Five men and women tell their courageous stories
THALIDOMIDE. IT WAS THE nightmare drug of more than a generation ago, triggering one of the century’s grimmest medical horror stories. In the late ’50s and early ’60s, in an appalling miscalculation, women in 48 countries—primarily Germany and the United Kingdom—were given thalidomide as a sedative and to quell morning sickness in early pregnancy. In addition to untold miscarriages and stillbirths, the drug was responsible for 12,000 children being born with ghastly deformities: free-floating bones, flipper-like hands attached at the shoulders, missing legs, eyes and other organs. Fortunately, thalidomide had never been approved for sale in the U.S.—Dr. Frances Kelsey, now 82, of the Food and Drug Administration, had been concerned that the drug caused peripheral neuritis in the arms and legs, toxicity that had been denied by its German manufacturer, Chemie Grünenthal. Nevertheless, some Americans were affected by thalidomide, mainly children of American soldiers in Germany. In 1962 the drug was withdrawn internationally.
Now, 35 years later, thalidomide is, remarkably, making a comeback. With appropriate warnings to pregnant women, it is being used around the world, primarily against symptoms of HIV, AIDS and leprosy. In the U.S. its use is restricted mostly to clinical trials, but one small drug company, Celgene Corp. of Warren, N.J., has applied for FDA approval, and another is preparing an application. As the drug-makers push for an okay, PEOPLE spoke to five of the 457 surviving thalidomide children, as they were known, living in Great Britain. Some have built thriving careers and family lives, while others soldier on alone. But all have dealt with their problems with rare courage. Understandably, they remain wary of thalidomide, arguing that it be used only as a last resort. But most share the view of Rosie Moriarty-Simmonds, who recently met two AIDS victims who were using the drug: “I said, ‘Does it help you?’ and one said, ‘Yes.’ So I said, ‘That’s good, then.’ ”
‘If you didn’t read the sign, you’d just say it was art’
People often wonder how Tom Yendell, who was born without arms, can dress himself or brush his teeth. Amazingly adept with his toes and mouth, he has no problem doing either. “There are only two things I can’t do,” he says. “Fasten a top button on my shirt and shake hands.” For Yendell, 34, the real challenges in life are aesthetic—say, whether a dab of titanium white will soften a blue sky or accent the amber of a flower.
Since 1992, Yendell has been director of the Mouth and Foot Painting Artists Gallery, the only exhibit space in Britain dedicated to the works of people who are unable to use their hands. Inside the ivy-clad building, set amid the thatched-roof cottages of Selborne, near Jane Austen’s home in Hampshire, he leans pensively over a canvas, paintbrush held in his teeth. “I do commercial things,” says Yendell, who lives in Holybourne, eight miles away. “Cards, wrapping paper—a lot of Christmas things, like snowmen.”
Playing nearby is his year-old daughter, Holly, who is able-bodied, as are Lucy, his wife, and Joseph, their 6-year-old son. With his teeth, Yendell picks the little girl up by the collar and moves her down the sofa, away from his hot coffee. Lucy, 30, also an artist, assists him with certain tasks, more out of consideration than necessity. “I just do occasional things,” she says, admitting that these include fastening top shirt buttons.
Yendell’s deformity hit his mother, Margaret, hard—for a while. A nurse, “she realized that life goes on, and I’d just have to live without arms,” says Yendell. When he was a child, Margaret and his father, Jack, a baker, bought him cosmetic arms. He delighted in playing “helicopter” with them, whirling around so they would resemble propellers. One day an arm flew off and landed at the feet of an old woman on a park bench. “She nearly had a heart attack,” Yendell recalls. By the time he was 14, he’d decided to forgo artificial limbs altogether: “They cannot replace the complex dexterity of the human hand, and they are never good enough for me.”
Over the years, Yendell made his living by fund-raising for a disabled persons’ charity and as a freelance artist before being hired to run the gallery by the Association of Mouth and Foot Painting Artists, an organization representing 450 painters in 57 countries. “If you didn’t read the sign outside, you’d just say it was art,” says Yendell of his workplace. “And that is what is best about the whole thing.”
‘I walked down the aisle on the arm of my dad’
No, Louise Medus hasn’t hugged her kids today—or ever. “They can cuddle me,” she says of Emma, 8, and Jack, 5, “but I can’t cuddle them.” That may be the most wrenching legacy of thalidomide for Medus, 34, who was born limbless, with tiny hands protruding from her shoulders. But her children seem to have adapted. When Emma’s classmates, as they are wont to do, point out her mother’s deficiency, she has a stock rebuttal. “She says, ‘My mum doesn’t need to cuddle me,’ ” reports Medus. ” ‘She can give me a ride in her wheelchair, which your mum can’t.’ ”
Separated from her husband, John, Medus lives in Cheltenham, Gloucestershire, where she and the children share a converted church hall with one of a long succession of live-in helpers. Her case is celebrated in thalidomide annals because her father, London art dealer David Mason, joined with Ralph Nader in leading the fight to ban the drug and sue for compensation. In 1973 they won a $30 million settlement. Last November—23 years after his efforts proved successful—Queen Elizabeth made Mason an Officer of the Order of the British Empire. Says Medus: “It was 23 years too late.”
The oldest of four children, Medus spent most of her youth at Chailey Heritage Special School and Hospital in East Sussex, where, to her dismay, she was made to wear artificial legs. “They tried to make us look normal,” says Medus, who got rid of the limbs and began using a wheelchair as soon as she left school. “But I don’t regret wearing them, because it gave you the sensation of what it was like to be tall. To be able to smooch with a boy, that was a good enough reason.”
After high school, Medus worked first as a receptionist, then as a computer operator, before quitting four years ago to raise her children. She had met John Medus at college in Leatherhead, Surrey, where he was studying gardening and she was taking business courses. They married in 1987, when Louise strapped on her prosthetic legs one last time. “I walked down the aisle on the arm of my dad,” she says. “It was one of the happiest days of my life.”
The marriage lasted seven years, but the couple split up in 1994. “We are friends now, and I still love him,” Louise says. “But he wasn’t happy with me. He said it was because I can’t cuddle him.”
‘I get a buzz out of working to deadline’
For Heather Clark it was an exhilarating expression of independence. One day in June 1988, 2½ miles over Tock-with, North Yorkshire, she dropped from an Islander plane and parachuted to earth. Clark, who was born with stunted arms, no legs and tiny feet, was belted to the chest of a trained skydiver. But she’d never felt freer, or more exuberantly alive. “The jump was a great catalyst in my life,” says Clark, 35. “It gave me a spur to believe in myself.”
Thus invigorated, Clark vacationed in Greece and fell in love with her Welsh tour guide, Michael Williams. Back home in Leeds, she quit her secretarial job at her father’s firm—which customizes cars for the disabled—and set off with her beau, first touring the U.S. by bus, then jetting to Corfu in Greece. There, the romance ended—but not Clark’s odyssey of self-discovery. After spending two dreary years as a secretary in a Leeds nursing home, she says, “I decided to pursue my dream of working in TV.”
Clark took a yearlong course in the medium, and after three years freelancing, landed her present job as a production coordinator for Yorkshire TV’s magazine show Tonight. “I get a buzz out of working to deadline,” she says. “My real dream is to work in front of a camera.” Clark lives with her helper Sue Walker, 43, and her two cats. But she is fiercely self-sufficient. “I am affected by thalidomide,” she says, “but in no way am I a victim.”
Nor did her parents raise her to be one. Tom Clark and his wife, Christine, balked when advised to place their daughter in a special school. “We said if Heather can’t go to a normal school, then she is not going at all,” says Tom. Clark had to be helped between classes by matrons and older children, even though at 2 she had been fitted with artificial legs. Initially resistant, she says, “I would not go out without them now. Otherwise I would feel really self-conscious.” She uses her hands to operate her 1987 Rover—outfitted by her father—but performs most other tasks with her mouth. “The day I will become disabled,” she says with a chuckle, “is the day I have to wear false teeth.”
‘When I was born, my dad hit the bottle’
Glenn Harrison feels a pang of recognition when he gazes at his 3-year-old daughter, Georgina. Unlike her able-bodied brothers, Jason, 9, and Bobby, 6, she was born with deformities strikingly similar to her father’s: abnormally short legs and pincerlike hands, with two fingers on each. Reportedly, 10 of the 325 offspring of thalidomide children have impairments resembling their parents’, though no genetic link has been clearly established. Harrison, 36, will make no excuses to his russet-haired daughter. “I can’t apologize,” he says. “You have to learn to take it on the chin.”
Harrison met his own disability with the same flinty resolve. The owner of a trucking firm in rural Lincolnshire, he steadies the wheel of his 38-ton rig that he drives with his stump of a right hand while shifting with the lone finger on his left. Since both his legs end near the knee, he works the pedals with prosthetic limbs.
Harrison inherited the company when his father, Colin, died in 1982. “My dad was a bit of a boozer,” says Harrison, the seventh of nine children. “When I was born, he hit the bottle.” Harrison’s mother, Eileen, who died in 1985, was guilt-ridden over Glenn’s deformity. “She was always on nerve pills,” he says. Perhaps as a result, “Glenn was spoilt, and got the attention,” recalls his younger brother Peter, 29. But Peter holds no grudge against his brother. “He has always been there when I have a problem.”
Harrison swept floors before taking over the family firm, which was deep in debt at the time. “The firm collapsed,” he says, “but I paid back every penny.” Harrison then set up another company, which now owns five trucks that haul produce and farm machinery all over Europe.
As a hobby, Glenn used to deejay at weddings and parties. He was working a school dance in 1982 when he met his bride-to-be, 15-year-old Debbie Copland. “He was full of himself, a really outgoing and bubbly person,” says Debbie, now 29. Married 11 years, they share a stone cottage with their kids. Jason and Bobby are avid soccer players—the source of some anguish for Georgina, who is being fitted for prosthetic legs. “When the lads are running around, she gets frustrated,” Harrison says. But recalling his brother’s experience, he’ll play no favorites. “There are three children in this family,” he says, “not one.”
‘My attitude is, what you haven’t got, you don’t miss’
Doctors at Glossop Maternity Hospital in Cardiff, Wales, were mortified. They had just delivered to 18-year-old Mena Moriarty a baby girl who was grievously malformed—with stumps for legs, no arms and two-fingered hands at each shoulder. To spare her young mother the shock, they had the child, named Rosie, whisked away to the nursery ward; three days later, she was at last brought to Mena’s bedside.
“I’ve been told that she unwrapped me and said, ‘Isn’t she beautiful,’ ” says Rosie Moriarty-Simmonds, 36. When one doctor suggested that Mena and her husband, Denis, place their daughter in a home, they were appalled. “It was never an option,” says Denis, a property manager. “My wife [who died in 1992] was very, very determined that Rosie have as normal a life as she possibly could.”
And she has. Though Rosie often endured stares while growing up—and still does—she says the people who know her best “have forgotten I am disabled.” Now a freelance print and radio journalist and a consultant on disability issues, she has been married for eight years to Stephen Simmonds, also 36, a solicitor and fellow thalidomide child. (“I didn’t purposely go out to find a disabled husband,” Rosie says. “It’s just the way it developed.”) The couple met in 1966. Stephen walks on prostheses and Rosie wore them at times, until their wedding day in 1988. “After church I went to the hall for the party and took the legs off,” she says. “If people don’t accept me for what I am, that’s their problem.” In August 1995, after three miscarriages, Rosie gave birth to James, their able-bodied son.
Performing routine tasks, Moriarty-Simmonds—who is also virtually blind in her left eye and deaf in her right ear as a result of thalidomide—is an improviser, using her chin to grasp small objects or dialing the phone with her tongue. “My attitude is, what you haven’t got, you don’t miss, and what you have got, you make the most of,” she says. Clearly, she wasn’t coddled as a child, though her two younger sisters pitched in. “We had to do things for her, but we didn’t think anything of it,” says sister Denise, 29. “Some siblings say they live in the shadow of disability, but it wasn’t like that in our family.”
After attending special schools, Rosie earned a psychology degree at Cardiff University in 1985 and worked as a civil servant for seven years. For fun she sang with a folk group in Cardiff pubs. “Since Mum died, I haven’t sung publicly,” she says wistfully. “Some of the songs remind me of her.” It is one of Rosie’s few concessions to sadness. “We have been blessed,” says her father, “with someone who has given us a sense of how good it is to be alive.”
JOHN WRIGHT in Selborne