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This is a tough one for me. My family carries an x-linked recessive disorder (hypohidrotic ectodermal dysplasia -HED - basically no sweat glands and a host of related complications) that manifestss in the half the boys; half the girls will be carriers. My brother had it, and I'm 90% sure I'm a carrier. My brother had such a hard life. Even though he was dyslexic (not sure if that is related to the disorder or not - my cousin who has it is also learning disabled) he was incredibly bright - genius, even. But he looked odd and had so many health problems he couldn't participate in many normal childhood activities, and was ostracized for that. It really got to him, and I don't know that I would wish that on anyone. On the other hand, he was a deeply special person and I don't regret his life. Now that he's gone (got hit by a car almost 3 years ago) I can't ask him how he feels about things, but in our decision whether to have kids or not, this is certainly an issue for ratbastid and me. On one hand, I wouldn't want my brother to think I wouldn't want a kid like him. On the other hand, I don't know if HE would wish this kind of life on anyone. The illness, the difference, all that. Part of me thinks that there's something to be learned from every experience, and I shouldn't shrink away from this one just because it is hard, or not what I expected or hoped for.
That said, if I found out I was going to have a child who was going to be so disabled as to never be really functional, I think I would have an abortion. If you're missing parts of your brain or are so dysfunctional as to be essentially trapped without human consciousness in a meat puppet until it gives out on you, it seems to me it would be less cruel to simply stop it before it starts. I think it would take something more than the possibility of a life of inconvenience to lead me to that choice; it would take really being "stuck" with a non-human human who shouldn't even be here. I know that's a fuzzy line made fuzzier by modern medicine, but just because a body breathes and swallows doesn't mean it's alive or conscious.
The other thing I have to say is that this is such an intensely personal choice, I can't imagine judging someone for choosing differently than I would. I know parents who have raised autistic children with such love and grace and gratitude; I know people with CF kids who have died and are endlessly bitter about it. I know people with mentally retarded children who find joy in them, and people with perfectly normal children who break their hearts on a daily basis. Everyone has different abilities and thresholds for love and compassion. I can't fault someone if their hope makes them so blind as to lavish love on someone who can't receive it the way I think they should.
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"If ten million people believe a foolish thing, it is still a foolish thing."
- Anatole France
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