To Live or Not to Live

In Columns, Life With Laura by Laura Stinson

I recently came across a news story about the U.N. diplomats writing a treaty regarding the rights of the disable

d. The focus of this particular story was the debate between diplomats about whether to ban the abortions of fetuses known to have some sort of disability.

This puts me in a quandary.

I am a woman. And, as a woman, I feel very passionately about a woman’s right to choose whether or not to have an abortion. While I may not necessarily agree with the practice, I do know that for some women, abortion is sometimes the only choice. And every woman should have that option.

However, as a person with a disability, I know all too well the fear of perhaps having been one of those aborted fetuses. If my parents had had such technology available to them that not only allowed them to know whether I would have been disabled, but also decide whether or not to exterminate me, would they have done so?

I’ve never asked my parents that question; I’m too afraid of the answer. Imagine being in your early 20s, faced with that kind of decision. Not only being young and newly married, but in the early ’80s (and earlier) the science and technology of today was not available. Much of it was not even being researched or considered.

Could any of us say what we would have done in our parents’ situations?

It is very easy in hindsight to say, “Of course I would have kept you. Nothing would have made me want to terminate you!” But, this is hindsight. For my parents, it’s 23 years down the road. Twenty-three years after the doctors told them I wouldn’t likely live past 2. Twenty-three years after they were told that I would remain the size of an infant and were given the implication that I would never be self-sufficient.

If they had been given the option of a do-over, would they have taken it? Without knowing me, without knowing my capabilities, without knowing the heights I would reach and the heights I have yet to reach, what decision would they have made?

What decision would any parent make? We all want the best for future generations. We want our children to be mentally, physically and emotionally sound.

While our lives may have been good, even outstanding, would any of us wish our situations on another child? I know that I wouldn’t.

Surely life is hard enough on its own without any additional challenges. But those challenges make us who we are. Would I be me without the OI? I’d like to think so, but I can’t honestly say that I would.

So, no, I wouldn’t wish my situation on another child; I don’t particularly want kids as it is, but if I ever do decide to raise a family, I will adopt my children. I know there is a 50 percent chance I will pass OI on to my offspring, and if I can prevent that, then I will.

But even if I wouldn’t willingly pass on challenges to a child, I would also not deny her life simply because it will be hard.

Does that mean I am opposed to banning fetuses that will be disabled? If I say no, does that mean I am in favor of banning certain abortions? I will say only this with certainty: I don’t know.

What would you do? Share your views and experiences with us. Email us at or join the Online Forum.