Monday, July 03, 2006
Intentionally Passing on My Dwarfism
At a gathering a few weeks ago, an elderly woman I know was discussing my pregnancy with me over a meal. This is someone I’ve known casually for about two years. (For the sake of conversation & anonymity, I will call her Lucy in this entry.) I want to say here and now that I do not believe she meant any malice by her comment (and I’m certain that others have thought it, although few others have said much). During our conversation I was explaining that, because of the genetic nature of our different types of dwarfism, Brian and I had a fifty-fifty chance of having a child with my type of dwarfism.
Lucy’s reaction to this news was one of surprise and concern. She made a comment to the effect that perhaps those odds were much too high. That somehow I was being somewhat irresponsible in trying to have a child with so much risk of that child inheriting my dwarfism. This seemed to imply that perhaps I shouldn’t be doing this. Again, I want to emphasize that I don’t believe that Lucy meant to be offensive or judgmental. But her reaction does reflect a certain mindset that exists in our society.
Here’s how I look at it. If my baby has dwarfism, okay. If he/she doesn’t, okay. See, I don’t see myself as having “suffered” or as having less of a life because I’ve spent it in this body. I was very lucky; I was born to parents who raised me with the belief that, just because I was different, didn’t mean I couldn’t do almost anything in life that I want to.
Yes, I recognize that parts of my childhood were different from most kids (surgery and whatnot). I recognize that there are aspects of my life that are not as convenient for me as they are for an average-sized person. But does this mean my life experience is less than someone else’s life? Does it mean that I haven’t gotten as much out of life as anyone else? So far I have lead a full and happy life. Someone very wise once said that life is what you make of it. And so I have. If there’s something I want to do, I find a way to do it. That’s how I’ve always done things. And that’s how I will bring up my child, regardless of whether or not that child is a little person.
I know I’ve probably opened a can of worms here. And I know I have not yet come close to all of the arguments on both sides of this idea. But, I’m not here to write a novel. I simply wanted to put to rest my reasoning in all of this. If you, the reader, is really interested in this whole subject, there are lots of websites and books about bioethics. I strongly encourage you to do your own research.

