IN 1992, Boston Phoenix senior writer and media critic Dan Kennedyís daughter, Becky, was diagnosed with achondroplasia, the most common form of dwarfism. Today she is a happy 11-year-old who likes candlepin bowling and miniature golf. In 2002 ó after being contacted by an agent who had read some of Kennedyís essays about dwarfism and thought there might be a book in the topic ó Kennedy spent a year researching dwarfism and thinking about what being different means in todayís society. The result is Little People: Learning To See the World Through My Daughterís Eyes, published this fall by Rodale Press. The Phoenix recently spoke with Kennedy about his book.
Q: Whatís the story behind the photo on the cover of the book? Itís a very striking photograph of your daughter, Becky, but we donít see her face.
A: I always knew we wanted to put pictures of Becky inside the book. But my wife, Barbara, and I were uncomfortable with the notion of putting a photo of her on the cover. We worried about the effect on her walking into a bookstore and seeing these books with her picture on the cover. I actually tried to get the publisher to do something else. I put him in touch with a photographer who is a dwarf and who takes very evocative pictures of dwarfs, but none of that worked out. So we agreed to use Becky as a model as long as it was okay with her and as long as she would be unrecognizable. So Becky and I went to the photographerís [Tsar Fedorsky] studio one day, and she shot a ton of pictures under lights and with a black backdrop. Afterwards, we were getting ready to leave, and [Fedorsky] suggested we go out into the hallway and she just snapped off a few pictures. I can tell looking at [the photo] that it is one of those almost-throwaway shots, but it is a very evocative cover. Iím very happy with it despite what misgivings I might have initially had about Becky being on it.
Q: Talk about how you learned that Becky was dwarf. Although todayís ultrasounds might detect dwarfism before birth, you and your wife were unaware of Beckyís condition.
A: In fact, Beckyís dwarfism was detected. It was picked up in a late ultrasound; they noticed her head and torso seemed to be further along than her arms and legs. So they were looking right at it, but their interpretation was that they must be getting a bad angle from the camera and we didnít question that. Becky was born as the result of a somewhat uneventful birth. She had inhaled some meconium and was taken to the special-care nursery. We didnít think much about it. That evening a nurse who was working in the special-care nursery at Beverly Hospital told us that the circumference of Beckyís head was well outside what would be normal. Now this was based strictly on a measurement; you wouldnít look at Becky and say, "Gee, thereís really something different here." You really donít with infants. But this doctor told us it might be brain damage or it might be dwarfism. We were shocked by the notion of brain damage, and frankly, the whole brain-damage thing was so emotionally upsetting to us that I have long since forgotten what led to that being ruled out. But that still left dwarfism, and they took X-rays. Becky went home on time, and a day later the pediatrician called and said Becky did indeed have achondroplasia, which was a word that we had never heard before. He called us in, showed us pictures of kids with dwarfism, and told us a little bit about it. We then saw a geneticist, and she confirmed the diagnosis.
Q: And then you went through a period when Becky fell ill.
A: Yes, but that was later. What was kind of odd about the whole thing is that a generation ago, parents were generally given a poor prognosis of children if they were diagnosed with achondroplasia, and we were getting almost the opposite of that. The message we were receiving was almost "no worries," so we spent that fall just adjusting to the idea that Becky did have this difference. It wasnít certainly anything we would have chosen for her, but she seemed like a happy, healthy kid so we were going with that. And then just as she was getting evaluated for why she seemed to have this persistent cold, she got sick with a common respiratory virus that, in her case, nearly killed her. This is when she was five months old. Her doctors told us that the reason the virus was so dangerous to her was because of a rare but not unheard-of complication of dwarfism. Her respiratory passages were very tiny, and it would be a few years before they got big enough for her to be safe on her own. So she needed a tracheostomy and supplemental oxygen. She was in Mass General for two months. When she came home, we had a house full of medical equipment, oxygen tanks, monitors, and home nurses who would come in and stay so we could work and sleep. When you have a baby with a tracheostomy, somebody has to stay up because all kinds of things can go wrong. So from initially getting a pretty positive picture of dwarfism, we were thrown to the depths almost overnight and went through a very difficult and emotional time in our lives, and this went on for two years. Sheís been a pretty healthy kid ever since.
Q: The book is more than Beckyís story. Youíve used dwarfism as a metaphor for difference. Can you talk about that a little bit?
A: Dwarfism, itself, is such a rare condition, I wanted to explain it in a way that a much broader audience could find some meaning in it. One of the things that occurred to me as I was doing the research is that weíre living in a time and place where itís never been a better time and place to be different, whether youíre talking about being an African-American in a majority-white culture, being gay or lesbian, being a wheelchair user, being blind, or being deaf. Itís never easy to be part of a minority culture, but itís better today than itís ever been.
Yet, at the same time, weíre living in a moment when it is increasingly easy to eliminate difference; certain conditions can be screened for prenatally and eliminated through abortion. More conditions will be screened for, and we will reach a point where genetic engineering will allow us to edit out features that we think are less than desirable. And behind the façade of acceptance and celebration of diversity are some pretty tough attitudes about diversity if it comes to oneís own family. My all-time favorite is a study that found that 10 percent of people would choose to terminate a pregnancy if they found out their child would have a genetic predisposition to obesity, which is really just a remarkable finding. It shows how uncomfortable we are with difference. So I wanted to talk about this strange historical moment where weíre soon going to be able to eliminate difference of all kinds. And I wanted to really ask the question: is this a good idea? Even if itís a good idea for an individual ó because if there was actually a cure for dwarfism, we certainly would have given it to Becky ó is it good for the culture as a whole? Are we eliminating something before we really understand the consequences of what weíre really doing?
Q: Since Beckyís birth, the geneticist John Wasmuth discovered the mutation that causes achondroplasia. What has been, or what will be, the impact of that discovery?
A: When Becky was born, they would not have been able to screen for achondroplasia. Today they can; but they donít, itís too rare. Youíre talking about one in 26,000 births. They do screen if you have two people with achondroplasia having a child because there is a one-in-four chance that their child would inherit the dwarfism gene from each parent, which is a fatal condition. The fear, and it is a well-founded fear as itís not that many years away, is that you will be able to screen for the top-100 conditions for just pennies a test, including achondroplasia and other types of dwarfism. Then you would get pressure from medical professionals, pressure from insurance companies that this isnít something you want to go into, itís going to be costly, and they donít want to cover you. So you get this great cultural pressure to eliminate difference. A lot of people in the disability-rights movement believe ó and the dwarf community is a part of that ó that as we move into this brave new world, people need to be educated as to what the consequences of these genetic differences are. People who are told that their child will be a dwarf should be given some opportunity to make contact with Little People of America, possibly to meet other dwarfs and find out what their lives are like, before they make a decision based on a one-sided tale of medical woe.
Q: One of the things you explore in the book is the debate within the dwarf community about whether or not dwarfism should be viewed as a disability.
A: A generation ago, a lot of people in the dwarf community did not like to see themselves as disabled. If you have a person with a less complicated type of dwarfism, like achondroplasia, whose health is good, that person may not appear to be disabled in any way except for being dramatically shorter. But the whole human-built environment is made for people between five and six feet tall. So if you are a dwarf, you may not be able to reach the buttons on an ATM machine, the buttons on an elevator; you canít reach the door handle, the coat rack; you need pedal extenders to drive a car. In that respect, they are very much disabled. And one of the arguments in the book is, if a dwarf canít reach the buttons on an ATM, how is that any less disabled than a blind person not being able to read a screen on an ATM? Itís the same thing. So what the dwarf community and eventually LPA came to realize is that they need the same rights of access as people with any other disability. They need ATMs set at the same height, they need elevator screens that they can reach, and this has really come into being in recent years. The disability-rights orientation is very much a healthy one because the disability-rights movement isnít about demanding special treatment; itís about demanding full access and participation in society. Thatís a good thing for everybody, not just for people with disabilities, but for the non-disabled majority as well.
Q: This book is very introspective, and you ask yourself a lot of tough questions ó about yourself, your beliefs, your values. Coming at this as a journalist, were you uncomfortable with this kind of writing?
A: A certain level of personal writing is not uncomfortable to me. Iíve done it from time to time. But this does dig deeper than anything Iíve done before. My editor at Rodale was always pushing for more, and I was kind of resisting and holding back a little bit. My conception for the book was to tell just enough of our personal story to serve as an anchoring point to get into the more journalistic part of the book ó the research, the interviews, et cetera. My editor, quite rightly, wanted more personal stuff, and that was hard.
Q: What has been the reaction to the book within the dwarf community?
A: I have to say that I was quite nervous about that. I intended the book to be quirky and idiosyncratic, and I wanted to deal with things that interested me. I wasnít trying to do a comprehensive guide to dwarfism, and I thought that some people might be unhappy with it. So far that hasnít happened at all. Iíve really had a tremendous response to it, which is wonderful. I edit the LPA [Little People of America] Web site, and Iíve gotten to know a lot of people, and it would be very painful if any of the people I interviewed and asked to share their lives with me had been hurt by the book, but so far that has not happened. A number of people from LPA have given me reviews on the Amazon site. I think itís easy for a writer to feel like, "Well, Iíve told the truth the way I saw it, if you donít like it, too bad." But the fact that itís been received so well is an indication to me that on some level, I do get it, and they know I get it. And given that they know this subject so much more than I ever will, I find that to be pretty heartening.
Liz Matson is an assistant professor of journalism at Northeastern University. She can be reached at email@example.com
Issue Date: November 28 - December 4, 2003
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