Little people

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.

Next Page: Children who are different must learn that they aren't any worse -- or better -- than anyone else

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