Dan Kennedy is not looking forward to his daughter's impending teenage years. He shares the same concerns as many parents -- that his child will be teased for not fitting in, tormented by peer pressure, and robbed of self-confidence. But for his daughter, this is not a phase of life that she'll simply outgrow, quite literally. At age 11, Becky is the same height as an average 6-year-old, and she will never look like her peers. At birth, Becky was diagnosed with achondroplasia, the most common type of dwarfism.
In his illuminating new book, Little People: Learning to See the World Through My Daughter's Eyes, Kennedy, a senior writer for the Boston Phoenix and editor of LPA Online, the Web site for the Little People of America, explores a world that many people overlook. Part family memoir and part cultural inquiry, the book traces perceptions of dwarfism throughout history, shedding light on our society's convoluted reaction to difference.
Little People is brutally honest and intellectually riveting. Kennedy's writing shifts seamlessly from humor to heartbreak, and he's not afraid to disturb his readers. He confronts his own fears and biases as a father while grounding his experience in a society on the verge of eradicating difference through developments in medicine and technology. Child spoke with Kennedy about the book and his concern for a world without otherness.
Q: What was your motivation for writing Little People, and what are your expectations for the book?
A: I was seeking to understand the larger significance of the fact that our child has this physical difference. Becky's just an average kid. But in the larger world, she's obviously different. I wanted to develop a deeper understanding of what dwarfism is about, which is why I related Becky's story to what has happened historically and to what may happen in the future with regard to science and genetics.
I'm hoping that people will get a deeper understanding of the value of human diversity. Diversity is something that gets a lot of lip service in our culture. In reality, I think people fear it. There has always been an impulse to stamp it out, and that will only become greater through genetic screening and perhaps genetic engineering. In that sense, dwarfs stand as cautionary witnesses. We have this human variation that's been celebrated going back to ancient Egypt, and we're on the verge of eliminating that and other differences. The crucial question is, do we know what we're doing?
Q: How would you characterize your daughter's personality?
A: My wife, Barbara, and I have two kids. Our son, Tim, is 13. He is average size, like Barbara and me. Becky is 11, and she is 3'10". Beyond that, it's very difficult for me to characterize Becky in a way that would be different from any other kid. She is very funny. She's involved in Girl Scouts, and she plays clarinet in school. She is extremely outgoing. And, in a way that I think may be good, she is kind of oblivious to the rest of the world.
Q: How do you think Becky perceives her difference?
A: Her whole take on dwarfism at this stage of her life is pretty concrete. There are some things she can't reach, and she finds that frustrating. She knows that her dwarfism sets her apart from others and is something that she can be proud of, but that it doesn't make her better than anybody else and certainly not any worse. That's where we leave things at the moment.
Q: Does Becky talk openly about having experienced prejudice, and what sense does she make of it?
A: We live in a medium-size suburb, Danvers, MA, a town on Boston's north shore. Our neighborhood is a close-knit mix of retired people and families with kids. I feel that she really hasn't met with any prejudice. But Becky's still very young. I have interviewed many adult dwarfs, and almost all of them say that it's the teen years that are really difficult, and Becky is heading into that period now. Her adolescence will be an eye-opener for all of us, and I don't expect that it will be a nice one. There is a lot of peer pressure, and I don't think her difference will ever be more important in the eyes of her peers than it will be when she's a teenager.
Q: Do you think there is anything you and Barbara can do to help prepare her for a difficult adolescence?
A: We are involved in the Little People of America (LPA), and I think that is the most valuable thing we can do. Because of LPA, Becky already knows that there are a fair number of people in the world who look like her and are happy and successful. I think it's important to build that base for when times get tough. Even without any kind of difference or disability, some outgoing kids with high self-esteem end up being unhappy teenagers. That can happen to anybody. I think we have to be especially careful that it doesn't happen with Becky, but there's only so much we can and should do to protect her. Our family and friends don't treat Becky much differently from her brother, Tim. She has to make her own way in the world. We just hope that our home will always be an oasis for her no matter what she may run into outside.
Q: How have the demands of caring for Becky influenced your relationship with Tim?
A: Up to age 3, Becky had serious medical problems. Barbara and I worried about how this would affect Tim because we had to devote a lot more time to Becky and he was still very young. Since her third birthday, I honestly think that they've gotten pretty much equal attention. Tim and I are in Boy Scouts together. I love to hike in the White Mountains, and Tim often comes with me.
Q: What do you think is the greatest challenge in raising a child who is born with a disability?
A: You always have to be your child's best advocate. You often have to assume that you know more, or at least have a better idea of where to find information, than even your child's doctor. You have to advocate for your child in school situations regarding access and special education. At the same time, you have to let your child stand on her own two feet. You want your child to be a strong, independent person even as you are doing things for her that you wouldn't do for a child without a disability.
Q: How do you and your wife manage to strike the balance between helping Becky and being overly involved?
A: We met with Becky's principal before school started to talk about access concerns, and the school put in a lower handrail and made some bathroom accommodations. But we're not a hovering presence. If we're at the supper table and Becky says, "I need a spoon," Barbara or I say, "You know where they are." The other night she wanted to get something out of a pantry cabinet. So she pulls over a chair, climbs up on it, and gets on the kitchen counter. She's standing five feet up in the air reaching, and Tim is going crazy! He's saying, "Becky, let me get it!" And Barbara and I are saying, "Tim, it's all right. Let her get it herself." We think that's an important lesson. She can't expect other people to wait on her.
Q: How has raising Becky changed you? The subtitle of your book suggests that it has given you a richer perspective on life.
A: Being Becky's parent has not been that different from being Tim's parent. But in a broader sense, it has made me more patient, open, and understanding of a wider range of human variation than perhaps I was before. Everyone's unique, and I hope it's taught me to appreciate that more.
Q: You interviewed dwarfs who at times still wonder, "Why me?" Do you ever feel that way about Becky on an individual level?
A: In a perfect world, Becky would be average size. That would have been fine. In some sense, it would have been better than the way things turned out. But I hope Becky's difference will give her certain qualities she might not have had otherwise: a strength of character and more self-awareness than most of us have.
Q: What do you think is the most effective way for parents to teach their children about diversity?
A: The most important thing is to teach them not to fear it. That's not a hard lesson because I don't think kids have a natural fear of difference. Often when children express curiosity about a person who looks or acts different, parents silence them or tell them not to stare, and it becomes this negative experience. It would be better to suggest they walk over and introduce themselves and make it into a learning moment.
Q: What does Becky know about the book, and how will you feel when she's old enough to read it?
A: Becky was 9 and 10 years old when I was writing it, and she knew I was doing a book about dwarfs, or people like her as she would put it. There will come a day when she'll read the book, and I don't know how she'll feel. I hope she realizes it was written out of love and I hope she likes it, but I just don't know. I tried to write it with as much love and respect as I could, and I hope she'll understand that.
What It Is Achondroplasia, the most common type of dwarfism, occurs approximately once in every 26,000 births. In less than 20% of cases, it's inherited from parents who are dwarfs; in the remainder, it's caused by a random genetic mutation.
How It's Detected The abnormal gene that causes achondroplasia was discovered in 1994; this led to prenatal tests that can diagnose or rule out the condition. These are offered only when both parents have the disorder. After birth, it's diagnosed by physical exams, X-rays, and a blood test.
A Common Complication The top of the spinal column can be too small to accommodate the brain stem in babies. Decompression surgery corrects the problem.
Copyright © 2004. Reprinted with permission from the April 2004 issue of Child magazine.