parents. “You say that the baby has a hole in his heart,” she said, “and they say, ‘But you can fix that, right?’ But when I tell someone that they will be having a dwarf, they often seem disgusted by the idea.”
Many of the attendees I met my first day at LPA could identify instantly conditions that I had never heard of or imagined and had certainly never seen. When I went down to the conference disco the first night, I saw a brother and sister who had primordial dwarfism; they were full-grown, perfectly proportioned, and only about twenty-nine inches high. Their parents stood with them to make sure they weren’t trampled—a danger even at the dwarf convention. I learned that the girl played percussion in her high school band; she had a classmate who pushed her tiny wheelchair, and she held the drum in her lap—looking, in the words of a dwarf who was herself just three foot eight, “like a marionette.” The conference featured athletic competitions; a marathon-length talent show, including acts from Christian music to break dancing; and a fashion show, which revealed a broad range of dressy and casual styles, all tailored to little bodies. The conference also provided an eagerly awaited opportunity for dating. A dwarf comedian cracked, “You know you’re a teenager at LPA if you’ve had more boyfriends this week than you’ve had in the last year.”
• • •
When I met Mary Boggs on my second day at LPA, she told me that the organization had changed her life. When her daughter Sam was born in 1988, the obstetrician initially assumed that the baby’s diminutive size was a result of her premature arrival. A month later, while she was still in the neonatal intensive care unit, he diagnosed her with achondroplasia. “We would have rather had a child that was deaf or blind,” Mary told me. “Just anything besides a dwarf would have been better. When you’re thinking about what could go wrong with a pregnancy, this doesn’t cross your mind. We were thinking, ‘Why did we have another child at all?’”
Sam came home to her parents’ house in the suburbs of Washington, DC, on oxygen and a monitor. After six months, when Sam was declared physically healthy, Mary took her to her first local LPA meet
ing. When Sam was a year and a half old, she had a shunt inserted in her head to relieve her hydrocephalus (the accumulation of cerebrospinal fluid in the head); fortunately, she did not have the skeletal problems that in later life afflict so many people with achondroplasia. Mary and her husband got step stools and put them all over the house; they purchased light-switch extenders; they moved the faucet on the kitchen sink. These adjustments at home were easier to control than the challenges outside. “We’ve had people chase us down the grocery aisle to ask questions,” Mary said. “We learned to stare back. It frightens them off. I’d watch Sam not playing with the other kids because she’s too small to do what they do. You just feel sad.”
Before Sam set off for kindergarten, her parents told her that other kids would call her names; they reviewed what some of those names might be and taught her appropriate responses. Mary went to the school and explained Sam’s special needs, giving the teacher a book about dwarfs that she could read aloud to the class. The school lowered the sink and water fountain and installed a grab bar so Sam could pull herself up on the toilet. The kids in her class learned her story, but each year it was new to an incoming kindergarten class, and some would call her names. So Sam decided to make a presentation to each incoming class. She would explain, “I’m little, but I’m eight years old. I’m in third grade. I’m a dwarf, and I’m just like you all, but just short.” She did that every year through elementary school, and the teasing stopped.
When Sam was five, the Boggs family attended their first national LPA convention. “We walked in and saw a thousand dwarfs,” Mary said. “Sam was in shock. I thought my other daughter, who is average height, was going to cry. It took two or three days for us to take it in.” Over the years that followed, the Boggs family persuaded extended family and friends to come to meetings, so that they would know dwarfs other than Sam. “The grandparents could see adult dwarfs and realize, ‘Okay, this is what Sam’s going to look like,’” Mary said. She considered for a minute. “We went for Sam, but also so we could be comfortable with her. To make it easier for us to love her right.”
Middle school was more difficult than elementary school. “People who had been friends for years were suddenly not wanting to hang out with her anymore,” Mary said. “She was not called to go roller skating or go to the movies on Friday night. They pretended that it wasn’t because she was a dwarf. But she knew.” The athletics department gave her a varsity letter for being manager of the track team; she participated in student council and was elected treasurer of her class. Despite this, she was down to a couple of friends. “She’s a little lonely,” Mary said. “She’d have crushes on the boys at school, but eventually realized that average-size guys were not interested in going out with her. It was a big turning point when she started looking more at the hot guys at LPA.”
When I met Sam, she was in the throes of her first romance. She was fifteen going on sixteen, attractive and strikingly mature, and, at three feet nine inches, fairly short for a teenager with achondroplasia. Mary was optimistic about the future. “I would prefer for her to have an LP boyfriend or LP husband,” she said to me. “I think it’ll be easier for her. It’s kind of neat. I mean, you have a dwarf child. But it doesn’t just stop there; it goes on forever. We’re going to have, probably, a dwarf son-in-law, and dwarf grandchildren. What used to be an average-size family then becomes, when we’re gone, a dwarf family! And to think, if I’d known about this early in my pregnancy, I might have terminated.”
• • •
Writing in 1754, William Hay, a dwarf and the first notable memoirist of disability, described visiting a general: “I never was more humbled, than when I walked with him among his tall Men, made still taller by their Caps. I seemed to my self a Worm and no Man: and could not but inwardly grieve, that when I had the same Inclination to the Service of my Country and Prince, I wanted their Strength to perform it.” This feeling of inadequacy salted with the wish to transcend it has been a common narrative among dwarfs, but in the long pause between Hay’s dignified early account and the modern literature on the experience of being an LP, a grossness of prejudice has often quelled that dignity.
Woody Allen once quipped that dwarf is one of the four funniest words in the English language. To be in your very essence perceived as comical is a significant burden. When I described the other categories included in this book, my listeners were hushed by the seriousness of the enterprise; at the mention of dwarfs, friends burst into laughter. I would describe, for example, the time during a convention when a miscreant dwarf had made a bomb threat at 8:00 a.m., so that all hotel guests, most recovering from a night of intense partying, had to evacuate the building. People found hilarity in the mere idea of some five hundred sleepy dwarfs, many of them hungover, standing in the hotel’s forecourt. This had some resonance for me; I know that not so long ago, people might have found the idea of five hundred sleepy homosexuals similarly hilarious. But homosexuality can be hidden, and being among gay people is not a visual gag. Passersby who might avert their eyes tactfully from wheelchair users stare at dwarfs. A sighted woman who marries a blind man inspires admiration; an average-size woman who marries a dwarf inspires suspicion that she has a fetish. Dwarfs still appear in freak shows; in dwarf-tossing competitions; and in pornography, where a whole subgenre featuring dwarf sex exploits an objectifying voyeurism. This is testimony to a callousness beyond that shown to almost any other disabled group. Barbara Spiegel, now director of community outreach at LPA, described how her grandmother said, “You’re a beautiful girl, but no one’s going to marry you. You need to be able to do everything because you’re going to be alone.” Barbara’s stepmother complained about having to be seen on the street with her.
More than 80 percent of people with skeletal dysplasias—the primary dwarfing conditions, the most common among which is achondroplasia, resulting in shortened limbs, a large head, and an average trunk—are born to average parents with no history of dwarfism in their families, either because of de novo mutations or because both parents carry a recessive gene. Other forms of dwarfism include pituitary dwarfism, based on lack of human growth hormone, and psychosocial dwarfism, caused by severe physical abuse.
Parents are still dealing with a legacy of blame assigned to mothers. From medieval times into the eighteenth century, “monstrous births” were said to indicate the unfulfilled desires of lascivious women, whose obscene longings supposedly produced deformity. This theory, called Imaginationism, was hotly debated for hundreds of years. The Princeton historian Marie-Hélène Huet describes how “in the nineteenth century, discoveries in the fields of embryology and heredity provided scientists with new ways of explaining resemblances. But if the mother’s imagination was no longer perceived by the medical field to be a factor in resemblances, its role as the shaper of progeny was never totally forgotten.” John Mulliken, a pediatric surgeon, writes that every parent wants to know what he or she did to cause the situation. “In most cases, the answer is nothing. But every mother is blamed.”
Dwarfism is also often outside the experience of doctors with whom these parents initially interact, and parents frequently recall being told of the condition with particular insensitivity. Adelson recounts one doctor’s pronouncement to the parents of a newly diagnosed child—“You have given birth to a circus dwarf”—and another’s equally heartless recommendation that a child he had diagnosed should “be institutionalized or sent to live with a dwarf troupe in Florida.” One mother reported that most doctors acted as though her daughter were defective and therefore didn’t deserve to be treated like a “real” baby. Another described being in the delivery room with her dwarf husband when the doctor said to them both, “I regret to tell you that your child is a dwarf.”
Such behavior from a doctor is not merely a breach of etiquette; the way the news of a dwarfing condition is communicated to parents may have a lasting effect on their ability to love and care for their child. Mothers and fathers are helped by knowing right aw
ay that the child will have a full life span, that they did not cause the dwarfism through acts during pregnancy, and that their child can lead a happy, healthy, and independent life. Parents, in turn, influence friends and family; embarrassed parents create awkward friends. In addition to LPA, organizations such as the MAGIC Foundation and the Human Growth Foundation have fact-filled websites and sponsor both online chat rooms and local support groups, providing average-size parents of dwarf children opportunities to meet dwarfs who are living positive, fulfilling lives.
Nonetheless, many parents begin in sadness, denial, and shock. One dwarf, Ginny Sargent, wrote online, “No matter what we (as dwarfs) feel about how great it is to be alive, I still can’t help but wonder how much more pain (more than I) my mother was in when I was in discomfort . . . upset, hurt, or disheartened and beaten down by my uniqueness.”
Far From the Tree Page 17