A Different Kind of Disability
Jacqueline Ann Clipsham is a formidable presence. She is a remarkably eclectic woman — a sculptor, a writer, a feminist, a veteran of the civil-rights movement, a disability activist, and a political radical whose bookcase is filled with back issues of Marxist Perspectives. But what sticks in my mind most is her surprising baritone voice, her authoritative demeanor, and her deeply held convictions about subjects ranging from race in America to the cruelties of the educational system in Britain, where she was born and spent part of her youth. I don’t mean to encourage the idea that big is good, small is bad. But Jacki Clipsham is larger than life.
Clipsham, who has achondroplasia, was sixty-five years old when we met at her home in western New Jersey, near the Pennsylvania border. She rode her stairlift down to the front door to greet me. Clipsham lives in a big house back in the woods with plastic pink flamingoes out front. She is three-foot-ten, and gets around with the help of a walker, an electric scooter, and a specially modified van. There’s a sculpting studio in the basement that’s been modified right down to the kiln, which has a door on either side so that she doesn’t have to do too much reaching. I ducked as she gave me a tour. “Some people have to stoop because the ceilings are too low,” she said, watching me. “And I just say, ‘Revenge!’”
I really hadn’t known what to expect; I’d made an appointment with Clipsham because I’d been told she was an interesting person. She was certainly that. As it happened, she also turned out to be the ideal person to talk about the relationship between dwarfism and disability — a relationship that she figured out decades ago and that she complains has taken the dwarf community, and especially Little People of America, all this time to embrace. It’s something that began forming in her mind when she was growing up in the Midwest and learned a life-altering lesson about people who are different.
“One of the interesting and important experiences I had was from the time I was in the second grade, old enough to walk to school, I would be called names, harassed, and made to feel threatened,” she told me. “‘Midget, midget,’ all the usual garbage — mostly prepubescent boys, you know. At this point I noticed that the only other people who had a similar experience were black folks. They were harassed and called names and screamed and yelled at. Later on, I realized that when they got home, there were people like them. When I got home, there was nobody like me. And this was the seed of my political activism.”
In 1964, Clipsham was a young sculptor working in Port Chester, New York, when three young civil-rights workers — James Chaney, Andrew Goodman, and Michael Schwerner — were killed in Philadelphia, Mississippi. Clipsham, who was already a member of the Congress on Racial Equality, or CORE, dropped what she was doing and volunteered at a community center in Sumter, South Carolina. She taught black children to appreciate African art, jazz, and blues — parts of their cultural heritage that they had been told was primitive and unworthy — and helped them overcome terrible nutritional deficiencies by cooking up such delicacies as spinach spaghetti with salami sauce, salami being one of the few meats she could drive down from New York without any refrigeration.
In this kind of work, her disability helped, she told me, since it gave her credibility with kids who were struggling with challenges of their own. Her message to them was, “Maybe you have to do it in a different way, but in one way or another you can do it.” She added, “I think that was an advantage: I wasn’t a regular person. I was shocked, but I learned a lot, and I hope that I opened some doors for those kids.”
Later, Clipsham got involved in the antiwar movement, even taking part in Abbie Hoffman’s memorable attempt to levitate the Pentagon. Eventually, though, the radical politics of the 1960s became corrupted, both without — through FBI infiltration — and within. All these years later, she remains disgusted that when Stokely Carmichael, the leader of the radical Student Nonviolent Coordinating Committee, was asked about the position of women in the movement, he replied, “Prone.” Clipsham returned to making art, teaching at the Brooklyn Museum, and, increasingly, involving herself with disability issues. Among her projects was helping to oversee the design of disability-access symbols for the National Endowment for the Arts, where she was, as she puts it, “the token crip.”
During this time, Clipsham had her first encounter with Little People of America. It was, she said, “a disaster.” She was having trouble parking her van, and she took her case to New York City’s human-rights commission. She decided to see whether LPA could offer any help. “I got the phone number of some people in LPA, some president or something,” she recalled. “Called him up. The guy said, ‘Are you a member of LPA?’ I said, ‘No,’ and he said, ‘Then I’m not talking to you,’ and slammed the phone down.” Later encounters with LPA were no better. She found the members she met to be anti-intellectual, hostile to ideas, more interested in drinking and socializing than in pushing for basic rights.
Clipsham has two broad criticisms of what she sees as LPA’s view of the world. First, LPA historically has not considered dwarfism to be a disability, although that has changed in recent years, as Clipsham herself acknowledges. The second — and something she expresses with quite a bit more vehemence — is what she regards as LPA’s embrace of an identity that is less than fully human. This begins with what dwarfs call themselves. Clipsham despises the word midget, as do most people in the dwarf community. Nor is she crazy about dwarf (she prefers short statured), although she reluctantly accepts it. What drives her over the edge, though, is little people.
“How do you present yourself for a job? How do you present yourself in the world?” Clipsham asked rhetorically. “If you call yourself a ‘little person’ — what self-respecting person calls herself a ‘little woman’? I’ve said, ‘You change your name, I’ll be there.’ It is very significant that you present yourself as an adult so that you can demand to be treated as an adult.” This attitude, she believes, carries over to popular culture, where she sees depictions that infantilize dwarfs still further. She expresses a mixture of horror and contempt at people in the dwarf community who have nice things to say, for example, about Disney’s Snow White and the Seven Dwarfs.
“They had no sex, they’re . . . happy all the time,” she told me. “And they didn’t get to sleep with Snow White. The prince did. What is this? It’s not mental health. And it goes back to what they call themselves, and I think that’s significant. The refusal to take this issue seriously, I think, has implications for the future. It has implications for how people present themselves. And think of the damage they’re doing to these children.”
I’m sympathetic to Clipsham’s views — she is, after all, visualizing a world that will accept my daughter as fully human, fully adult, fully competent, fully equal. But I can’t accept them entirely. Ruth Ricker — who did much to move Little People of America into the mainstream of the disability-rights movement, and for whom Clipsham herself expresses considerable esteem — collects dwarf-related paraphernalia, including toys from the dreaded Snow White. And I’ve heard highly successful people with dwarfism — business people, engineers, artists — refer to themselves as little people without embarrassment, and without any diminution of how either they or others regard them. In a community in which debates over terminology can be outright toxic, little people remains the most widely accepted term.
When Becky was younger and just starting to figure out what it meant to be a dwarf, she loved Snow White and the Seven Dwarfs. But she was confused by the depiction of the little men, telling us that she certainly wasn’t like any of them. Of course not, we assured her. It’s a cartoon. A movie. There are no such things as evil queens, either. That was enough.
Clipsham’s views are valuable for the way they expose the hypocrisy and rationalizations that often underlie the ways we think and about how that affects our behavior. But as Freud once said, sometimes a cigar is just a cigar. And sometimes a cartoon is just a cartoon.
According to the sociologist Erving Goffman, a person who carries a stigma tends to look for people who are even more stigmatized so that he can regard himself as being closer to normal than he otherwise might. “Thus do the hard of hearing stoutly see themselves as anything but deaf persons, and those with defective vision, anything but blind,” Goffman writes. It’s easy to see how this applies within the dwarf community. It is not unusual for LPs (insider shorthand for little people) to see themselves as not being disabled at all — to draw sharp distinctions between themselves and, say, the blind, the deaf, and those who use wheelchairs.
Len Sawisch, the Michigan psychologist who’s also a dwarf, calls this the “thank God” technique: “Thank God you can see, thank God you can hear, thank God you’re not mentally retarded.” There is an intramural aspect to this as well — a kind of LP one-upmanship in which, say, a healthy achondroplastic dwarf will consider herself more fortunate than (and, by implication, superior to) a diastrophic dwarf who uses a scooter and crutches; the diastrophic, in turn, will consider himself lucky in comparison to a woman whose short stature is caused by osteogenesis imperfecta, and whose fragile bones require her to use a wheelchair.
Goffman also writes about how difficult it can be for anyone with a stigma to be treated as — or, for that matter, to behave as — anything other than a stereotype when he’s in the company of “normals,” a phenomenon he calls “minstrelization.” (He quotes another writer, Finn Carling, who in his 1963 book, And Yet We Are Human, says that “the crippled” are expected to act “inferior to themselves,” to “play the part of the cripple,” lest the able-bodied be somehow disturbed and forced to rethink their own sense of identity. Carling continues:
I once knew a dwarf who was a very pathetic example of this, indeed. She was very small, about four feet tall, and she was extremely well educated. In front of people, however, she was very careful not to be anything other than “the dwarf,” and she played the part of the fool with the same mocking laughter and the same quick, funny movements that have been the characteristics of fools ever since the royal courts of the Middle Ages. Only when she was among friends, she could throw away her cap and bells and dare to be the woman she really was: intelligent, sad, and very lonely.
I’m not surprised that Erving Goffman is a favorite of Jacki Clipsham’s, and that Len Sawisch, too, brought up his name without any prompting on my part. Ultimately what Goffman was writing about is the formation of individuality: how we create our identities, and how someone who is not regarded as the same as everyone else can create an identity that is healthy, self-regarding, unique.
The issue of identity is crucial, because it determines how LPs are seen in the world — as dwarfs, or as people with dwarfism. Unlike some parents, who are uncomfortable with the noun and who thus prefer to refer to their LP child has “having a type of dwarfism,” I don’t hesitate to use the label dwarf when describing Becky. But the reason I’m able to make a judgment like that is that I expect Becky to be treated as a person. And, for the most part, she has been, and is. She is a dwarf, and she is a person with dwarfism; to me, the two ideas are synonyms, not antonyms. Still, I recognize that my attitude toward such labeling would not be possible if it were not for some pretty incredible people — people who, unlike me, were never able to take such matters for granted.
The disability-rights movement can trace its roots to 1935, when six members of an organization called the League of the Physically Handicapped staged a sit-in in New York City to protest their exclusion from jobs in the Depression-era Works Progress Administration (WPA). The following year, thirty-five members traveled to Washington, appealing to President Franklin Roosevelt — who was, after all, disabled himself — and occupying the offices of the WPA. In 1937 they returned and, joined by the League for the Advancement of the Deaf, slept on the lawn of the WPA and the grounds of the Washington Monument. By 1938, though, the movement began to fall apart, as its more prominent activists took jobs in government and its remaining members were worn down by critics who claimed that they were communists or communist dupes.
After World War II, disability entered the American consciousness in a serious way. Medical advances meant that disabled veterans not only survived but wished to contribute to society. An important cultural moment was when Harold Russell, a sailor who had lost both of his arms, won an Oscar for his role in the 1946 movie The Best Years of Our Lives. President Harry Truman set up a commission to promote the hiring of disabled people, and public-service advertisements appealed directly to employers: “It’s good business to hire the handicapped. How about making it your business, America?”
But the images of disability that predominated in the postwar era were not those of independent adults making a living. Rather, the disabled child — the poster child, an object of pity and charity — became an indispensable tool for raising funds to prevent others like her from being born. Cyndi Jones, paralyzed from polio, was a poster child for the March of Dimes when she was growing up in St. Louis. She later became the publisher and editor of Mainstream, a disability magazine. She once told the journalist Joseph Shapiro, author of the landmark disability-rights history No Pity, how special she felt when she was dressed up and photographed for the March of Dimes — a feeling that dissipated into tears when, as a first-grader, she and her classmates were handed fliers with a photograph of two healthy children labeled “This,” and a photo of her on her crutches labeled “Not This.” Jones told Shapiro, “The poster child says it’s not okay to be disabled. It plays on fear. It says this could happen to you, your child, or your grandchild. But it says, if you just donate some money, the disabled children will go away.”
Later, the poster child gave way to what is derisively known as the “supercrip” — a disabled person who performs extraordinary physical feats, such as Mark Wellman, a paraplegic mountain-climber, and Terry Fox, who lost a leg to cancer and became famous for running across Canada on an artificial limb. Wellman and Fox obviously deserve the accolades they received, but the underlying message is that the only way the disabled can receive respect instead of pity is to do things that even most able-bodied people would not attempt. Applauding Mark Wellman for pulling his paralyzed body up mountains is a lot easier, and more psychically gratifying, than making sure that city buses can accommodate wheelchairs so that non-mountain-climbing paraplegics can get to work.
By most accounts, the key moment in galvanizing the disability-rights movement — the Selma, the Stonewall, of a new consciousness — came in 1977, when a small but determined group of activists seized on an obscure federal law known as Section 504. Slipped into the Rehabilitation Act of 1973, Section 504 included a provision that prohibited federal agencies and all institutions that received federal money — such as public universities — from discriminating “solely by reason of . . . handicap.”
Hardly anyone noticed that the law had been passed, and neither the president who signed it into law, Richard Nixon, nor his successor, Gerald Ford, was pressed to do anything about it. But Jimmy Carter, during his 1976 campaign, talked about disability issues, and thus raised the hopes of activists. And when he became president, those activists began pressuring Carter’s secretary of Health, Education, and Welfare (HEW), Joseph Califano, to fulfill the promise of 504. The American Coalition of Citizens with Disabilities took over HEW’s San Francisco office, chanted “Sign or resign!” in Califano’s Washington office, and generally made themselves known in a way they had never been known before. At one point they even picketed Califano’s house; Califano later recalled not daring to take his dog out for a walk for fear that his pooch would bite a disabled protester, the ultimate public-relations nightmare. Eventually, though, he agreed to enforce 504 — an enormous victory for disability rights.
One of the leaders of the 504 protest movement was Judy Heumann, whose childhood polio had left her a quadriplegic; she later became an official in the U.S. Department of Education. In an interview with Joseph Shapiro, she explained the new consciousness this way: “Disability only becomes a tragedy for me when society fails to provide the things we need to lead our lives — job opportunities or barrier-free buildings, for example. It is not a tragedy to me that I’m living in a wheelchair.”
The battle over 504 touched off a string of victories that culminated in the Americans with Disabilities Act, or ADA, during the presidency of George H. W. Bush. “Let the shameful wall of exclusion finally come tumbling down,” the president said at the signing ceremony, held on the South Lawn of the White House on July 26, 1990. “America welcomes into the mainstream of life all of our fellow citizens with disabilities. We embrace you for your abilities and for your disabilities, for our similarities and indeed for our differences.” As Bush’s remarks suggest, the ADA represented not just assistance for the disabled, but a new recognition that they are as capable of independence as the rest of society. The images of the poster child and the supercrip were replaced with those of ordinary people who wished to be treated as equal members of society. Rather than seeking charity, they demanded rights.
As has invariably been the case, dwarfs were not seen as part of this new disability consciousness. They were simply seen as being different. During World War II, for instance, little people were hired by the Ford Motor Company to work on the B-24 bomber in Willow Run, Michigan; their size made it easier for them to work inside wings and fuel cells than it was for their average-size peers. Solidarity magazine, published by the United Auto Workers, told their story several years ago and included photos of dwarf workers with Henry Ford, Vice President Henry Wallace, and the flying legend Eddie Rickenbacker.
“The war brought a lot of us out of show business and into factory work,” said Robert Hardy, who as a youth had played the drums in a group called Rose’s Midgets. “The people running the plants discovered that little people could work, just like other people. I’m glad I had that opportunity.” What’s significant about this is not the idea that dwarfs could work in factories, just like average-size people, but, rather, that it took an extraordinary crisis to create an opportunity. They may not have seen themselves as disabled, but society did — as socially disabled, out of the mainstream, safe to shun and exclude. In this way they shared more with women, another group that enjoyed greater job opportunities during wartime, than with other people with disabilities.
Another twist on the ambiguous relationship between dwarfism and disability can be seen in the career of Paul Steven Miller, a lawyer who is well known for his work on behalf of disability rights. Miller, a Clinton appointee to the Equal Employment Opportunity Commission (EEOC), whose term expires in mid-2004, is an achondroplastic dwarf, but his advocacy work has had little to do with dwarfism. Yet Miller learned about dwarfism as a social disability early on: despite graduating near the top of his class at Harvard Law School, he interviewed with forty-five law firms without getting a single offer.
“I was basically told by one of the lawyers at one firm that even though they didn’t have a problem with my size, they thought that their clients would think they were running a circus freak show if I was a lawyer in their firm,” Miller told me. I was so taken aback that I asked if the lawyer had really said that. “Yeah,” Miller replied evenly. “At that time it was before the passage of the ADA, it was before it was really illegal. And people were much less subtle about it.”
Eventually, Miller found work with a law firm in Los Angeles and got caught up in the disability-rights movement when he became director of litigation for the nonprofit Western Law Center for Disability Rights. His most famous client was a television news anchor named Bree Walker Lampley, who had a mild disability known as ectrodactyly, in which the bones of the fingers and toes are partially fused. A person with this condition appears to have webbed hands and feet, although in Walker Lampley’s case it did not so much as prevent her from using a typewriter.
Miller became involved when a radio talk-show host and her ill-informed callers blasted Walker Lampley for becoming pregnant with a child who might also have ectrodactyly. One caller — a Claire from Oceanside — ignorantly ranted, “I would rather not be alive than have a disease like that.” With Miller’s help, Walker Lampley filed a complaint with the Federal Communications Commission, charging that the station had violated the terms of its license by spreading hate. The case ultimately failed, but she and Miller had made their point. And Walker Lampley gave birth to a healthy son who, like her, had ectrodactyly.
Much of Miller’s practice sounds considerably more routine by today’s standards, but it was groundbreaking in the 1980s — architectural access cases, school and job discrimination, suing the California state government and local officials. “It was tremendously exciting for me and the others at the center,” he told me, “because we were just making it up as we went along.”
Miller served on Bill Clinton’s transition team in 1992 and worked as a White House liaison to the disability community until 1994, when Clinton named him to the EEOC, which enforces federal discrimination laws. On the day that I met him, at LPA’s 2002 national conference in Salt Lake City, he had just finished a breakfast meeting with the chief justice of Utah’s state supreme court. That evening, he would become the third recipient — and the first LP — to receive LPA’s Award for Promoting Awareness of Individuals with Dwarfism. Forty-one years old, balding, with owlish glasses, Miller gets around with a cane to relieve his achondroplasia-related back problems.
I asked him about his view of the relationship between dwarfism in particular and the disability-rights movement in general — a nexus where he has spent much of his life. “I think that what is beginning to happen is that the organized LPA community is really linking arms and becoming an organizational part of the greater disability community,” he replied. “I think it’s part and parcel of the identity of LPA changing over the past five years or so, and of LPA having, not an identity crisis, but sort of morphing its identity into something larger than the social club that it may have been a number of years ago. I think 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.” He added: “I think it would be fair to say that I have always really connected the two experiences, both in my mind and my career.”
When the late Lee Kitchens, a young engineer at Texas Instruments, showed up to work one day more than forty years ago, a co-worker approached him with some exciting news. The night before, the dwarf actor Billy Barty had been a guest on the television program This Is Your Life. Barty had told the host, Ralph Edwards, that he was making plans for a 1960 get-together of Little People of America, an organization he had started three years earlier. Barty had hosted that first reception, in Reno, Nevada, under banners that read midgets of america, drawing twenty-one little people from nine states. The name Little People of America was proposed by Barty at the organization’s first business meeting as a compromise that would be acceptable to everyone — that is, to both “midgets and dwarfs,” as the official minutes of that meeting explained.
The 1960 convention — the first since Reno — was to be held in Las Vegas, with free rooms and half-price meals. Kitchens wrote to Edwards in an attempt to reach Barty. But because he had failed to make it clear that he, too, was a dwarf, he received what he recalled as a guarded response. So Kitchens tried again — and this time he got the information he needed. Unlike many of those signing up for the convention, Kitchens was not interested in the dating scene: he was already married. But he and his wife, Mary, who was also a little person (Lee, who was four feet tall, had spondyloepiphyseal dysplasia, or SED; Mary, who died before him, had an undiagnosed type of dwarfism), thought it would be good for their adopted children, both of whom were LPs — or so they thought. Their daughter had achondroplasia, but their son grew to be five-foot-seven. Both have passed away, and Lee Kitchens would describe these tragedies with typical Texas stoicism: “My son developed leukemia when he was forty, and my daughter wound up with a bad heart. Past history.”
It was with some trepidation that the Kitchens family headed off to Las Vegas. “We envisioned a fleabag hotel and a greasy spoon,” Kitchens told me. “We went with the attitude that we didn’t need an organization like that, but it might be great for our kids, because we had grown up without something like that.” Their concern only deepened when they were told that their destination, a hotel called the Hacienda, was out on the edge of town. But when they got there, they discovered that the reason for its out-of-the-way location was that it was the newest hotel in Las Vegas; the owner was a personal friend of Barty’s. There were 143 people on hand — a considerable increase from Reno. And the Kitchenses came across a piece of information that paid for the trip. Lee had been paying an extra premium for life insurance because of his physical difference; in Las Vegas, he met little people who were paying the same rate as everyone else. “I went back and told my agent, ‘You’ve got thirty days,’” Kitchens said.
Though Billy Barty, who died in 2000 at the age of seventy-six, was the founding father of Little People of America, Lee Kitchens was perhaps its most representative member. Barty was an entertainer, one of the few good-paying professions open to dwarfs at that time; Kitchens, though not much younger than Barty (he was seventy-two when I interviewed him), led a life that was far more in line with what LPA has become: a well-educated, professional group, part of the mainstream of American life. And he’d been a leading spokesman for LPA as it made the transition from sideshow novelty to a part of the broader disability-rights movement. Sadly, and quite unexpectedly, Kitchens died in May 2003 at the age of seventy-three. I feel privileged to have had a chance to meet him.
Kitchens was a quintessential Texan, and he spoke in a deep, quiet drawl. Wearing a Western-style shirt, smoking a pipe, and sitting on an electric scooter of the sort that he and his daughter-in-law sold to other little people, Kitchens spent several hours with me, reflecting on his life. He was born into a family of modest means. When he was quite young, a philanthropist paid train fare so that his parents could take him to the Mayo Clinic to repair his cleft palate, a common complication of SED. But other than that, he had what he described as a normal upbringing, with his family heeding their doctor’s advice to treat Lee like any other child. Obviously there was no LPA in those days, and Kitchens told me that he never saw another little person until he was in high school. But the state treasurer of Texas for much of the 1930s was a dwarf named Charles Lockhart. Kitchens’s mother obtained a photo of Lockhart and held him up as a role model.
Lee and Mary met in college. He was an engineering student at Southern Methodist University; she was attending Texas State College for Women. They were introduced through mutual acquaintances after Lee and some of his friends had traveled to the women’s school to do the repairs needed to get their radio station back on the air. “One thing led to another, we had a blind date, and that’s how I met my wife,” Kitchens recalled. “Two years later, after we had both graduated, we got married.”
Kitchens spent virtually his entire career at Texas Instruments, spanning an era of explosive progress. He had a hand in the development of the first generation of transistors, in the early 1950s; and he helped oversee the development of TI’s first calculators, in the 1970s, and first personal computers, in the 1980s. He headed up operations in the Netherlands, Italy, and the Far East. He closed out his career as a professor at Texas Tech University, and he wore a watch whose face was emblazoned with a big “TT.” He also served for a time as the elected mayor of Ransom Canyon, the small city near Lubbock where he lived — a campaign made easier because of his dwarfism. “It was a snap,” he said, flashing his dry sense of humor. “Everybody in town knew who I was. I had name recognition against my opponents. And that is an advantage that little people have. It works the first time. Second time, you have to run on your record.”
Throughout his adult life, Kitchens was heavily involved in Little People of America. He was the first director of District Eight, which includes Texas. He served as national president of the organization from 1964 to 1966, and helped rewrite the bylaws. And he served in a variety of elected and appointed positions, using his computer expertise to set up the organization’s database of nearly twenty-five thousand people with an interest in dwarfism — LPs, average-size family members, doctors, and anyone else who had contacted the organization since 1986. At the time of his death, he was vice president of membership, and he boasted that he hadn’t missed a single national conference since 1960, even though he’d sometimes had to fly overseas in order to attend.
Though Kitchens, unlike Jacki Clipsham, was quite comfortable with the term little person, he did not disagree with her critique of LPA as having distanced itself from the disability-rights movement early on. Indeed, as someone who had been involved almost from the organization’s earliest days, Kitchens, more than anyone, watched — and helped — it grow from a network of mostly entertainers, to a social club aimed at promoting job and educational opportunities, to, finally, an organization whose members understand that they can benefit by forming a common alliance with other disability groups.
In 1978, Kitchens recalled, he represented Texas at a White House conference on disability. After that, activists started the Coalition of Texans with Disabilities — an effort that resulted in such cross-disability efforts as the blind helping the mobility-impaired with their issues, and the mobility-impaired, in turn, helping the deaf.
“That’s how a lot of the civil rights for disabled people have come about, by people working together,” Kitchens told me. “And it took a while for LPA and little people to chime in with that. But there were a few of us that understood that, yeah, we’ve got to work together. We can’t do it all ourselves. Some people took the attitude of, ‘No, we’re not disabled.’ When handicapped license plates first were available, a lot of people said, ‘No, I’m not handicapped.’ But you’re perceived as being that way, and if you’re going to wear the label, you might as well take advantage of it.”
Jacki Clipsham speaks of Little People of America members as being in denial — denial about being disabled, denial about how their disability has affected their lives. The myth, she says, is that dwarfs are just like everyone else. The reality is that their difference — their disability — has affected them, changing their lives, sometimes for the better, often for the worse.
During our interview Clipsham was sitting in a wooden kitchen chair, two pillows behind her, leaning forward, with her right hand pushing on the table in front of her. The effect was of someone who was trying to appear comfortable; she surely was anything but. As she has gotten older, her achondroplasia has made her life increasingly difficult. She’s had five different hip-replacement surgeries. Ten years earlier, she’d had a laminectomy, a procedure to remove pieces of the vertebrae in order to relieve pressure on the spinal cord. Not enough bone was removed, she said, but she was told that the odds were long of a second laminectomy’s being successful. As a result, she’s had to live with it — and has been in constant pain ever since. She can’t reach her higher kitchen cabinets, which are accessible only by a ladder that she can no longer climb. In addition to her pain and mobility problems, she also has a CPAP machine in her bedroom to help with sleep apnea. To Clipsham, the notion that dwarfism is not a disability is insulting.
Yet Clipsham is, if anything, even more attuned to the idea that dwarfism is a social disability. She is first-rate at what she does. She has a master’s degree from the Cleveland Institute of Art, and her work has been exhibited on numerous occasions in such venues as the New Jersey Center for the Visual Arts, Rutgers University, the Cleveland Museum of Art, and the New York Public Library. But Clipsham was never able to get what she really wanted — a tenured faculty position at a university — and, given her qualifications, she thinks the reason is obvious.
“The job I had at the Brooklyn Museum was an adjunct job. All I was ever able to get were adjunct jobs,” she said. “I applied for tenure-track jobs; I was turned down left and right. And I knew there was discrimination. I was up against the wall.” Though Clipsham remains a productive artist, her income is largely derived from a trust that her father set up for her many years ago out of the belief that she would not be able to live independently. “In some respects my father was right,” she said. “It would have been very difficult for me to have supported myself. And I did try.”
I asked her whether she wished she had been born without achondroplasia. It’s a ticklish question. Most adult dwarfs will tell you that they did when they were younger, but that they eventually came to terms with it and now see their short stature as an asset, a part of themselves that they couldn’t imagine being without. Clipsham’s answer was more ambiguous.
“I don’t think I would have half the awareness of people who are less fortunate than I am,” she told me. “I am economically fortunate. I am socially unfortunate.” She paused, then continued. “I should have been a tenured teacher at a university” — and she believes she would have been had she not been born with dwarfism. And at a time when many disability-rights activists speak of “disability pride,” she takes a contrary view. “I’m not either proud or ashamed of my disability,” she said. “It just is.”
When Jacki Clipsham speaks of the denial that many people with dwarfism have about their disability, I wonder whether I, too, am in denial. I don’t think I’ve ever had a moment’s difficulty in accepting that Becky is breathtakingly short, that she waddles, that to people who haven’t spent any time around dwarfs she is — yes — a funny-looking kid. But that’s all cosmetic, surface stuff, the sorts of things that don’t really matter. It’s something else entirely when I tell myself that Becky will probably avoid any major dwarfism-related medical complications, even though one such problem nearly killed her and set back her development for two years. Or that there’s no reason she can’t be a better student, even though constant ear infections — despite the best efforts of Michael Cunningham, her ear-nose-and-throat doctor — have left her with a slight hearing loss and a related learning disability. Or that she can be anything she wants to be, even though I know she’ll face discrimination, ostracization, and, on occasion, mockery.
Becky isn’t just short — she’s disabled. Recognizing that can only help her. To be in denial about the challenges she faces is to settle for less than she deserves as a full and equal member of the culture in which she finds herself.
It just is.