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.
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.
Some of the people I interviewed had a pretty healthy attitude about the surgery and do not deny that they are dwarfs. They say it enables them to function better in a world built for people who are between 5 and 6 feet tall. I don't have a problem with people making this choice. But I do think it's experimental. I don't think it's worth the pain. I also don't think it's worth taking three summers out of a kid's life to do these surgeries. How many years of life are you a kid, you know?
Does Becky's size ever affect the way you parent her?
It's very easy to forget that Becky is 11 because size is such an incredibly important indicator of how old a person is. I'm struck when we see Becky's classmates because they are at least a foot taller than she is and so they seem older as well. It can be a difficult thing for a parent to keep straight, never mind a kid.
What is the hardest thing you've dealt with so far, in terms of her dwarfism?
When she was 5 months old she landed in the hospital with what for any other kid would have been a bad cold, and almost died.
Was this a result of her dwarfism?
As with most dwarf kids her respiratory passages were tiny and her ribcage was tiny, which meant that she couldn't fully inflate her lungs. So when she caught RSV, a serious but very common respiratory virus, she was overwhelmed. It was the worst moment of our lives. She required a tracheotomy, she required oxygen for two years. We had nurses running in and out of the house because she needed home nursing. She was more of a project than she was a child. It's hard even to talk about.
Have you had to make changes in your home to accommodate her?
We haven't done all that much to make our home accessible. We've got stools here and there. She flips the light switch in her room with a ruler. We moved the cereal to the bottom shelf so that she can make herself breakfast if no one is up, and we try to leave clean dishes in the dishwasher, since those are at her level.
Do you think there any benefits to being a dwarf?
Well, there's the dubious benefit of being kind of a celebrity in your community. Everybody knows who Becky is. I can be walking downtown with her and people will stop the car and roll down the window and a kid will say, "Hi Becky," and she'll say, "Hi." And off they go and I say, "Who was that?" and she says, "I don't know." Because she's different looking, she is known.
But there are disadvantages too. Amy Roloff, a dwarf mother of four, says she gets tired of being an ambassador for dwarfism. She can be in the mall trying to get home to cook supper and somebody will come up to ask her about being a dwarf and she feels that if she blows them off, if she isn't completely polite, this person will actually form some sort of an opinion about how dwarfs behave generally.
What do you do when you get stares or people say things that are offensive?
If it's teenagers laughing and saying "look at the midget" I usually get the hell out of there. If we run into a kid saying "look at the little person" or whatever and the parents go "Shh, it's rude to stare," I try to approach them and talk to them and have them meet Becky and understand that she's just like anybody else, really, it's just that she's short.
I also think that for the parents of any child who is different, it is vital that their child learn from an early age that her difference does not make her any worse -- or better -- than anyone else; that everyone is different, but some differences are more obvious than others; and that, with certain obvious exceptions, she can do whatever she wants to do. Of course, if Becky ever gets it in her head that she wants to play competitive basketball, I will have to explain to her that that option is not open to her except through the Dwarf Athletic Association. This is why support groups such as LPA are so important -- dwarf kids can meet and get to know happy, successful adults with dwarfism, and socialize with other children who look like them.
You devote a relatively large amount of space in the book to the Holocaust and dwarfism. Why?
What kicked off my interest in World War II was this strongly held belief among little people that the Nazis killed all the dwarfs. I believed it myself. But as I found out, it really wasn't true. The so-called euthanasia program was aimed at people with other serious mental and physical disabilities.
So dwarfism was not considered serious enough to simply eliminate?
Exactly. The dwarfs who did end up in the death camps were Jews. I thought that was important because in recent years I've noticed that all types of groups want to claim their little piece of the Holocaust. I found it affirming to understand once again that this was a unique crime and that especially as we get further away from the Holocaust historically it is important that the message not be diluted. The Jewish nature of the Holocaust cannot be denied.
How did understanding this history help you learn "to see the world through your daughter's eyes"?
In telling the story of dwarfism and where Becky fits into it, I think that the Holocaust represented the end of eugenics. It was really from the ashes of this Holocaust that we ended up getting the rights-based way of looking at people who are different. This is the culture that Becky has benefited from so much -- from the understanding of what a horrible mistake eugenics was and that instead it makes far more sense to value people for their differences.
The gene for achondroplasia was identified in 1994 by a team of scientists at the University of California in Irvine. So, we now have the ability to look inside the womb to decide whether or not to terminate these pregnancies. What do you think that does for this community and our children?
Well, certainly it's a big fear in the disability rights and dwarf communities. At the moment, no one routinely screens for dwarfism. It's too rare. However, in a few years it may very well be possible to do a routine screening in pregnant women for the top hundred most common genetic conditions, or the top thousand most common genetic conditions.
Do you think that parents whose fetuses tested positive for the achondroplasia gene would get pressure to terminate?
Absolutely. There's one study I write about in my book that showed something like 10 percent of prospective parents would choose abortion if they learned their child would have a genetic predisposition to obesity. That is an amazing finding. Of course, it was much higher for achondroplasia, and higher still for Down syndrome.
When these tests become available there will need to be a serious education process for parents. If you find out that your child is going to have achondroplasia, you should be introduced to all of the facts about the condition. In the future, there may be an ability to actually fix the genetic flaw that causes achondroplasia. That's kind of loaded language, but it is a flaw; it's a defect. Genomes can be defective, that doesn't mean the person is defective.
Do you think your book will help parents to have a sense that, OK, you don't ask for difference, you didn't ask for the dwarf child, but once you've got them, here's the kind of journey you can have and though it's difficult, it's rich and it's meaningful?
Well, I hope so. Because this is not something we would have chosen for Becky, and yet in some ways she's going to have a very interesting life because she's different. One of the things many adults with dwarfism tell me is that their uniqueness has lent a special quality to their lives. They've seen things that other people don't see because of that difference.