Chapter Thirteen

A Place of Her Own

The dancing begins every night at nine. There’s nothing unusual about the scene: lots of gyrating, lots of strategically exposed female flesh, lots of furtive and not-so-furtive attempts to hook up for a night, a week, forever, whatever. But I see trouble. Big trouble.

You see, this particular dance is taking place at the 2002 annual conference of Little People of America. I’m looking right past the teenagers and twentysomethings who are shimmying the night away at the Marriott Downtown in Salt Lake City. Instead, I’m looking into the future. And I’m as ambivalent about what I’m seeing as the father of any pre-teenage girl would be. Becky is not with me in Salt Lake; I’m here alone for a week of interviews, listening, and learning. But I have no doubt that, in a few years, she’ll be an eager participant in the mating ritual that’s playing out in front of me.

Not that there’s anything untoward going on. But when you’re about four feet tall, as most of these dancers are, with disproportionately short arms and legs, and you don’t move as quickly or as gracefully as your average-size friends back home, the LPA dances take on a certain, shall we say, intensity.

Many of these young people have traveled to Salt Lake specifically to meet members of the opposite sex who are as short as they are. For some, the conference is a way to jam a year’s worth of dating activity into a week. Relationships are formed here, relationships that are sustained by e-mail and outrageous phone bills and, for the fortunate, occasional plane tickets. Marriages between dwarfs often begin at an LPA conference — marriages that can lead to kids and success and happiness forever after. Or to divorce, as they realize, long after the glow has faded, that they have little in common other than being short.

It’s all very normal. But so are a father’s anxieties.

For a dwarf teenager, the LPA dances are the answer to fifty-one weeks’ worth of phones that don’t ring, Saturday nights at home, a nonexistent social life. Barbara and I have not yet been the parents of a teenage girl, never mind one with dwarfism, and we are looking forward to it in the same way that we would look forward to, say, dental work: that is, as something to get through and, presumably, survive. Those with more experience than we say the teenage years can be something of a black hole in the life of an LP. When they’re younger, they’re popular and have plenty of friends. When they’re older, if they’re mature enough and lucky enough, they start building a life for themselves. But during — well, that’s another matter.

Teenagers wouldn’t be caught dead wearing the wrong jeans or the wrong sneakers. Soon Becky is going to learn what it feels like to be wearing the wrong body. What boy wants to go out with the Dwarf Girl, the Midget, the one with the big head and the butt that sticks out, who waddles back and forth and only comes up to his waist? Unless, of course, he wants to take advantage of her and snicker to all of his friends about it. And, no, dating isn’t necessarily an essential part of high school. I never did much, certainly not as much as I would have liked. Neither did Barbara, who attended an all-girls Catholic school. But to believe you’ve been excluded because you look different from everyone else must make it much worse. And it’s not just dating. Once, during a parents’ meeting at an LPA regional conference, we heard from a mother whose daughter’s former best friend — a girl — refused to be seen with her now that they had both reached adolescence. It’s all about image, and this is the age at which the image of dwarfism changes.

Young kids with dwarfism are cute. Teenagers with dwarfism, like adults, can be attractive or not, fat or thin, agile or stiff. But they’re not cute. Rather, they look like a cross between an adult and a child, with a body the size of an eight-year-old’s but with muscles and facial hair, or breasts, hips, and acne. And, except when they’re home with their own families, they spend most of their time with other teenagers, kids who lie awake at night agonizing that their noses are too big, and who — no matter how compassionate they might have been when they were seven, eight, nine years old — suddenly have no tolerance for or understanding of any type of physical difference.

The LPA conference can be an answer to all this. What I worry about is that it can become the answer — an anxiety-laden week that, if it fails to measure up to expectations, can be just as heartbreaking as the other fifty-one weeks. Or more heartbreaking, given that this is where it’s supposed to be different. It must be devastating for kids who meet rejection during the fifty-second week as well. There’s a pecking order within LPA just as there is in society-at-large, and that pecking order favors good-looking, mobile young people with achondroplasia. It’s an open secret within LPA that kids who are more disabled, with more exotic forms of dwarfism, can find LPA to be a fairly inhospitable environment.

And there’s a flip side, just as worrisome and potentially a lot more dangerous. For some teenagers and young adults, the conference is the one place where they drink as much, show off their bodies as much, and have as much sex as their friends back home. All in one week.

As every parent knows, there are many things worse than your child’s being home on a Saturday night.

More than thirteen hundred people have showed up in Salt Lake City during Fourth of July week. It appears that roughly half of them are dwarfs, the other half average-size family members. This is my first national conference. We’ve attended a number of regional conferences, where Becky has practiced her dance moves with her friend Jani Ricker. But this is bigger than any gathering I’ve seen.

At any time of the day or night, the hotel lobby is swarming with little people. The achons predominate, and, since they tend to be the healthiest, with the fewest disabilities, I often see them walking, running, or just lounging around. The second-largest group comprises those with diastrophic dysplasia, who usually undergo numerous orthopedic surgeries from childhood on; many of the diastrophics zip about on scooters to cut down on the amount of walking they have to do. Those with SED can grow to well over four feet, but some are tiny, just three feet tall or less. There’s another group of children here with primordial dwarfism, a very unusual condition with an adult height of well below three feet. And there are many other varieties as well, some that probably have never been properly identified or diagnosed.

Throughout the week, people walk up to me, scrutinize my name tag, and say, “Oh, you’re Dan Kennedy.” My volunteer work with the organization’s Web site, LPA Online, and with the Dwarfism List land me in controversy from time to time, so when these encounters take place I’m sometimes not sure whether to extend my hand or duck. (Of course, in this crowd ducking would just make it easier for someone to punch me in the face.) But the people I meet are remarkably friendly and supportive. A few are surprised to learn that I’m not a dwarf. One person, inexplicably, said he’d expected me to look like Jerry Garcia.

Thus I quickly lost the degree of anonymity with which the Internet had provided me — an anonymity that, in truth, I hadn’t really given much thought to. I had come to learn, and I did. What I hadn’t expected was that, just by being there, I had given others a chance to learn something about the mysterious figure behind LPA’s Internet presence — the “ghost,” as the outgoing president, Leroy Bankowski, jokingly put it at one of the sessions.

Such anonymity is something most little people never experience. From childhood on they are known to all, loved, scorned, overindulged, and laughed at. Many LPs have told me that as far back as they can remember, everyone knows their name.

Here in Salt Lake City, for one week, things are different. They can be just like everyone else.

***

Almost as soon as Becky was well enough to travel for an hour or two, we began attending local LPA functions, sometimes large gatherings at hotels, sometimes small receptions in people’s homes. We hosted one ourselves, too. We’ve been what I would call middling LPA members — more active than some, less active than many, realizing it was important to Becky’s future while at the same time being aware that she often found such gatherings “boring,” a judgment she has never hesitated to share with us or anyone else within earshot.

So why is involvement important? LPA members themselves, especially the active ones, have often told me that it’s absolutely essential for any person with dwarfism, and for their families as well. They speak of the isolation they felt before getting involved — and of the shock they experienced at seeing so many people who looked like them. “I walked in the door and I froze, because I’d never seen so many little people. It was my very first meeting,” said Al Staples, a sixty-six-year-old hospital volunteer and retired jeweler who lives in the Boston area. At four-foot-four, Staples said he also experienced something else for the first time: “I was the tallest of all of them.” Like many LPA members, Staples met his future wife, Celeste, at a meeting. Celeste Staples, who had a medically complicated type of dwarfism called Morquio syndrome, passed away several years ago, but Al remains an active member.

Still, with roughly four thousand dwarf members and another four thousand average-size family members and friends, LPA reaches only about 10 percent of the dwarf community. Some join, find a mate, and leave. But some obviously either don’t need it or don’t want it. LPA is not necessarily a representative sample of the dwarf population. For instance, LPA is overwhelmingly white, which may speak to different attitudes about dwarfism in other ethnic groups. Its members — certainly those who can afford to attend national conferences every year — tend to be professional, well-educated, and affluent. Although it’s hard to know for sure, the organization’s membership base is thought to be disproportionately weighted toward people with achondroplasia, since their relatively good health allows them to be more active. What all this means is that LPA is not the dwarf community but, rather, a certain type of dwarf community. Above all else, members are the kinds of people who think of themselves as a community, which is not a given, but a predisposition, a state of mind. Not everyone, after all, is a joiner.

When I was in high school, I read Kurt Vonnegut’s novel Cat’s Cradle. I only remember two things about it: “Ice-9,” a form of water developed by atomic scientists that freezes at room temperature, and, in the end, destroys the earth; and the made-up word granfalloon, which Vonnegut defines as “a proud and meaningless association of human beings.” A granfalloon, Vonnegut writes, might consist of people who belong to the same religious organization, or who come from the same state, and who are naïve or foolish enough to believe that those coincidental ties are meaningful. Might LPA be a type of granfalloon? I enjoy belonging to the organization, mainly because I’ve met a lot of interesting people I otherwise never would have gotten to know, and because I think it will be important for Becky’s future. It’s a great place to get information about dwarfism. And, obviously, dwarf members who are looking for a mate the same size as they have few other places to turn. But what, really, do LPA’s more than eight thousand members have in common other than being under four-foot-ten — the organization’s rough guideline for membership — or being related to someone who is?

I have heard it said that dwarfs who want nothing to do with LPA are in “denial.” I’m sure that’s true in many cases. Not long after Becky was born, I read an article by a journalist named John Wolin, a middle-aged achondroplastic dwarf who was attending his first national conference. Wolin wrote frankly about his decades of denial, and of the envy he felt for a woman who had agreed to act as his guide: “She was years, a lifetime of self-acceptance, ahead of me.” But surely there must be dwarfs who accept themselves and yet who see no need for LPA — or who accept themselves and their genetic condition in ways that the typical LPA member would find abhorrent.

During my visit to Dror Paley and John Herzenberg’s limb-lengthening clinic in Baltimore, for instance, none of the dwarf kids and average-size parents whom I interviewed had ever been active in LPA. Ah, ha! you might say. They were undergoing painful, risky surgery because they had never accepted themselves or had never been accepted by their parents. But what they told me — what I saw — was that they had accepted themselves in a different way: that they had a genetic condition, a disability, that was hampering their everyday lives. And that they could undergo surgery to lessen the effects of their disability. It was true. That is, it was a truth — not the same truth that you’ll hear at an LPA conference, but a truth nevertheless.

The sociologist Erving Goffman writes that organizations for stigmatized people tend to denigrate those who share their stigma but who choose not to associate with them. “If he turns to his group, he is loyal and authentic; if he turns away, he is craven and a fool,” Goffman says. “Here, surely, is a clear illustration of a basic sociological theme: the nature of an individual, as he himself and we impute it to him, is generated by the nature of his group affiliations.” Which is, I suspect, why some LPA members get so worked up when they talk about people who’ve undergone limb-lengthening. It’s not just that they subjected themselves to a potentially dangerous, unnecessary medical procedure. It’s that they have rejected their group identity — or, rather, the group identity that LPA says they should have. I understand. But I can see the other side, too.

By embracing LPA and letting LPA embrace us, we have adopted certain truths — not absolute truths, but truths that are comfortable for us. That there is a dwarf community. That being part of it is a good thing. That self-acceptance consists of trying to see the positive as well as the negative aspects of dwarfism. And that a person with dwarfism has a difference, not a disease, and is not someone who is broken and must be fixed.

It is only by imbuing LPA with such meaning that the group avoids becoming a granfalloon and instead becomes a living, breathing, growing organism.

***

At the LPA conference in Denver, in 1995, the psychologist Len Sawisch gave a presentation on attitudes about dwarfism. He talked about a time that he had visited a dwarf couple whose home had been completely retrofitted to accommodate their height, right down to the shower head. In such an environment, Sawisch asked, can dwarfism truly be said to exist?

“It was amazing,” he told the audience. “I was still me. My body was still this body. Was I a dwarf in that context? It really became confusing for me, and yet it became clear for me that dwarfism is not a thing, it is a kind of relationship. It takes on meaning only in the context in which we find ourselves.”

In other words, if everyone were between three and four feet tall rather than most people being between five and six feet tall, then there would be no such thing as dwarfs. There would be no doors, coat racks, ATMs, gas pumps, or elevator buttons that would be out of reach. And no one would be suggesting that they were the ones who needed to be changed, rather than the constructed environment being changed in order to accommodate them.

Early on during my week in Salt Lake City, I went out to dinner with Robert Van Etten and his wife, Angela Muir Van Etten. Robert, a fifty-two-year-old rehabilitation engineer, is a past president of LPA; he has SED and is three-foot-five. Angela, forty-eight, is a past president of Little People of New Zealand, her native country. She has an exceedingly rare form of dwarfism known as Larsen syndrome and stands three-foot-four. Like many middle-aged people with dwarfism, their mobility is limited but not entirely absent. Robert rode their wheelchair to the restaurant but told Angela that she could ride it back to the hotel.

Both Van Ettens have been heavily involved with access issues over the years — especially Angela, a lawyer who was appointed during Ruth Ricker’s presidency of LPA to serve on the so-called ANSI Committee, part of the American National Standards Institute. ANSI is a private organization that drafts model accessibility codes. Its codes are not law but are often adopted by government regulatory agencies. The issue is one that has preoccupied her since her youth. In her autobiography, Dwarfs Don’t Live in Doll Houses, she writes of the frustration she encountered in law school in New Zealand, where the elevator buttons were just out of reach:

The law library was on the fifth floor and the lecture rooms were on the sixth. However, the highest button I could reach on the elevator was number four! On the days when I was feeling energetic, I would walk the extra one or two floors, but that wasn’t very often. Otherwise, I would wait for someone to come or use an object such as my pencil case or umbrella to reach the button.

Things are better today, better in the United States than in New Zealand and most other countries, and getting better all the time. But there is still a long way to go. Angela Van Etten told me about her advocacy work during the past decade. It was a long, tangled tale of bureaucracy run amok, but basically what happened was this. When the Americans with Disability Act was signed by the first President Bush, Little People of America was not as involved as it should have been on disability issues, and thus the specific needs of dwarfs were not addressed. Automatic teller machines — ATMs — as well as self-service gasoline pumps were set at no more than fifty-four inches high, which is within the reach of a wheelchair-user with average-size arms but not within the reach of most little people.

LPA undertook a study — actually measuring people at a national conference — and found that forty-eight inches was the maximum height that most dwarfs could reach. After years of agitating, ANSI and the federal government finally went along with a forty-eight-inch height for ATMs, and it is moving in that direction for gas pumps as well. The elevator industry has also proved cooperative, mainly because new computer technology will allow for the installation of just a few buttons on elevators even in very tall buildings, rather than the one-button-per-floor arrangement that is predominant today. The revised standards pertain only to new construction, and it will no doubt take many years before their effects are widely seen. Still, they are a crucial step in the right direction.

“We don’t care how you do it,” Angela told me, describing the ANSI philosophy. “We don’t ask you to lower anything. If you can’t lower it for whatever reason, just provide an alternative. It’s usability that we’re looking for. I’ve actually said this to them: ‘We do not expect the world to get down on its knees.’ It’s a matter of industry will to recognize this population. They generally will not do it unless you make them.”

The concept behind accessibility is something that advocates refer to as “universal design.” The idea is to make facilities accessible to the disabled and able-bodied alike, and to do it in such a way that it not only doesn’t inconvenience the able-bodied but actually helps them. The classic example is curb cuts, which have turned out to be as much of a godsend for parents pushing strollers as for wheelchair-users.

Cara Egan, a thirty-five-year-old former vice president of public relations for LPA who has achondroplasia, wrote her master’s thesis at Johns Hopkins University on LPA’s role in public-policy areas such as accessibility. She was so busy in Salt Lake that I didn’t have a chance to interview her. But I caught up with her at her home near Washington, D.C., several weeks later. At one point I walked up to an ATM to get some money for the parking garage. It was at a comfortable level for me, but barely reachable for her. She asked, “Would it really have inconvenienced you if the machine had been built maybe a foot lower?” Of course not, I replied.

That led to a discussion of one of the principal arguments for limb-lengthening: that it makes dwarfs more functional in a human-made environment built for people between five and six feet tall. “I think that’s bullshit,” Egan said, explaining that such a philosophy assumes it’s the person who should be changed rather than the environment. The beauty of universal design, she said, is that it makes things accessible for everyone. “I was able to get down to the Metro today, park my car, put money in the meter, go down and get a Metro fare card, go downtown, and I didn’t have to ask anybody for anything,” she said. “We have shown that we can do it, so why not do it? We’ve got the creative energy. I think that’s a total cop-out. My mother is five-nine. She goes into the grocery store and there are things that she cannot reach. And she will ask somebody to help her.”

Egan does most of her own grocery-shopping at a store in nearby Rockville, Maryland, that has been redesigned with shorter shelves and smaller carts. “And it’s not like the tall people are staying away, because it’s easier for everybody,” she said. “I just think we’re getting smarter about how things are designed.”

***

As I learned during my time in Salt Lake, there is a certain ebb and flow to a national conference. Mornings are for meetings — parent receptions, discussion groups for people with particular types of dwarfism, LPA business meetings, and the like. Afternoons are less hectic, as families generally leave to go sightseeing; it turned out to be a good time to conduct interviews. Evenings are for events such as the fashion show and the talent show and, on the last official night, the banquet. The talent show was a particular highlight, especially when Bill Bradford — one of three brothers, along with Randy and Dave, with diastrophic dysplasia, all of them holding top LPA positions — did a comedy routine.

“I have a teenage daughter, which I think is worse than having three diastrophic boys,” he said. He told of running into someone who asked, “How long you been short?” His response: “How tall you been dumb?” But the one that brought the house down was about a guy whose pants were hugging his hips and who asked if he could call Bradford “Shorty.” His comeback: “You can call me ‘Shorty’ if I can call you ‘Butt Crack.’”

The LPA conference also coincides with the annual games of the Dwarf Athletic Association of America, or DAAA. A lot of younger people were clearing out every morning to take a bus to nearby West High School, where dwarfs were competing in track and field, soccer, swimming, volleyball, and basketball; a boccie tournament was taking place back at the hotel. Normally weightlifting is a big draw, but Pam Danberg, the president of the DAAA, told me that scheduling problems had forced her to cancel it, as well as table tennis and badminton.

Danberg, a forty-four-year-old achondroplastic dwarf, is herself an accomplished athlete. I’ve seen photos of her throwing the javelin in several LPA publications. Just before the DAAA games she had been appointed to the President’s Council on Fitness and Sports and had been sworn in by President George W. Bush on the White House lawn. She’s also on the board of directors of the U.S. Olympic Committee. Her husband, Scott Danberg, who has hypochondroplasia, is a fitness director at a health resort and a star on the Los Angeles Breakers, a dwarf basketball team.

The main purpose of the DAAA, Pam Danberg told me, is to reach out to dwarf kids, who normally have little chance to play sports with their average-size peers. “A lot of kids don’t get the same opportunity to compete at home on the same level,” she said. “And I try to teach an active lifestyle, especially with an epidemic of obesity in the country. We’re a fast-food, no-movement society. I teach socialization, competition, and fair play.”

I tried to picture Becky at the DAAA games. As you already know, she’s pretty good at miniature golf and candlepin bowling, and she loves to swim and ride her bike, even though she couldn’t keep her balance without training wheels until well after her tenth birthday. But she has never expressed any interest in playing sports with kids her own age. She tried boccie at an LPA regional conference, but the waiting around drove her crazy.

Thus unlike Tim, who plays baseball and basketball and who’s even made the Little League all-star game as a pitcher, Becky’s athletic activity has been pretty much restricted to occasional outings with her parents. Yet we know she needs to be more active and that, given the right context, she’d have a great time. She likes to play catch in the backyard. Once there was a softball clinic at an LPA regional, and she couldn’t get enough. Whether it was her love of the game or her excitement that her friend Jani was there didn’t really matter. For an afternoon, she was running around like any other kid, something she doesn’t do nearly as often as she should.

I’m not much of an athlete, yet physical activity is very important to me, and to Tim. We go bicycling, hiking in the mountains, camping with the Boy Scouts — activities that I think Becky would enjoy, too, if she were physically capable. As with many achon kids, Becky’s weight is a concern, and it would help stave off the possibility of back problems if she were thinner. Like so many other things I saw during my week in Salt Lake, my morning with the DAAA opened my eyes to new possibilities. At home, it seemed that there was just no way of keeping Becky as active as she should be. Here, I began to think that we’d just been looking at it from the wrong angle.

***

Even inside the bubble of the LPA conference — the one week a year when it’s everyone else who’s different — the average-size world can intrude in unexpected, and not entirely welcome, ways.

At the closing banquet there was a performance by a Native American dance troupe, the same group that performed at the 2002 Olympic ceremonies in Salt Lake City. Following the performance came a certified Awkward Moment, when one of the leaders started talking about the role of little people in Indian folklore as guides to the afterlife. “We very much believe the little people are there to protect us,” he said. Another dancer spoke of learning as a child that little people “lived in the forest, they lived in the timber,” adding, “We were always taught these stories . . . that if you ever saw these people, you would share very special blessings.” He then made “an offering to the little people,” presenting a Native American blanket to the outgoing president, Leroy Bankowski, who draped it around his shoulders and smiled gamely.

I probably felt more squeamish about the ceremony than did Bankowski or the little people in the audience. Indeed, a photo of him and the Native American entertainers was later published in LPA Today, the organization’s newsletter. But there’s no getting around, or getting away from, the odd fascination that the outside world has with dwarfs. It’s a fascination that can sometimes take a nasty turn — as I learned from Bankowski’s successor as LPA president, Matt Roloff, a software developer and sales executive from Helvetia, Oregon.

Unlike most of his predecessors, Roloff was something of a celebrity before his election as president of LPA. He and his wife, Amy Roloff, have overseen the development of a scaled-down theme park on their thirty-four acre farm that has been written up in publications such as the New York Times, People, and McCall’s. Matt is also the author of a well-received autobiography, Against Tall Odds. He is driven and relentlessly positive, and he and his large family epitomize the image that LPA likes to project about its members. So I was almost surprised (and no, I shouldn’t have been) to learn that he, too, has his share of horror stories.

“I literally had someone who was very well-educated — he had thousands of people who worked for him, the vice president of a huge corporation that you’ve heard of — admit to me after a three-hour plane ride, ‘When you first came in, I was petrified. I was going to keep my Wall Street Journal open between you and me for as long as possible so I didn’t have to engage with you, because I was scared,’” he told me.

I was startled. Surrounding me was the very picture of normality. Matt, forty, and Amy, thirty-nine, were seated across from me. He’s diastrophic and gets around with a combination of crutches for short distances and a scooter for longer jaunts. She’s achondroplastic. At the next table were their four kids: twins Jeremy and Zachary, twelve; Molly, eight; and Jacob, five. Zach is achon, the rest are average-size. We were chowing down on McDonald’s and Arby’s just an hour or so before they would have to make the thirteen-hour drive back to Oregon. But at the moment, they were relaxed. Or as relaxed as the parents of four kids could manage.

Earlier in the week I had attended a talk Amy gave on “Living with Achondroplasia.” She was funny, straightforward, dynamic. I learned we had something in common: though she had experienced virtually none of the medical problems that sometimes come with achondroplasia, Zach had had a rough time of it. When he was nine months old he nearly died of RSV, the same respiratory virus that had landed Becky in Massachusetts General Hospital. He didn’t need a tracheostomy. But when he was sixteen months old he was diagnosed with hydrocephalus and had to have a shunt surgically inserted in his head. He’s had leg-straightening surgery as well. “I have to admit, I was kind of naïve,” Amy told us. Indeed, even though she and Matt are both dwarfs — and Matt, as a diastrophic, has had repeated orthopedic surgeries since childhood — they were really not much more prepared for the problems that an achon child could run into than average-size parents would be.

And she said something else, something that showed us just how on dwarfs always have to be, how they’re never anonymous, can never blend into a crowd, can never sit and brood and shut out the rest of the world. “There are days when I get tired of being at the mall and just don’t have the time to be polite and talk to everyone who’s curious about my dwarfism,” she said. “Yet I know that if I blow them off, they’ll form a negative opinion not just about me, but about LPs in general. I still try to be polite. If I’m rude one time, then they’ll remember that for life.”

I had to remind myself of where I was before I could process what she was saying. We were several days into the conference, and by this point, after being among hundreds of dwarfs, Amy Roloff looked like an absolutely normal, attractive woman. But outside the hotel? Attractive, yes; normal, no.

Whether the attention is negative, as it was on Matt Roloff’s flight, or positive, as it is when Amy Roloff is just trying to leave the mall and make supper, for crying out loud, it’s always there.

***

If limb-lengthening represents one challenge to group identity, another — and far more common — is what is referred to in LPA circles as a “mixed marriage.”

There was a time when a “mixed marriage” might have referred to a couple with two different types of dwarfism, such as Matt and Amy Roloff. Sort of like the old days, when a wedding between, say, an Irish-Catholic and an Italian-Catholic would be referred to as a “mixed marriage.” Increasingly, though, the term refers to something considerably more dramatic: a marriage between a short-statured person and an average-size partner.

Such mixed marriages have long been a fact of life, of course, but they were not always accepted within LPA. That appears to have changed. The late Lee Kitchens, a founding father of LPA, told me that at one time he believed it was impossible for a mixed marriage to work out. What changed his mind, he said, were Monica and Neil Pratt. She has SED, is two-foot-eight, and gets around primarily by means of an electric scooter. He is precisely three feet taller than she. When I met them in Salt Lake, he was thirty-five years old; she, thirty-seven. They’ve been married since 1989.

I had known Monica for several years, mainly by e-mail and an occasional phone call. She’s the database coordinator of LPA, keeping track of some twenty-five thousand people who’ve been in touch with the organization at one time or another, and I depend on her for the information I need to keep LPA Online up to date. The Pratts live in Lubbock, Texas, near the town where Kitchens lived, and who hired her to take over the database when it was beginning to eat up too much of his time.

Monica and Neil met at Angelo State University, her parents’ alma mater. Their common interest was religion, and they would spend hours talking about the Bible. But their budding romance almost fell apart before it could begin: she went to Europe the summer after they met, and his letters to her never arrived. When she got back, she avoided him. “He caught me one day and said, ‘I want to meet you in the library,’” she told me in her soft, high-pitched voice. “He was, like, really serious, and I thought, ‘Oh, my God, he’s going to tell me he doesn’t want to see me, and why he doesn’t want to see me.’ So I panicked. But I thought, ‘Okay, I can handle this. I’ll go.’”

Neil picked up the story. “I asked her if she would consider marrying me, which I guess kind of blew her away. Because we’d never really dated. We’d just been friends and gone to a lot of Bible studies and eaten at the cafeteria together, and had lots of phone conversations.”

Monica wanted to take things a little slower, and she warned Neil that a life together would not be as easy as he might imagine. “I said to him, ‘You do realize that I have a disability. You do realize that I have dwarfism.’ And you know, he’s like, ‘Yeah, yeah.’ But I told him that when I’m in my environment I can function very well. I have my motorized wheelchair. My schedule was set up so I wouldn’t have problems. The teachers, the students, were all acclimated to my situation. My dorm room was set up so I could reach stuff. But outside my environment I’m pretty dependent. And also, within the environment of educated people there’s not the prejudice and the ignorance. It’s not so prevalent. But I step off that campus and it’s a whole different world. And that’s what I wanted to make sure that he could understand.”

I asked Monica whether she had been at all suspicious of Neil’s motives. “No,” she replied, “because we’d had so many conversations for so long. I had also — I don’t know if this is typical or not, but my parents socialized me, big-time. So I was in Brownies, Girl Scouts, choir, camping, all kinds of activities from age seven. And through that you learn how to gauge people.”

But Monica’s mother, Eloise Wiegand, admitted that she had her doubts. “I told Neil, ‘You just want attention, that’s why you want to marry Monica.’ I thought that was his motive. And that’s that.” She paused, then added, “I like Neil. He’ll do.”

For the past five years Monica and Neil, who’s a high-school science teacher, have run workshops at the LPA national conference for people who are in what they call “interspatial relationships.” They cover such subjects as how to deal with the dwarf partner’s becoming dependent on the average-size partner, how to make a home accessible to both partners, how to introduce the average-size spouse to LPA, and how to introduce the dwarf spouse to average-size family members, friends, and co-workers. “People get over it. There are basic solutions that a lot of people have come to conclusions on,” she said.

After studying the LPA database, Monica has concluded that about half of dwarfs who are married have dwarf spouses, and half have average-size spouses. “It’s smack in the middle,” she said. “But you don’t see that at the meetings. Where are they?” The most likely explanation, she continued, is that dwarfs in mixed marriages are far less active in LPA than those who marry other dwarfs.

Thus Monica Pratt has challenged the dwarf community’s sense of group identity not just by marrying outside of it, but by insisting on remaining a part of it as well. That LPA has accepted her and Neil so readily says something important about how that sense of identity may be changing. No longer is mixed marriage seen as a threat, as negation, as a running-away from or denial of group identity.

***

Fourth of July and, as it’s been all week, it’s mind-alteringly hot in Salt Lake. It’s nearly a hundred degrees and as dry as if it were winter and you’d shut yourself in a tiny room with a couple of electric heaters turned up full blast. I’m at Rice-Eccles Stadium, where LPA has scored a block of front-row-center seats for something called the “Red Hot 4th.”

The show is a weird combination of schmaltz and patriotism. The first act is a band led by Chuck Negron, the oft-rehabbed former lead singer of Three Dog Night, who rips through a surprisingly energetic and loud set of old hits. He’s followed by the alleged headliner, Kenny Loggins, who tries with limited success to rise above his innate flaccidity. We’re also treated to three huge military helicopters zooming overhead and an evangelical group of boy singers called Jericho Road. An elderly war hero angrily leads a recitation of the Pledge of Allegiance, the words “under God” spat out in defiance of “some judge in California,” as a local news anchorwoman who’s emceeing the event puts it.

The show ends with a fireworks display accompanied by the four armed services’ official marches. All in all, a far more militaristic display that I ever would have seen back home in liberal Boston.

The image that stays with me, though, is not of the helicopters, not of the flag, and certainly not of Kenny Loggins. Rather, it is of the aisle next to the LPA section, filled with teenage girls, nearly all of them dwarfs, every one of them beautiful and laughing and waving her arms and swaying back and forth to the music. It is a picture of utter normality, a picture that — no matter how smart and happy and popular they may be back home — would be hard to duplicate anywhere but here.

For one week a year they are surrounded by hundreds of people who look like them. In a culture that places outsize importance on appearance, that’s important — more important than it should be, but not likely to change anytime soon.

And it’s something I’m glad my daughter is part of and can be more a part of as she gets older.

I try to picture Becky in the midst of all this, beautiful not just to us but to others as well. It’s a vision that fills me with hope and longing. I find myself wishing she were here, wishing she could meet these girls and exchange e-mail addresses and get all excited about next year’s conference.

Becky is heading into what may be the most difficult and painful part of her life — adolescence, when easygoing childhood gives way to the all-consuming need to fit in. Already, her blissful obliviousness is giving way to self-consciousness, to embarrassment over those moments when her difference suddenly becomes blindingly obvious not just to her but to those around her.

When I ask her what she doesn’t like about being a dwarf, she is quick to respond that she has to climb on a chair to answer the phone and that she can’t go on the older-kid rides at amusement parks. Yet this is superficial, and when Barbara and I press her, she comes up with deeper responses — of how she got rid of the special chair she used to use in school because it singled her out as being different, of how “bad” she feels when younger kids refuse to believe that she’s older than they. And when I ask her what she likes about being a dwarf, she really isn’t able to come up with anything.

I wish I knew what to tell her. Of course I tell her that there’s nothing wrong with being a dwarf, that she’s just as good and smart and beautiful as anyone else, and that she can be whatever and whoever she wants to be. But this is negation, not affirmation — telling her that her difference isn’t a problem, which is not the same as telling her that it’s a positive good. And she knows it. What’s more, she’s smart enough to know that though I’m certainly not lying to her, I am gilding the lily.

One day I asked her if she thought she would get married.

“Uh, yeah,” she replied. “First I have to find a husband.”

When I asked her whether she thought she would marry a “tall” man or a dwarf, she immediately replied that he would be a dwarf.

How come?

“So he’s as short as me.”

Is that important?

“Uh, yeah. Because tall people don’t marry a short person.”

Well, sometimes they do.

“A tall person marrying a short person? That doesn’t make sense.”

Then I asked whether her children would be dwarfs or not.

“Dwarf.”

Yeah?

“Because I’m a dwarf. Yeah.”

Would that be good?

“Yes.”

How come?

“Because when they grow up, they’ll be the same size as me.”

Now, you’re their mother —

“Well, I’m not a mother yet.”

I understand. You’re their mother, they come to you and they say, “I don’t like being a dwarf. I want to be tall.” What would you tell them?

“I’d tell them, you can’t. You’ll never be as tall as a tall person. You’ll always be short. And no matter what happens, I’ll always love you. How’s that?”

That’s really good, Becky.

“And lovely?”

Yes.

Shall I leave it there? I could. It’s got a nice happily-ever-after ring to it, doesn’t it? But there’s more.

Do you think that’s what they’d want to hear, or do you think they’d be sad to know that they would never grow tall?

“Happy?”

Don’t ask me. What do you think?

“I think that they’ll be sad.”

How come?

“Because they won’t be able to reach stuff and I’ll have to help them, and they won’t be able to go on big rides that they like. So that’s why they’ll be sad.”

So we were back to that. I began to realize that her constant recitation of those two themes was more profound that it seemed — that it spoke to her own unhappiness about being a dwarf, an unhappiness that she already assumes she will pass on to her children. I honestly don’t think she dwells on this much; she is essentially a cheerful kid brimming with self-esteem. But there’s more to her than that, too, and it’s a side of her that I need to recognize and respect. Her heartwarming answer about what she would tell her children was tinged with heartbreak as well.

We all need community. We all need a place of our own. I think we can understand that intellectually, but on that night in Salt Lake City I came to know it in an emotional, visceral way. Becky needs a place where no one — or everyone — needs a stool. Where no one has to stand and watch while their taller friends whoop it up on the big-kid rides. And where they’ll see that they can grow up to be parents whose own children’s lives will be just as full and happy as those of their average-size peers.

Here, Becky would be just like everyone else. Her dwarfism is just one part of her, and not nearly the most important part. But convincing the world of that will be a lifelong challenge. Every so often she needs to have a chance to relax and be herself and not have to explain. To look around and see her own growing sense of self-awareness reflected in the broad, flat faces and short arms and legs of those around her. To understand that she is an individual, but that she is also part of something larger than herself; that she has her own identity and a group identity, and that both are part of who she is. For one week a year, this is where she belongs.

Even if I do worry about those dances.

< Chapter Twelve | Contents | Acknowledgments >