• • •
Anna Adelson was born at Beth Israel Hospital in New York in 1974, and when her parents, Betty and Saul, first saw her, they were filled with joy. Betty was able to hold Anna for a few minutes before she was taken away to be cleaned up. The next morning and afternoon, Betty couldn’t understand why the nurses wouldn’t bring the baby to her. She kept asking, and a nurse finally brought Anna in, but seemed to do so grudgingly. That evening, after Saul had gone home to be with their four-year-old son, David, the obstetrician came in to talk to Betty. “He said to me, ‘I think there’s a fifty-fifty chance she has Hurler’s syndrome, which results in retardation and early death,’” Betty recalled. “Then he left, and alone, I wept through the night.”
The next day, just before Betty and Saul went home with Anna, the hospital neonatologist told them that Anna had “something called achondroplasia.” He asked, “Are there any short people in your family?” Betty said, “Our grandparents came from Eastern Europe—we’ve got lots of short relatives.” The neonatologist said, “Anybody with sort of a large head?” Betty said, “Me. I wear big hats.” The neonatologist looked grim and said, “She will be short.” Betty asked, “How short?” He answered, “Under five feet.” He did not give any further information about the potential complications and neglected to mention that most women with achondroplasia are closer to four feet than five. Betty went to the medical library at NYU and read. She wrote to a second cousin who was a pediatric endocrinologist, who replied, “There are these organizations, the Human Growth Foundation and LPA. Many people in these groups have good lives. Your daughter will probably be less disturbed by this than you.”
When Betty and Saul went for walks in their Brooklyn neighborhood, Betty would feel tears welling up every time she noticed a disabled person. “You fight your battles in the world, but you close your door and there’s comfort,” she said. “Now there was no door to close. I wanted to meet another family with a dwarf child, and I wanted to meet a happy adult. I kept in constant motion until I found them. Then I began to breathe again.” When Anna was four months old, Betty and her family found their way to Johns Hopkins and to Dr. Steven Kopits. “He would pick up the baby and exclaim in his Hungarian accent, ‘What a beautiful baby you have!’ He told you everything you needed to know, and what you should look out for. He would write a long letter to your pediatrician at home and make an appointment for you to come back for a follow-up. When we went to Johns Hopkins, I knew the medical part could be dealt with.” When Kopits died in 2002, one mother of a diastrophic dwarf wrote, “I cried more at his funeral than I did for my own father.” The mother of an achondroplastic dwarf wrote, “Dr. Steven Kopits has to be the greatest man that I have met in my life.”
In the 1970s, the Moore Clinic at Johns Hopkins had an annual symposium for LPs and their families. Betty went to her first one when Anna was ten months old. “There were all these people in the pool—many with deformities I’d never seen before—adults and children of every shape and size,” she recalled. “In bathing suits! I would look anxiously, and stare, and embarrassed by my staring, I’d close my eyes. Then I’d look some more. Until it sunk in. By the end of the day they had names and they were people whom I knew. Thirty years later, a lot of them are my friends. I am deeper and better for it.”
Betty Adelson’s activist career began shortly thereafter. When Anna was five, a social worker at the Moore Clinic invited some parents of dwarf children to weekend seminars to prepare them to mentor other parents. Betty and Saul went and soon joined a couple of dozen other families who lived on the East Coast to form a group called Parents of Dwarf Children. Betty and three other mothers wrote to the hospitals and clinics in their areas so that as soon as a dwarf was born, they could invite the families to their homes and offer support. “We’d help with information and medical referrals—but perhaps most importantly, offered them relationships with others who’d traveled a similar path,” Betty said.
Betty was able to help many parents, but some resisted what she had to offer. She described speaking with a woman who had just learned in her seventh month that she was carrying a dwarf. “I said, ‘Look. It’s not a garden of roses, but there’s a great deal that’s fine.’ She didn’t call. So I called her the next day. She said, ‘We decided to have an abortion.’” Betty explained that some people in LPA were longing to adopt a dwarf child. The woman said, “It’s a second marriage for both my husband and me. We’re both very beautiful people. We like to ski; we’ve had troubles before; now our life with each other seems to be perfect. We don’t want to deal with something like this.” After Betty described this encounter to me, I asked, “Would you have considered an abortion if you had known early in your pregnancy that you were carrying a dwarf?” Her eyes filled with tears. “I hope not,” she said. “I really hope not.”
Betty was by then familiar with the impediments that parents of dwarf children encounter. But her Anna was lively and sociable. “I went to the local Montessori school,” Betty said. “She did everything she was supposed to. She held the gerbil and played with it; she separated from her mother; she drew.” The school said they couldn’t accept Anna because she might fall on the stairs. After a protracted exchange of letters, the director backed down; by then, however, the Adelsons had decided to enroll her at a nursery school attached to their local synagogue, where the director had said at an orientation meeting, “If your child has any special needs, please let us know, so that we can help!” Anna prospered there.
Anna has been a vegetarian since the age of twelve; she’s marched for reproductive rights, and she traveled to Pennsylvania to ring doorbells for Kerry and for Obama. In junior high, when her school didn’t want her to go on a ski trip, Anna organized friends to picket the headmaster’s office. Remembering the incident, Betty laughed. “So that’s my Anna. How could I not be glad of her?”
During adolescence, despite overall high achievement, Anna found it hard to concentrate on her studies. She then announced that she was gay. “She came out by calling me from college,” Betty said. “The next day I wrote her a long letter. I told her that what was most important to me was not whether she loved a man or a woman, but that she loved and was loved well—that she experience passion, and the wonderful surprise of finding that someone feels about you as strongly as you do about them, lucky and full-hearted. I knew how important my reaction would be to her and was glad that I could tell her honestly that I believed that same-sex love was just as true and legitimate as love between men and women.” Anna’s father and brother were equally affirming.
Anna’s acceptance of her dwarfism took longer than her grappling with her sexuality. She had stopped going to LPA events in early adolescence, feeling that the world of her average-size family and friends was sufficient, but despite some hesitancy, she returned when she was twenty-five. She soon became president of her local chapter and organized a “Difference within Difference” workshop at national conferences for those short-statured individuals who are set apart from the majority of LPs by race, religion, disability, or gender preference. At the 2004 conference in San Francisco, she initiated the first workshop and reception for LGBT attendees, a breakthrough for LPA, which has many conservative members. She has hosted this group at most of the conferences since.
When Anna was still a teenager, Betty decided to write two books—one for a popular audience and one for an academic audience—as a way of paying tribute to and celebrating the dwarfs she had come to know and love. Anna said the project was fine as long as it wasn’t a book about her. Several years later, after noticing the piles of folders all over her mother’s study, Anna surprised her mother with the present of a file cabinet tied up with a red ribbon, and a note that said, Get yourself organized, Mom! By the time the final drafts were being written, Anna was almost thirty and she acceded to her mother’s request to write about her. She is mentioned with great tact and love in the afterword of Betty’s invaluable The Lives of Dwarfs.
That book and Betty’s numerous academic articles have helped to organize dwarf history, identifying historical figures who may have been dwarfs and looking at evidence for the role of dwarfs from dynastic Egypt and ancient Greece up to the present. Much of this history is a narrative of suffering and abuse. Unusual bodies have been described throughout history as reflections of sin, as omens from the gods, as the basis for laughter or charity or punishment. Leviticus stipulates that only men with perfect bodies could become priests, a sign of the emphasis placed on the normative form from ancient times. “I looked for precedents for what I was doing,” Betty said. “Most of the earlier books had titles like Freaks or Victorian Grotesque or Human Oddities. I thought, there have been dwarfs for as long as there have been people, and what were they like? What were their lives? Until LPA was formed, few dwarfs knew each other except for the ones in entertainment, or, in earlier times, the ones sometimes gathered by kings and queens at court.”
For many years, Betty took a leadership role on LPA’s advocacy committee. In 2009, impressed by the enthusiasm of the new generation of dwarfs, she decided that it was time for her to pass the torch, and at the LPA conference banquet, the Executive Board conferred upon her the group’s 2009 Distinguished Service Award. Anna, who was by then living happily with her girlfriend a few blocks away from Betty and Saul, made a moving presentation.
“She loves and is loved well, as I had hoped,” Betty said. “If Anna had been average, would my world have been narrower? Yes. I recognize the gift that’s been given. If someone had said to me, ‘Betty, how’d you like to give birth to a lesbian dwarf?’ I wouldn’t have checked that box. But she is Anna, cornerstone of the family. I wish the road had not been so steep for her, but I’m so glad she managed to climb it with grace.”
• • •
Martha Undercoffer, an LP, wrote in an e-mail to the Parents of Little People and Dwarfism Yahoo! newsgroups: “I have developed a safe and easy system to use. It is a business card. On the front: ‘Yes, I noticed your behavior towards me.’ (For some reason the public seems to think we don’t notice their treatment of us.) On the back: ‘I realize that you probably mean no harm by your actions and/or comments; however they did cause harm and were not appreciated. If you would like to learn more about individuals with dwarfism please visit http://www.lpaonline.org.’” One LP wrote online, “I’ve bought myself a little MP3 player and I listen to music so I can’t hear what anybody says about me, and I’m sort of in my own little world and I can do what I want.” The Internet has been invaluable for LPs. “The current generation of young dwarfs have an ability to interact that would have been my greatest fantasy,” one older dwarf told me.
Harry Wieder was among the most vital activists in the dwarf community. He was physically disabled and walked on crutches; he was gay; he was nearly deaf; he was often incontinent; and he was the only child of Holocaust survivors. He could be overbearing and exhausting, and his activism was always tinged with anger, but he was also full of relentless life. At fifty-seven, he was hit by a New York taxi and killed. When I described his litany of challenges, people would make laughing references to Job. Yet, he had decided that his disadvantages would be his crown of honor, and he achieved a wild gallantry in his very openness. I can remember his saying that most gay dwarfs at LPA wouldn’t identify themselves because of stigma, but that he didn’t believe in the opinions of others. He added, “Gay people are called fairies, and if I’m a fairy and a dwarf, I’m a magical children’s story of my own. Where Judy Garland fits in is anyone’s guess.”
Harry complained that most dwarfs were so set on the politics of inclusion that they refused to acknowledge they were disabled—“and if they won’t acknowledge that they’re disabled, do you think they’re going to acknowledge that they’re gay?” Harry had learned from his parents’ experience during the war that ignoring your identity did not, in fact, afford you protection. He achieved a great dignity through that belief. At his funeral, his eighty-seven-year-old mother, Charlotte Wieder, was taken aback by the great outpouring of grief, and by the many public figures—including the Speaker of the New York City Council, a state senator, and numerous other dignitaries—who attended. Charlotte told a journalist that she could not take credit for his accomplishments; indeed, she had often tried to contain his excesses—partly out of concern for his health, and partly out of a distaste for all that stigma. “In spite of my very strong feeling to protect him,” she said, “I could not hold back his good.”
The relentless visibility of dwarfs is amplified by their iconic place in fairy tales as supernatural beings, a burden not shared with any other disability or special-needs group. An essay in the New York Times has spoken of the “cruel folklore” in which dwarfs are “ugly Rumpelstiltskins.” Joan Ablon wrote, “Dwarfs carry with them the historical and cultural baggage of special and even magical status. Persons in the general population thus exhibit great curiosity about dwarfs, stare at them often unbelievingly, and in some cases even try to photograph them in a chance encounter.” This strange awe of dwarfs can be as unsettling to them as disparagement; it is, above all, an emphasis on difference. Anne Lamott, a British dwarf, said that she thought about being little about as much as she thought about having teeth—that it was simply part of who she was and not a focus of consciousness. But she had to acknowledge that it was the focus for most other people who met her.
• • •
Taylor van Putten has spondylometaphyseal dysplasia, Kozlowski type, a disease that affects slightly fewer than one in a million people. As is characteristic of the condition, he is relatively tall for a dwarf, at four feet six inches, and does not have the distinctive facial structure shared by people with achondroplasia. Taylor was born at twenty-one inches, eight pounds nine ounces—figures that did not suggest dwarfism. Until his second birthday, he was in the 90th percentile for height. Nonetheless, he had a litany of woes. When Taylor’s mother, Tracey, would move his legs to change his diapers, he would scream in pain, and when he started to walk at about a year old, he was clearly experiencing intense discomfort. He always wanted to be picked up and carried. “Something just wasn’t right,” Taylor’s father, Carlton, said. But neither endocrinologists nor orthopedists could find anything wrong, until, when Taylor was two and a half, his parents brought him to be evaluated by a geneticist at Stanford University, who referred the family to a dwarfism specialist at UCLA, where Taylor received his first real diagnosis.
When I met Taylor at sixteen, he had had four limb-straightening surgeries, he suffered severe back problems, his rib cage was pressing on his lungs, and doctors had recommended that both his hips be replaced. “I’ve been in casts for a total of forty weeks, so that’s almost a year of my life,” he said. He described the gradual revelation that he would be in some measure of pain as long as he lived.
Carlton van Putten’s mother was one of eleven children in a Cherokee family in North Carolina. Her family chose not to join the reservation and were rejected by the Cherokee people. Because they were a family of color, they were ostracized by the white community. They grew up in a house with a dirt floor, which her mother would disinfect with urine. In college, she met Carlton’s father, a black man from the Caribbean. Right after their marriage, Carlton’s father took a job in California. As they traveled across the country, many hotels would not allow them to stay in the same room because he was black and she wasn’t. “My parents’ story prepared me to be father to Taylor,” Carlton said. “My mom walks into this hotel, and to the hotel guy, she’s white. But in her mind, she’s black. Sometimes there’s a big discrepancy between how we see ourselves, and how the world sees us.”
When they received Taylor’s diagnosis, the van Puttens grappled with how to normalize his life. “We were filling our heads with positive-mental-attitude books,” Tracey said. “My main concern was to build his self-esteem. We probably went a little overboard, because he’s borderline cocky. Wherever he went, he would make friends that would real
ly look out for him, like bodyguards. I’d imagined him being stuffed into lockers or garbage cans. It never materialized.” Taylor laughed when he heard that. “The only time I was put in a locker was when I got paid ten dollars to do it,” he said, “and it was worth it.”
Carlton’s work took them east again, and Taylor attended elementary school in the Boston area. He was, in his own words, “school-famous”; his brother Alex told me, “Taylor was a king.” Taylor was strikingly good-looking, and his proportions were not noticeably dwarflike until he was ten or so. “That’s when the staring began,” he said. “It’s the same natural curiosity that makes someone slow down to look at a traffic accident and see if anyone died. Is there any blood? We just have to glance.” The van Putten family moved near San Diego just as Taylor was finishing fifth grade. The transition to middle school wasn’t so bad, but then, when the family bought a place a few miles away, in Poway, they had to switch school districts again. “That was my angry, socially retarded period,” Taylor said. “Everybody’s made their friends by seventh grade. I was just, like, ‘Why should I even try again?’ That’s when I started looking in the mirror and saying, ‘I really don’t like that. Legs: short, stocky, curved, out of proportion. Everything: arms, hands, toenails.’”
After one of his surgeries, Taylor was prescribed strong painkillers. “I realized that I was getting high and I enjoyed it,” he said. “I smoked a lot of weed, took a lot of ecstasy, acid, mushrooms.” Tracey was upset but not surprised. “He was angry at us and he decided he was going to punish us,” she said.
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