The good life within reach
High Point couple, son team up and overcome challenges of dwarfism
By Janice Gaston
JOURNAL REPORTER
Sunday, August 19, 2007

Joyce and Tim Best and their son, Alex, 11, have figured out how to get along rather nicely in a house designed for taller people. When Joyce needs help opening a can (top) because she has trouble gripping things, Alex is right there to do it for her.
Joyce and Tim Best and their son, Alex, 11, have figured out how to get along rather nicely in a house designed for taller people. When Joyce needs help opening a can (top) because she has trouble gripping things, Alex is right there to do it for her. 
(Journal Photo by Jennifer Rotenizer)
 

HIGH POINT - The first time that Joyce Best addressed a group of medical students, she arrived at the lecture hall with her infant son, Alex. She went through the door, and the only thing the students could see was a stroller entering the room, seemingly under its own power.

They couldn’t see her. The fabric back of the stroller hid Joyce, who stands about 3 feet 10, from view.

Joyce is a dwarf. So are her husband, Tim, and their son, Alex. Tim stands 4 feet 3. Alex, at 11, is neck-and-neck with his mother. From time to time, Joyce and Tim speak at Wake Forest University School of Medicine about what it’s like to be a dwarf.

The Bests are experts on coping in a world built for average-size people. They can talk about the things they can’t reach - gas pumps, ATM machines, elevator buttons, slots in vending machines, clothing rods in hotel rooms, brake and gas pedals - and the clothes that don’t fit without being altered. They can talk about the stares and the comments they get, and the situations in which they feel uncomfortable.

They usually shrug off the stares and the comments. But they become irritated when people snap photographs of them. Tim doesn’t like it when people bend down or kneel to talk to him.

“I don’t get angry,” he said. “I just feel awkward.”

“I think they mean well,” Joyce said. “They want to see you eye to-eye.”

Joyce and Tim have given their son enough confidence to stand up, for the most part, to the scrutiny of strangers.

His mother said, “We tried to make him understand that people are just curious.”

But sometimes Alex’s anger gets the best of him when he hears a child make a remark about his parents. He stifles the urge to beat up the kid, he said, but he sometimes balls his hand into a fist that he keeps by his side.

For the most part, though, the Bests say their lives are just like anybody else’s - it’s just that the world isn’t designed for little people.

Joyce and Tim work full time. She works at Hafele America, a hardware manufacturer and distributor; he is a probation officer. They take care of household chores, volunteer at their church, chauffeur Alex, and spend time with friends and family.

Alex loves sports and is proud of his prowess in basketball. “They can’t really get the ball away from me,” he said. He likes to cook, and he wants to be a chef and run his own restaurant some day. If he runs into challenges there, he will, like his parents, no doubt find a solution.

The Bests make things work.

They drive with pedal extenders. They reach counters and cabinets in their kitchen by standing on a removable platform floor. They wash clothes in a front-loading washing machine. They use footstools to reach bathroom sinks.

Joyce, 46, and Tim, 54, usually wear adult-size clothes. Joyce pays $30 to have her dress shoes cut down. She alters everyone’s sports clothes, and they pay a tailor to alter their dress clothes. A tailor removes and reattaches the cuffs on Tim’s dress shirts and often hems them. The process adds $20 to the cost of a shirt.

“Don’t try to stuff him into a boy’s shirt when he’s a man,” Joyce said.

Sometimes, the Bests run into things that aren’t fair. For years, Tim had to take a road test every time he had his driver’s license renewed. Once, when he asked why, the examiner told Tim that he had the right to test anyone whose ability to drive safely he found questionable.

“I think it’s discriminatory,” Joyce said. “If you don’t have a record of having an accident, I don’t see why they should road-test you.”

Claire Stringfellow, 45, has known Joyce since college, where they joined the same sorority. Stringfellow describes her as independent and fun, with a keen sense of color and style.

“Her gifts are great,” Stringfellow said. “She’s organized and committed. The things that make her a friend have nothing to do with her size.”

In college, Stringfellow, who is 6 feet tall, commiserated with Joyce. People gawked at her because she was taller than average. Stringfellow watched with admiration as Joyce figured out ways to deal with problems.

“I thought she was so resourceful,” Stringfellow said. “She couldn’t reach clothes at the bottom of the washing machine, so she would get a wooden spoon and fish them out.”

Stringfellow’s 9-year-old twins, Meredith and Spencer, pal around with Alex. When they were younger, they became confused when they grew taller than Alex. They thought that because they were bigger, they must be older. They learned not to assume that everyone would be just like them, Stringfellow said.

Joyce was born to average-size parents in Cleveland, Ohio. Her condition, diastrophic dysplasia, was caused by a spontaneous mutation of a recessive gene, which both her parents carry.

Until she was born, her parents didn’t know that each child they conceived had a 25 percent chance of being a diastrophic dwarf, a 50 percent chance of being average height and of carrying the gene, and a 25 percent chance of being average height without the gene. Both her brothers are 6 feet tall, and their children are also of average height.

Joyce exhibits typical characteristics of a diastrophic dwarf. Her joints aren’t formed properly, and they wear out easily. She had a pin put in her wrist when she was a baby, and she had a number of surgeries on her club feet when she was a child.

“That allowed me to wear normal shoes,” she said. “Until I was 13, I wore orthopedic shoes with braces.” Her feet are short and wide. She buys children’s athletic shoes in size 11 1/2 for casual wear and women’s dress shoes, size 8 wide, for work.

Many diastrophic dwarfs wind up on crutches or in wheelchairs. Matt Roloff, whose family is the subject of the TV series Little People, Big World, is a diastrophic dwarf who walks with the help of crutches. Joyce’s case is milder than Roloff’s, and she has had both her hip joints replaced.

Without the surgery, she said, she might also be on crutches or in a wheelchair. She can now walk longer distances than before the surgery, and she works out regularly on a treadmill to try to maintain her mobility. But standing for long periods causes pain in her knees and feet.

“I feel blessed I’m as active and as mobile as I am,” Joyce said.

Her fingers lack a second knuckle, so she can’t grasp things easily or make a fist. She can’t reach the credit-card slot at a gas pump because her arms are too short. Tim used to do it for her; now Alex does. She pushes grocery carts backward so she can see over them and asks for help when she can’t reach something on a high shelf.

“The world doesn’t cater to us,” she said. “We need to learn how to get gas, do things outside our comfort zone.”

Joyce learned early that she had to adapt, and her parents didn’t cut her any slack. She had trouble carrying her heavy schoolbooks, so she tried to make the most of her class time so she wouldn’t have to take too many books home. She and Tim bought Alex an extra set of school books so that he wouldn’t have the same problem.

The first step onto the school bus was a big one, and Joyce often dirtied her legs and shoes trying to get a knee up to make it. When she got older and wanted to be taken more seriously, she had to endure people telling her, “Oh, you’re so cute! You’re just like a doll.”

Some even patted her on the head or picked her up, when all she could think was “don’t draw any more attention to me.” People weren’t picking up other 12-year-olds, she said. “There’s an age when it bothers you.” Some dwarfs never get over it.

Joyce’s family moved to North Carolina when she was in high school. She graduated from High Point College and went to work at Rose Furniture in 1983. She and Tim worked together from 1992 until she left last October.

Tim inherited the most common form of dwarfism, achondroplasia, from his mother, and Alex inherited achondroplasia from him. Achondroplasia, which affects 80 percent of all dwarfs, causes fewer medical complications than other types of dwarfism. But Tim has dealt with leg and back pain related to his condition.

Tim didn’t find his size to be that big an issue while he was growing up in western Massachusetts. He knew that he was different, but he always had a close circle of friends. As a teenager, when he went to apply for his first summer job, he interviewed with a restaurant owner, the father of one of his school chums. They talked for a while, then the man told him that the job would require Tim to work at the front of the restaurant, so he couldn’t hire him.

“What would the customers think looking at you?” the man asked.

Tim’s face grew hot. He thanked the man and left, sad and angry. He eventually found a job priming tobacco.

Tim got an undergraduate degree in criminal justice from Westfield State College in Westfield, Mass., and a graduate degree in rehabilitation and counseling from Assumption College in Worcester, Mass. He went to work as a probation officer and worked his way up to assistant chief of the Westfield District Court in Westfield. He has never had trouble with probationers. Once, after he stayed at work late, he offered a probationer a ride home. To get to Tim’s car they had to cut across a basketball court where a group of boys were playing. The boys started making rude remarks, saying things like “Oh, great. We’ve got to move for the midget,” Tim said. Then they came after him. The probationer stood up to the boys, and they scattered.

Tim is now a probation officer for the state of North Carolina. Alex frets when his father’s day runs late.

“My dad’s job is really cool, even though it’s kind of dangerous,” he said. “Some people can be mean. I worry if he’s not home.”

Jeff Johnson, who worked with Tim at Rose Furniture, said, “He’s such a nice guy. Nobody could ever dislike him.” He remembers a time when Tim accidentally opened an office e-mail that contained a virus. “It exploded throughout the building with his name on it. He must have apologized for two months after that.”

Tim never let his size get in the way at work, Johnson said. “When people meet him for the first time, they’re taken aback by the fact he has dwarfism. But he’s the kind of person you forget about it after a while.”

Tim’s height proved to be more of a deterrent to his social life than his professional success. The only time he remembers resenting his height was when he became interested in girls.

“It wasn’t, ‘Oh, why me or anything,’” he said. “It was more of a ‘Gee, if I was taller, I’d have a better chance of dating.’”

Now, he said, “I wouldn’t change anything. Joyce and I wouldn’t have met, and we wouldn’t have Alex. I think the older I get, the more I see where uniqueness is special to me.”

Tim found kinship in his early 20s when he joined Little People of America (LPA). With only 30,000 dwarfs in the United States, he had little opportunity to get to know other little people. LPA is an organization for people 4 feet 10 inches and under whose short stature was caused by a medical condition. For many dwarfs, the group’s annual convention is their only contact with other people like them.

“It’s almost like - and this is so sad - it’s the number one experience for families to go to,” Joyce said. “They save up all their hopes and dreams for something happening for a week. Then they go wild. It’s like a meat market.” For single people, the convention provides one of their best chances to meet other singles.

The convention is a positive, upbeat experience, Joyce said. “The sad thing is it’s very expensive.”

The Bests have dwarf friends nearby, in Kernersville and Greensboro, and when they go to LPA conventions, they catch up with friends they have made at conventions throughout the years.

When Joyce joined LPA, in her late 20s, she was looking for peace and reassurance. She had friends and a social life - she had dated both average-size and dwarf men - but she still had lingering doubts.

“Am I sure I’m OK with me?” she asked herself. When she met Tim at an LPA convention in Baltimore in 1989, she got her answer.

“If I could find another little person attractive, I felt like I had accepted myself,” she said. They met when she was helping delegates register. They made a date the next day. The following night, after dinner, he asked her to step outside. She saw a horse-drawn carriage. A man in a top hat and tails greeted them and swept her into the carriage. As they rode through the streets, Tim turned to her and asked her to marry him.

They had known each other for three days.

She told him, “I can’t say yes, but I’m not saying no.” She asked him to give her six months to make a decision. They burned up the phone lines and “kept USAir in business” as they flew between Massachusetts and North Carolina. Every month, he sent her a dozen roses with a card counting down the months. On Christmas Eve, he proposed again, and she said yes.

Tim moved to High Point the following May, and they were married in October of 1990.

Tim and Joyce both wanted a family, but they worried about Joyce’s ability to carry a baby full term. They knew that their chances of having a dwarf child would be 50-50. Joyce became pregnant in 1995.

“We worried about a healthy child,” Joyce said. “We didn’t worry about whether he would be short-statured or not.” They were OK either way.

The couple received lots of support from doctors who never questioned their decision to have a baby. Joyce, who weighed 85 pounds when Alex was conceived, gained 27 pounds during her pregnancy.

“I rolled everywhere,” she said with a laugh. She worked until two weeks before Alex’s birth, and she carried him full term. He was born by Caesarean section. He weighed 5 pounds, 10 ounces, “a big baby for a diastrophic mom,” Joyce said, and was 17 1/2 inches long. Doctors expect Alex to grow to at least his father’s height.

“He’s the light of our life,” Joyce said. “We were thrilled we were able to have him.” She described her dark-haired son as a well-liked, typical boy who plays hard and does well in school. Alex is outgoing, like his mother, and chivalrous, like his father. He opens doors for women and offers visitors a seat.

Alex helps around the house. But he doesn’t like doing chores, and he admits that he sometimes complains and talks back to his parents. He is sometimes cheeky and usually boisterous.

“Sometimes I can be mature and polite, depending on the day I’m having,” Alex said.

He moves easily between the world he lives in and the world that he enters at LPA conventions.

“A lot of little people out there can’t deal with the little-people world and would be totally freaked out in a sea of little people,” Joyce said. They don’t see themselves as people with big heads and short legs who waddle when they walk.

“They see themselves as different,” she said. “That’s not them.”

Joyce often sees average-size parents go overboard to try to accommodate their dwarf children. They don’t make them do chores. They go into their children’s schools and demand that everything be altered to suit their children rather than encouraging them to come up with their own solutions.

“I don’t say they shouldn’t have accommodations,” she said, mentioning the bench that Alex keeps under the desk that he sits at most of the day. But if a child’s feet have to dangle for 20 minutes from a chair in a lunchroom, for instance, “it shouldn’t be the end of the world.” Alex doesn’t ask for any favors at school, said Linda McGuire, his fifth-grade teacher at Immaculate Heart of Mary Catholic School.

Right before school ended, Alex participated in field day, a series of just-for-laughs competitions. He repeatedly dropped water-filled balloons tossed to him and laughed when they sprayed him. He doffed his shoes and socks to pick up marbles in a kiddy pool with his toes. Before a relay in which kids had to transfer water in cups filled with holes, he discussed techniques with his teammates, then forgot his own advice in the heat of battle. He raced with the streaming cup, his short legs churning like pistons.

In the final event, a tug-of-war, he pulled with all his might, his face twisted into a grimace. When the other team collapsed into a heap, he threw his arms in the air in celebration.

His parents haven’t made a big deal of Alex’s size. They talk about it only when he brings it up. When Alex was 4 or 5, Tim said, he declared that he wanted to join the Army someday. His parents told him he wouldn’t be able to meet the height requirement. “That’s the only time we probably told him, ‘You can’t do that,’” Joyce said.

Alex speaks matter-of-factly about being a dwarf, with the practice of someone who has answered the same questions many times. Questions come from average-size people and from little people.

“People ask me at LPA, ‘What’s it like to be little?’” he said. “They want to see what I say compared to what they feel.”

Alex doesn’t mind innocent questions from children, but he dislikes being badgered by adults. And he so hates hearing the word midget, a word that most dwarfs find offensive, that when a visitor asks him about it, he goes in search of a dictionary so he can write it correctly instead of speaking it out loud.

A dwarf is not a midget. A midget is a person of unusually short stature whose body is in proportion. The term has been so often connected to sideshows and circuses that it has become derogatory.

Alex tells people that he is the way God made him and that he is just like anybody else.

“It’s just the bones are shorter.”

■ Janice Gaston can be reached at 727-7364 or at jgaston@wsjournal.com.