Copyright © 1994 by Daniel D. Kennedy. A shorter version of this article appeared in the November 1994 issue of Northeastern University Magazine.
By Dan Kennedy
Ruth Ricker pulled her aging Chevy Sprint into our driveway. My wife and I watched anxiously from the window as the tiniest adult we had ever seen jumped out, holding a sheaf of papers in one hand and a bag of muffins in the other.
It was Saturday, February 13, 1993. Our five-month-old daughter, Rebecca, had run into medical problems stemming from her being a dwarf. I had called Ricker, the executive vice-president of the Little People of America, looking for some advice.
Ricker, like our daughter, has achondroplasia, a genetic disorder that is the most common type of dwarfism. So when she walked into our kitchen, we paid close attention. This, after all, was our first close-up look at the future.
It was both distressing and reassuring.
Distressing because our vague hope that Becky would grow up to be merely on the very small side of average was shattered in an instant. The top of Ruth's head was only a little higher than my waist; her arms and legs were impossibly short, and her head was slightly larger than it should be for someone of her proportions.
Reassuring because this self-possessed, intelligent woman immediately put us at ease, and made it clear that dwarfism was no impediment to her life. She was militant enough to be an activist in the disability-rights movement, yet at the same time self-deprecating enough to have once played a dwarf in an opera. ("I guess I was a bit typecast," she said, laughing.) And she was an engaging person of varied interests, conversing animatedly about everything from the Red Sox to politics to Saturday Night Live.
Here was someone who was more than a resource. Here was a friend. And a role model for our daughter.
Fast-forward to Thursday, July 14, 1994, to the ballroom of the San Antonio Marriott. It's the final evening of the Little People of America's annual weeklong convention. About 1,000 people, more than half of them LPs (as they often call themselves), have gathered for Mexican food, speeches, and award presentations. It's a formal occasion; many wear tuxes and gowns.
The closing ceremony takes place at about 9:30 p.m., when the outgoing president, Marge Carlisle, hands the gavel to her successor: Ruth Ricker. Eschewing a gown for a simple sundress, Ricker has made one concession to the solemnity of the occasion - she's wearing shoes rather than her customary sneakers. The audience applauds as the two women hug and cry.
For Ricker, it's the culmination of 14 years of honing her leadership and organizational skills. In the summer of 1980, right after her freshman year at Northeastern University, she was elected director of LPA's New England district. She's been a key officer ever since, serving as a national vice-president for six years before running - unopposed - for the top position.
"We'd been preparing for it for so long, so it doesn't stick out in that sense," Ricker says later, characteristically shrugging off her big moment. "Marge and I have been kind of working as a team for the past couple years."
At 34, Ricker is the second-youngest president in the history of the organization, founded in 1957 by the actor Billy Barty. She's also the first president to have literally grown up in LPA: she's been a member since she was six.
Ricker, who graduated from Northeastern's College of Business Administration in 1984, takes over LPA at a crucial time. Scientific breakthroughs in genetics promise to make life easier for little people - and simultaneously threaten their very existence. At the same time, Ricker leads a conservative organization that she believes desperately needs to start addressing larger social issues like substance abuse, racial and ethnic diversity, and making LPA a welcoming place for gay and lesbian little people.
"For many of us," she says, "LPA is the first place we can be comfortable dancing, it's the first place we can be comfortable doing a number of things that in general society people may take for granted. And yet we're not able to offer that to everybody because of ethnic backgrounds, sexual orientation, whatever. Let's talk about it just enough to make the organization more open and welcoming to people on the outside, and to people who are already in the organization and are not comfortable being themselves."
Ricker has long, frizzy brown hair, penetrating brown eyes, and a smile that often curls into playful sarcasm. She stands just a shade under four feet, but if you sit across a table from her she appears to be of average height: achondroplastic dwarfs are of roughly normal size except for their arms and legs.
Like many little people, Ricker revels in her difference. She sits on a couch by lifting one leg onto it, hopping up, turning around, and then plopping herself down. Thus situated, she turns and laughs. Dwarf memorabilia, such as posters and figurines from Snow White and the Seven Dwarfs and The Wizard of Oz, festoon the walls and shelves of her Fenway condo, which is about halfway between Northeastern and BU.
But Ricker, soft-spoken and direct, is serious when she talks about the issues that concern her: boosting LPA's membership (at about 5,000 people, half of them average-size family members, the organization touches no more than 10 percent of the dwarf community); making LPA's voice more prominent on disability rights, health-care reform, and genetic research; and working with doctors to ensure that new parents are told about LPA as soon as their child is diagnosed.
Beth Loyless, the director of LPA's New England district, calls Ricker "real diplomatic, a consensus-builder" who will bring "more political awareness to LPA than we've had in the past."
Adds Marge Carlisle: "This is her time, it's her moment, and she's ready for it."
Ruth Ellen Ricker was born on April 27, 1960, in Calais, Maine, a tiny town on the New Brunswick border. She was the second child and first daughter of George and Wendy Ricker, who were then struggling young school teachers. When Ruth was six weeks old her pediatrician dispatched her and her parents to Bangor, where he wanted them to see a specialist about her allergy to milk. The specialist, though, diagnosed a lot more than an allergy.
"To my mind," recalls George, "he didn't say it in these words, but it was the first freak he'd ever found, and he was all excited about it." George and Wendy later came to believe the pediatrician knew Ruth was a dwarf, but didn't want to be the bearer of bad news. "He let us hate that specialist in Bangor rather than him," George Ricker says, "and he continued to treat us."
In those days little was known about achondroplasia, and the Rickers couldn't believe their daughter would be able to lead a normal life. George remembers a lot of tears being shed during those first few months. Another family doctor, a bone specialist, tried to cheer him up by telling him Ruth might be of almost-normal intelligence and could possibly live to the ripe old age of 25 or 30. Wendy recalls hoping that when Ruth got older, she could live with her big brother, Bill, and work "maybe in the back room of a library." George and Wendy blamed Ruth's problems on the fact that they are distant cousins, and decided not to have any more children. (Actually, their familial ties had nothing to do with it. About one out of every 20,000 children born to average-size couples has achondroplasia, which results from a random mutation. It's impossible for an average-size person to be a carrier, because the defect is always dominant. If you've got it, you're a dwarf.)
But a funny thing happened: Ruth thrived. The Rickers moved to Windham, outside of Portland, in part to be closer to Boston, where Ruth's specialists were. Ruth was smart and, aside from a string of ear infections, healthy (childhood ear problems are common among LPs, and Ricker has undergone reconstructive surgery several times). Still, they weren't quite ready to trust what they were seeing.
When Ruth was six the Rickers learned Little Oscar, the mascot of the Oscar Meyer company and one of the original Munchkins from The Wizard of Oz, was coming to Portland. They'd heard Oscar - Meinhardt Raabe - was active in LPA, so they brought Ruth to see him. Raabe took to Ruth immediately, and he and his wife, Marie, have stayed in touch to this day. More important, he put them in touch with LPA. Soon they were attending their first meeting, at a member's home in Massachusetts.
"There was a baby there, and other than that I was the only child," Ruth remembers. "It was mostly short-statured adults with all different types of dwarfism, some pretty unique-looking. I was aware that I was short, but I didn't see myself as having any unique structures or proportions - which I certainly do, and did even more so at six than I do now. I remember thinking, 'These people are really nice, but I'm not like that.' I didn't see myself looking like any of them."
But as her self-awareness grew, her attitude changed: "LPA quickly became very, very special. You know, it was like the magic of Christmas or Disneyland - just being with these other people, kids and adults, who were like me. And the larger the event, the more significant it was.
"It's somewhat mystical. It's spiritual. It's a closeness that, from my experience, is only akin to relationships that you develop at camp or any other intense situation where you're thrown in with people that you might have something in common with."
For the Rickers, the mourning was over.
The rest of Ruth's childhood was remarkable mainly for how unremarkable it was. Ruth was held back a year in school, which at the time was traumatic because it meant she'd have to wait an extra year to become a Brownie. She now realizes it was for the best, since she was more mature than her younger - and much taller - classmates.
Both of her parents had summers off, and the family took lengthy trips each year revolving around LPA's annual convention. Ruth has been to every one since she was eight, sometimes traveling with the whole family, sometimes flying out with her mother.
After leg-straightening surgery at 15 - a common rite of passage for achondroplastic teenagers - Ruth got her driver's license, which greatly increased her sense of independence. Her parents installed specially made pedal-extenders on their car, and soon she was tooling all over the area. "Because I had access to a car, I could instigate weekend activities, like going to the movies," she says. "Even if the others were pairing off, it was okay, because I was driving. That certainly was - to use a '90s phrase - a very empowering kind of thing."
That feeling of empowerment grew exponentially when she came to Northeastern, which she chose over BU, where Bill was studying, because of its more compact campus and because of the co-op program.
Before graduating from high school, Ruth had little stamina, and Bill and George often took her in the "Rickershaw," a contraption made of tubing and bicycle tires a former student of George's had welded together. Indeed, Ruth tired so easily from walking that she remembers pulling out a ruler and map of Northeastern to determine which dorm was closest to the academic buildings.
Yet before long she was walking everywhere. Bill remembers putting in a shift as a security officer at BU when in walked Ruth and her roommate, whom he was dating. "This blew my mind," he says. "The sister I'd grown up with couldn't have done it." Ruth explains, "My friends and I did so much walking, going to the Christian Science Center, going to the Pru, walking to Cambridge. The little people I know who live in the city, who don't use a car every day, walk a lot more, as I do, and their endurance tends to be more."
Northeastern was a coming-out time for her not just physically, but also socially and intellectually.
She started dating - average-size men on campus, short-statured men through LPA.
She became involved with the Disability Resource Center, which had a strong influence on her career choice: she's a technical-assistance specialist with the Boston branch of the US Department of Education's Office of Civil Rights. "She became active not only advocating for herself, but for others as well. She found her voice," recalls Ruth Bork, assistant dean and director of the center.
Although she started out as a human-services major, she transferred to the College of Business Administration, partly out of admiration for her co-op employer, Edward Willett. At the time Willett was president of the Willett Institute of Finance, a Boston-based school that trains stockbrokers, and a professor at Northeastern. Ricker was so taken with Willett that she even, she says sheepishly, became a Republican, though it wasn't long before she switched back to the Democratic Party. "She turned out to be the greatest worker we ever had," says Willett, who's retired from Northeastern and semi-retired from the Willett Institute. "She became like one of the family. If we need a new president, she's a candidate."
Ricker spent much of her senior year planning LPA's annual convention, which was held the summer of her graduation at Boston's Marriott Long Wharf. "That, along with my co-op and college experience, was the major part of my resume," she says. "I was signing contracts with hotels for functions that served 400 people. It was such a kick, because I was treated like a professional. It was a thrill."
The skills and self-confidence Ricker developed during her Northeastern years have been crucial to her success at the Department of Education. Her supervisor, Louis Meyi, describes her as the ultimate professional, crediting her with accomplishments such as negotiating agreements with college officials on racial and gender equity, resolving a touchy situation involving an emotionally disturbed adolescent, and helping disabled students.
"She is just the consummate employee that you would want in terms of attention to the job," Meyi says, "and also a consummate human being in terms of her empathy and desire to do a whole lot for the human race."
Ricker's first crisis as president of LPA occurred barely a week after she'd returned home from San Antonio. She got a call from Marge Carlisle: scientists at the University of California at Irvine were about to announce they'd located the defective gene that causes achondroplasia.
Little people had long been hoping for such news. Achondroplastic couples have a 25 percent chance of giving birth to a child who inherits the defective gene from neither parent, and is thus average-size; a 50 percent chance of inheriting the gene from one parent, and of being short-statured; and a 25 percent chance of inheriting both genes, a condition that is always fatal. By being able to test for this double-dominant syndrome through amniocentesis, dwarf couples would be able to terminate a pregnancy destined to end in tragedy.
But Ricker was worried, too. Most dwarf babies are born not to LPs, but to average-size couples. She feared what would happen if such a couple were told their child would be of normal intelligence, with generally good health - and would be four feet tall as an adult. After all, some polls show about 10 percent of couples would abort if they learned their child had a genetic predisposition to obesity. This is a society that is profoundly uncomfortable with difference.
Ricker and Carlisle exchanged phone calls and faxes with Irvine, hoping to turn a potentially threatening situation into a public-relations coup. It worked. When the lead scientist, John Wasmuth, announced his findings at a news conference on July 28, several LPA officers joined him at the podium. And his paper, published the next day in the journal Cell, ends with this unambiguous statement: "Other than screening at-risk pregnancies for homozygous ACH [double-dominant achondroplastic] fetuses, any other application of the diagnostic test for ACH mutations should be prohibited."
Still, Ricker has no illusions. Wasmuth guesses that within five years a cheap, effective test will be developed to screen pregnant women for the 100 most common genetic disorders; achondroplasia would be among those 100. By that time, Ricker hopes, LPA and the disability-rights movement in general will be able to get information into the hands of expectant couples so they won't make a decision they'll regret. Although Ricker is a staunchly pro-choice feminist, she says couples are often pressured to make a decision in isolation, with no exposure to the full lives led by people with genetic problems.
As for the future, Ricker knows there may come a time when achondroplasia can be "cured" in utero, through gene therapy. Though she would welcome treatment that would alleviate dwarfism's side effects - the leg and back problems, the breathing disorders, the sleep apnea she suffers from - she's leery about taking it any further.
"To change the dwarfism itself, as in the height - I think it would be hard for many of us, psychologically, to say we'd do that, because it's so intertwined with what makes us us," she says. "It would deny an integral part of myself that I have some pride in. It could be the end of achondroplasia."
Ironically, this threat to the culture of dwarfism arrives at a time when the disability-rights movement has come of age. Today, many disabled people see themselves as members of minority groups who want not a cure, but equal treatment. Deaf activists have been especially militant, denouncing cochlear implants, for instance, as "genocide."
Little people occupy a kind of limbo between the disabled minority and the able-bodied majority (leaving aside for the moment the politically charged question of what constitutes a disability). Unlike people who get around in wheelchairs, or who can't see, or who can't hear, LPs are in full possession of all their motor skills and all their senses. Yet because they look so different from average-size people, they share many of the problems and aspirations of those in the disabled community. This has led both to solidarity and to defensiveness directed against those who would try to "fix" them, or who suggest there's anything about them that needs fixing.
Thus, treatments such as limb-lengthening operations are held in disdain not just because they are dangerous, painful, and highly experimental, but also because anyone who would undergo such an operation - or who would subject his or her child to such barbarism - lacks dwarf pride.
The prospect of gene therapy is different. Ricker understands that most parents would not choose discrimination and medical problems for their children, and would thus not hesitate to undo the gene defect that causes achondroplasia if the treatment were safe, proven, and painless.
But there's a downside. Ricker conjures up the image of a uniform society - a biotechnological Brave New World, in which there are no little people, no deaf people, no one with any kind of congenital disability or deviation from the norm. Take this far enough, and who knows? Homosexuality could be "cured" in utero - thus eliminating one of our most vital cultures. Manic-depression and other mental illnesses could be edited out - along with the creative genius that sometimes accompanies them. In this world, diversity will have been banished just as smallpox was several generations earlier. It's not an attractive vision.
"We'll be losing a lot of people who are different," Ricker says. "And that's a concern - that we lose the variety we have now."
The Rickers moved to a new home in Windham when Ruth was a senior in high school. The window sills are, per George and Wendy's instructions, just one foot above the floor. They say the builder thought they were nuts, but they wanted their dwarf grandchildren to be able to look outside without having to climb on a stool.
Motherhood is never far from Ruth's mind, either. After she serves her two-year term as president of LPA - and possibly one more term after that - she'd like to move on to a new phase in her life. She might go back to school for a master's degree in disability policy. And she'd like to get married, but whether she does or not she plans to adopt a dwarf child.
She leads a full, well-rounded life. Despite her physical ailments and occasional emotional pain - the stares, the rude comments - she says she hasn't wished she were average-size since she was 13 years old. She goes to the movies, she walks her poodle, Bernie ("I meet people I wouldn't have met otherwise. I meet guys, except they're all gay, but hey, I'm meeting guys."), and she goes to Red Sox games with Bill, his wife, Pam Mallory-Ricker, and their young daughter, Louisa.
And she is, wherever she goes, an ambassador for dwarfism. As president of LPA, it's a natural role, but it's one she gets sick of sometimes, too. With a combination of acceptance and resignation, she notes that because her physical differences are so dramatic, it's understandable - if annoying - that people are sometimes overly inquisitive.
Walking amid the lunchtime crowd near Post Office Square, Ricker stands out. While tall folks - who suddenly look much taller than they really are - rush past us, Ricker moves slowly and methodically, hauling herself up and jumping down from curbs and stairs that, for her, are at knee-level. I look for the stares, as I have on other occasions with her. I've never seen any, but I know they must be there. Maybe I have to do what her father used to do, what I'll probably do when my daughter is older: drop back 10 or 15 feet to take in the whole scene, to pick up the whispers, the pointing fingers.
Whenever I try to talk to her about this, Ricker generally offers a few awkward observations, then changes the subject with a one-liner and a laugh. So when she faxed over an article she'd promised to send me, I was surprised to find attached to it four pages of handwritten reflections. In one section, she expands on a story she'd told me earlier over sandwiches in a downtown cafe. It seems she once got on an elevator at the same time as several women and one or two children "who were looking at me, smiling and talking animatedly in a language other than English.
"When I got off the elevator and went into my office," she writes, "I felt as if I was coming home, where people knew me; it was warm and secure. (Coming back to work wasn't normally such a positive deal.) I was surprised I felt so vulnerable. I know on an intellectual level that cultures other than mainstream America are years behind on acceptance. But emotionally it hurt. I guess it was the feeling of being trapped."
Trapped, and continually on public view, never able to hide in the crowd.
"Once in a while," she says, "there will be somebody who asks personal questions who doesn't know me well enough to ask. I mean, I'll answer them. There's something mystical in some people's minds. We're in fairy tales and stuff like that, you know? We're perceived as being cute.
"My self-acceptance is a lot better than many. My opportunities have been great. If I had grown up in a family that was not at all college-oriented, it would have been a lot more difficult, because that is kind of an equalizer for people.
"I don't perceive the staring. If you and I walked down the street, you'd probably see more of it than I do. And as we started to hang out more together, you'd notice it less.
"I've got a relatively thick skin. And being hard of hearing doesn't hurt."