Topics: Life News
When my daughter LilyClaire was born with a form of dwarfism called achondroplasia eight years ago, I was frantic with the need for information. I devoured clinical texts, memoirs, fairy tales and history books, as if the only way I could fathom my child living with this otherwise mysterious condition was to obtain as much knowledge about it as I could. Among other things, I learned that dwarfism occurs as a result of a genetic mutation in 1 out of every 10,000 to 40,000 live births, that most dwarfs are between 4 feet and 4-foot-4, and that they have short limbs, large heads and average-size torsos.
I got closer to understanding the emotional aspects of dwarfism through writing an article for the New York Times Magazine, and making a documentary film for HBO called “Dwarfs: Not a Fairy Tale.” The research that went into these projects equipped me with facts that helped me parent my dwarf child, but perhaps more significantly, all of the processing showed me that having a child who is different was not the dire, unmanageable reality I had imagined it might be.
Had “Little People: Learning to See the World Through My Daughter’s Eyes,” by Dan Kennedy, existed when my daughter was born it would have saved me months of research and hours of soul searching. In the book, Kennedy, the media critic for the Boston Phoenix and a Salon contributor, explores the emotional and practical meaning of having a child who is different. He ponders dwarfism’s status as a disability, and introduces “little people” individually, from a successful doctor who played high school baseball to a Harvard-trained lawyer to his own daughter, Becky, who was born with dwarfism 11 years ago.
I spoke with Kennedy recently about the disability rights movement, limb-lengthening surgery and the role of dwarfs in the Holocaust.
When did you first find out that Becky was different?
When Becky was born the doctor told my wife that the circumference of Becky’s head was off the charts, and that they suspected brain damage or dwarfism. Well, the notion of brain damage was so frightening that dwarfism sounded a lot better. About 10 days later we saw a geneticist who confirmed the diagnosis, sat us down and said something like, “I want you to know there was nothing you could have done.”
How did that statement affect you? It’s so striking the things people say without thinking about how it sounds to new parents struggling with this kind of news.
It really shocked us. I was momentarily stunned when I realized she meant that Becky’s achondroplasia could not have been picked up through amnio, and that therefore we shouldn’t feel that we had lost a chance at abortion. It certainly struck me as inappropriate, given that we were sitting in her office with a healthy, normal-looking baby.
You use the term “little people” in your title. Is that the proper way to refer to dwarfs now? And is the term “midget” offensive?
“Little person,” as I explain in my book, is probably the most broadly accepted term to describe someone with dwarfism, although many people I know find it to be too cute and euphemistic. These people, who tend to be younger and more politically aware, prefer “dwarf.” The word “midget” — a made-up word dating only to the 1860s — is considered offensive by most people in the dwarf community today, probably because it is inextricably tied up in the notion of putting dwarfs on public display.
In ancient Egypt the God Bes was depicted as a dwarf, and in the 17th century the painter Velasquez painted several important works that included the dwarfs of the royal courts. Today we have TV programs like “Carnivale” and movies like “The Station Agent” that feature dwarfs. Why the fascination with the culture of dwarfism?
Dwarfism is a disability with a difference. That is, if you get a person who has dwarfism but who doesn’t really have any of the medical complications that sometimes go with dwarfism then they do not appear to be disabled in any way.
So why treat dwarfism as a disability at all?
It’s more of a social disability; it’s really not a physical disability. It’s almost like dwarfs belong to a different race or a different type of human. And I think that people are drawn to, and fascinated by, that difference. One of the interesting things about dwarfism is that people in the dwarf community themselves were very loath to define themselves as being disabled until recent years.
What changed?
It became a political matter. One of the things that woke up the Little People of America (LPA) — a nonprofit organization that provides support and information to dwarfs and their families — was when they realized that they had been cut out of the drafting aspects of the American With Disabilities Act (ADA). An example I talk about in the book is that the ideal height for ATM machines, something it was hoped would eventually become law, was 54 inches, which is the right height for a person in a wheelchair with average-length arms. But LPA measured and found out that the best measurement for the vast majority of dwarfs was 48 inches.
Because of their short limbs.
Right. So LPA got more involved in disability rights issues and the guidelines were lowered to 48 inches. More important is that while there are some 50 million people with disabilities in this country, there are only 30,000 to 50,000 people with dwarfism. If dwarfs are going to be off in their own small community, they’re not really going to get anything done. But making common cause with others can help to make this a more inclusive society and the needs of the dwarf community get met as well.
Do you think that it’s good or bad for little people to consider themselves disabled?
I think it’s a good thing because the politics around the Disability Rights Movement are healthy. It’s very much a movement about empowerment, not pity.
The LPA hold regional meetings and a yearly national conference where little people from all walks of life can get together socially, discuss issues and see doctors and other experts. I have been to meetings where I found not only practical information on raising a dwarf child but also emotional support from the community. What is the social significance of an advocacy group like LPA and how did you get involved?
We found out about LPA, which has about 8,000 members, almost as soon as Becky was born. LPA is important because dwarfism is so rare that without some way of getting together with other dwarfs occasionally, I think a little person could go decades without meeting another person with dwarfism.
In the book, you write about how some people, after waiting a long time to go to an LPA conference, finally get there and are in denial. They feel like, “Well, that’s not me, I don’t look like that.” And then you write about the dating and social scene, which can be quite intense.
That’s right. Many dwarfs think that they are just like everyone else but short. Well, they’re not just short, they are actually very different. LPA gives dwarfs an opportunity to see that there are other people like them and they are successful and happy and getting on with their lives. Also, because of the simple fact that people tend to want to settle down with people who look like them, LPA is the place where many little people form relationships. Certainly there are many dwarfs who have never had any contact with LPA. And in some ways that works out fine. But in other cases the isolation and the feeling that this difference is a negative thing leads them to search out such things as limb-lengthening surgery.
That’s a tricky issue, and one I dealt with in my documentary. Limb lengthening requires a series of surgeries that involve cutting leg and arm bones, constructing metal frames around the limbs, and inserting pins into the bones to move the cut ends apart. New bone tissue fills in the gap and increases length. The procedure is extremely painful, takes several years and may permanently weaken the limbs, yet it is a choice some people are happy with.
I wrote a whole chapter about it because it’s a topic that people are interested in, but it’s not something very many dwarfs actually do. But every time people talk about dwarfism, before you know it, they’re on to limb lengthening as though it were the primary subject.
I spent a day with Dr. Dror Paley, the best-known limb-lengthening surgeon in the country who has a practice in Baltimore. I think that in certain contexts limb lengthening may make sense. The families I met in his clinic had always looked at dwarfism as a genetic defect, which it is, and they believe that if you have a defect and you can overcome it, well, you do what you have to do.
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