Little people

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.

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