Far From the Tree

by Solomon, Andrew

  Matt Roloff, former president of LPA and father on the popular television program Little People, Big World, said, “My parents didn’t wonder what I would like to do, what kind of woman I’d marry, or how many children I would have. They wondered what I could do for a living, if I could ever marry, and if I could have children.” He is now married to Amy, also a dwarf, and they have four children. Little People, Big World, which ran for almost four years on the Learning Channel, documented the Roloffs’ lives on their farm in Portland, Oregon. The show is somewhat voyeuristic but fairly clear of sensationalism, and it has helped to normalize perceptions of LPs.

  Amy Roloff grew up in a household in which few accommodations were made for her. Friends who came to visit wondered why the phone was positioned where she needed to climb on a stool to reach it. “My mom said, ‘If Amy has to learn to adapt outside of the home, she might as well feel comfortable and learn to adapt within the home.’ Nothing was really tailored to my needs, and that was a good idea, ’cause I’m more independent.” The Roloffs have two average-height sons and one, Zach, with achondroplasia. Amy didn’t want to set up a house that suited the LPs in the family and felt foreign to the average kids, so she kept things “regular.” She encouraged Zach to be both proud of and nonchalant about his dwarfism. “He said one day, ‘Mom, we were playing and the kids were a little too rough.’ I said, ‘Zach, why don’t you be a little grateful that; perhaps, this was a moment where they don’t even think of you as a little person; they’re just hanging out and goofing around with you? That’s a good thing.’”

  This equalizing spirit is extended to all of her children. Jeremy is the eldest and the tallest. “I have to remind Matt that we can’t take advantage of Jeremy because he’s tall. I don’t want him to think that he’s only good in the family ’cause he’s tall.” But even the New York Times, commenting on her children as they appear on TV, described Jeremy as “a gorgeous young athlete who manages the soccer ball with lazy grace,” and his brother Zachary as having “a clever and intense persona.” There’s nothing wrong with a clever and intense persona, but it’s interesting what different vocabulary comes up when the writer is describing, with kind intent, someone with a body that is not beautiful within the conventions of our larger society.

  • • •

  Lisa Hedley hosts her own radio program on NPR and is chief executive of a group of spas. She used to be a ballerina and comes from a prominent New York family; she lives between the city and Connecticut. The film she produced and directed for HBO, Dwarfs: Not a Fairy Tale, is joyous, yet clear-eyed about the difficulties faced by the people whose lives it chronicles. Lisa did not have the wisdom of that film when her daughter, Rose, who has achondroplasia, was born. While Lisa was in the hospital after Rose’s birth, “they gave me a little pamphlet called ‘My Child Is a Dwarf’ and some other materials that showed a photograph of a toothless man cleaning the street, and another photo of dwarfs tending sheep,” she recalled. Lisa decided she would do whatever she could to keep Rose from such conceptions of dwarfism.

  When Rose was two, Lisa wrote an article for the New York Times Magazine, in which she said, “With one word my husband and I became unwitting members of a community whose bonds are not only the natural elations and tribulations of parenthood but also deeply confusing sorrow—a new understanding of random events, a skewed sense of reality. It never occurred to me, not even in my wildest disaster scenarios, that I would have a child different enough to elicit stares and change the way I think about a trip to the store or a walk on the beach. Early on I learned that the way other people react to a child of difference becomes integral to your experience of the world. Perhaps the most important thing about people’s reactions is that they take their cues from me: if I’m cheerful and positive, people are delighted to point out all of my daughter’s special qualities—bright eyes, charming smile.”

  When Rose turned four and developed self-awareness about her condition, Lisa sent her to a child psychologist so she could have a relationship in place if she ran into bumps and challenges as she engaged with the world. “Rose went one day a week after school,” Lisa said. “But she hated it from minute one. She didn’t want to talk about herself. She was almost vicious about it. I realized that we were medicalizing her condition, turning it into something that required treatment, when, in fact, she doesn’t require treatment at all.”

  Lisa has had to balance her relationship with Rose against her relationship with her other three children, two of them older than Rose and one younger. “I’m particularly sensitive to her needs. I neuroticize them,” Lisa said. “Her school did a concert at Carnegie Hall, and she walks out with that funny dwarf gait, going to her seat. I look at my husband, like, ‘Did we forget she’s a dwarf?’ I tend to be shocked all over again and very sad in such situations.” Lisa feels it would be dishonest to pretend otherwise, to herself or to Rose or to the world. “I adore Rose and I can’t imagine life without Rose. I wouldn’t trade her for the world. But I’m very tall; I’m thin; I was a ballet dancer. I imagined those experiences for her. When you have a child who can’t share those things, you mourn the loss of an imagined life. On the other hand, I have an almost violently passionate feeling of who she is.”

  Rose refuses to give audience to self-pity. “She’s very heroic about it, very strong,” Lisa said. “But her battle is so relentless. I’m a private person and I don’t like it. It’s like being a celebrity when you didn’t mean to be. We walk down the street and people go, ‘Hi, Rose.’ She’s always trying to escape it, and she never can.”

  Rose has not identified with other little people, so the family has not been involved in LPA. It’s always difficult to know how much such decisions create an attitude and how much they reflect it. “Support groups and conferences: is this something our family would do under normal circumstances, join any group, go to any organization?” Lisa said. “The answer is decidedly not. I asked Rose, ‘Do you think it would be better if you knew some other little people?’ She said, ‘No, I want to live here in the life I have. I have plenty of friends. I know who I am.’” Lisa has a friend with a short-statured daughter a year younger than Rose. The family is very involved with LPA and returns from conferences with pictures of “really cute teenage little people,” but Rose shows no interest. “The underlying question is to what extent we are fostering denial,” Lisa said.

  There is a cliché that dwarfs are often “feisty” (a particularly noxious word), and myriad articles run under headlines such as “Little Person, Big Personality.” Some of this is just patronizing. Some of it, however, reflects the personality consequences of living as an object of near-universal curiosity. “None of my other children is as tough as she is, nor is my husband, nor am I,” Lisa said. “Rose is very angry. It comes from just having to deal with it all the time.”

  The family arranged life around Rose more than Lisa realized. They had an opportunity to move to London but stayed in the United States because they didn’t want to unsettle her. Rose is a serious athlete, and her passion is riding. “I would never have chosen that for her,” Lisa said with pride. “But my oldest son was a very good horseman, nationally ranked, and she saw that glory. She can tolerate going out into a ring, in front of a judge. She’s competing against average-stature kids, all these cute little girls with pigtails and long, lanky legs, and she still wins awards. She sits up straight and proud. People keep saying, ‘Isn’t that amazing?’ She doesn’t want to be amazing because she’s a dwarf. What she wants is to be judged like the others.”

  Lisa has been called on frequently to be a mentor and has convinced many women to keep their pregnancies after learning they were carrying a dwarf. She has also recommended adoption; she described meeting a family who simply couldn’t deal with the prospect of having a disabled child. “Their older daughter was a cheerleader, and they thought she would be devastated because her ‘sister would be such a freak’; those were the words the mother used. She ended up giving the b
aby away. Her new baby was never going to be a cheerleader in Westchester, so she couldn’t love her.” Another family she met with already had a dwarf child. “That family was economically and demographically very close to us,” Lisa said. “So I thought, ‘This is perfect: the girls can grow up together.’” She was shocked when the parents decided to give their daughter limb-lengthening, a controversial procedure that involves repeatedly breaking bones and stretching muscles. “It was a tough lesson, that just because their daughter is little doesn’t mean we’re going to have anything in common spiritually or emotionally. Five years in and out of wheelchairs. Limb-lengthening really frightens me for medical reasons, and even more because kids are busy forming their identity and who they are at that age. How do people become their best self? Not by constantly trying to change details.”

  Lisa said that, in spite of all her questioning, what had frightened her at first had, at some level, become unquestioned. “I was at Johns Hopkins Hospital for one of her treatments many years ago. I was carrying her on the elevator. This other mother got in with her child, who was drooling and had, clearly, a very profound case of Down syndrome. I was looking at her with total pity, like, ‘Oh, I can deal with mine, but I would not know what to do with yours.’ And that was exactly how she was looking at me.”

  • • •

  Parents can establish a relationship with dwarfism as an identity: travel to dwarf conferences, involve dwarfs in their child’s life, put light switches where they are easily reached by a person of short stature, and refit the kitchen to make it convenient for a little person to cook there. There is a danger, however, that a child who grows up with short stature as a primary identity may feel trapped in a context he never chose. Even if he does not, he will have to face the identity’s inherent limitation. You can elect to associate primarily with people who share your religion, ethnicity, sexual orientation, political convictions, recreational preferences, or socioeconomic status, but there just aren’t enough dwarfs to make an all-dwarf life feasible.

  Parents may prefer to mainstream completely: to persuade their child that being short is not so different from being tall, to encourage him to make friends with other children without regard to height, to say that the tall world is the real world and he will just have to get used to it. But it can be a strain to be told constantly that you don’t really have a disability. Barbara Spiegel described how she would ask her father to hand her a glass from the cabinet. Her mother would say, “You’re quite capable of getting it yourself,” and would insist that Barbara drag a stepladder across the room rather than have the glass handed to her. “Sometimes it was a little extreme,” she said. The idea of being just like everyone else, only shorter, is normalizing, but social context does not always support that normalization, and avoidance of the LP world can come at the cost of considerable isolation. Life often gets tough in middle school and high school; few teenagers of average height will date someone who is three foot six. “Most of the people I found attractive, guy-wise, were exceptionally tall,” Barbara said. “I really didn’t picture myself with an LP. I never imagined that I would marry one—no, two!—LPs.”

  What is right for one dwarf and family may not be right for another dwarf and family, and most families combine elements of various approaches—providing some access to the LP world, making an attempt to put their child at ease in the non-LP world, and availing themselves of medical treatments that respond to their child’s specific needs and desires. The exact nature of the balance differs from household to household. Research indicates that short-statured people generally outscore their parents on measures of overall contentedness, which is to say that parenting a dwarf seems to be emotionally harder than being a dwarf. Another study found that people with achondroplasia were four times as likely as relatives to view their condition as “not serious,” as opposed to “serious” or “lethal.” One’s own identity, replete with problems though it may be, usually looks more tenable than someone else’s identity. Of course disparities of income and education are factors, and it is obviously more of a challenge to support a short-statured child with intellectual handicaps or severe skeletal and health problems than it is to deal with someone who is, in effect, just little. It is interesting to note that those close relatives of dwarfs who perceived the dwarfism as more burdensome for the affected individual were likely themselves to rank lower on inventories of happiness.

  We still fit people into the binary of disabled or nondisabled; we grant those who are officially disabled social assistance, legal protections, and special parking spaces. It’s difficult, though, to delineate where disability sets in. A man who is five foot six might prefer to be six feet tall but is not disabled. A man who is four feet tall faces significant challenges. Many dwarfs experience serious physical disabilities, but even putting aside medical problems, being short has a price. Dwarfism is recognized under the Americans with Disabilities Act (ADA), under which dwarfs are classed as “orthopedically concerned,” but LPA long resisted the classification of dwarfism as a disability, though their position has now changed. No law requires supermarkets to provide a means to retrieve merchandise from high shelves. Legislation does not consistently mandate that gas pumps or cash machines be installed at a height that makes them accessible to little people. The federal government will not pay for adaptive equipment for people who wish to drive but are disabled by virtue of their short stature. Paul Steven Miller, an achondroplastic dwarf who served as commissioner of the Equal Employment Opportunity Commission in the Clinton administration, said while in office, “It’s fair to say that LPA as an organization is not really an active player in the broader disability movement at the national level. But I think that that’s the direction we’re headed in.” That move reflects a shift at LPA, spearheaded by their advocacy chairs Joe Stramondo and Gary Arnold, a generation younger than Miller, to engage with an ever-broadening definition of disability and an ever-broader range of services associated with disability status.

  Rosemarie Garland Thomson argues in her book Extraordinary Bodies that “the ‘physically disabled’ are produced by way of legal, medical, political, cultural, and literary narratives that comprise an exclusionary discourse.” But much of what extremely short-statured people cannot do is determined less by social attitudes than by physical arrangements made by the majority of human beings to suit taller people; the high-minded rhetoric around disability can feel like unwelcome clutter to some dwarfs. One mother of a dwarf worried, “I couldn’t decide whether or not to request a handicapped parking permit. Would our daughter feel stigmatized? At school, should we get special step stools at the toilets? There is a problem of constant accommodation, but should we call it a disability?” The LP actress Linda Hunt once wrote, “Dwarfism, after all, isn’t like cancer or heart disease. It isn’t fatal, and it isn’t even an illness. It is physical, though, and inescapable. You don’t get over it. It is you. But you aren’t it, and that’s an important distinction.”

  The public still lacks a nuanced understanding of the various words used to describe little people. The first meeting of LPA (convened in 1957 as a publicity stunt to benefit the town of Reno, Nevada) was called Midgets of America. The fledgling organization’s name was changed in 1960 to Little People of America so that little people of every description might feel welcome. The word midget, first coined to describe LPs displayed as curiosities, and drawn from the midge, an annoying small insect, is now considered deeply offensive—the LP equivalent of nigger or spic or faggot—and many mothers told me how much they feared that their child would be subject to this appellation. But the general population doesn’t know that midget is an insult, and most people who use the word do so without ill intent. Is the use of an inappropriate word evidence of prejudice if the user doesn’t know that the word is stigmatizing? The most famous small stars of P. T. Barnum’s sideshows were proportional dwarfs, whose bodies have the same relative scale as those of average-size people. The term has frequently been used to
refer to those whose small stature results from a pituitary anomaly rather than a skeletal dysplasia. When the New York Times used midget in an article on its business pages in 2009, there was outcry from LPA, and the Times revised its stylebook. But the term dwarf has its own burdensome associations. Barbara Spiegel has two children with achondroplasia, and she tried to bring them up with a sense of pride in who they are. When her older daughter asked what she should say to the kids in her kindergarten class about her stature, Barbara said, “Say you’re a dwarf.” Her daughter put her hands on her hips and said, “But I’m not make-believe!”

  Betty Adelson, recently asked by journalist Lynn Harris what people of short stature prefer to be called, said, “Most individuals prefer simply to be called by their given names.”

  • • •

  When Rebecca Kennedy was born in Boston in 1992, her doctors feared that she had inhaled meconium (prenatal stool), so she was brought immediately to the special-care nursery. After noticing that her head was rather large and her limbs rather small, one of the doctors announced to Rebecca’s parents, Dan and Barbara Kennedy, that their newborn child probably had “either dwarfism or brain damage.” The prospect of brain damage was terrifying, and so the diagnosis of achondroplasia, made three days later on the basis of X-rays, was an immense relief. The people at the hospital were positive about Becky. “A generation earlier, parents were given a negative view of what to expect,” Dan explained. “We were given a very positive view of what to expect—maybe too positive. We were pretty much told, ‘Things are fine; enjoy her; take her home.’” Dan’s doctors were expressing a shift in attitude that people with disabilities have fought to effect. Most disabilities, however, require accommodation, and doctors do parents no favor if they trivialize the challenges ahead.