About genetic research and prenatal testing

Not super coherent or well-organized, sorry.

The problem is when people assume that “wanting your child to be happy” or “wanting your child to have a fulfilling life” necessarily requires wanting your child to not be disabled. How much sense it makes to tie those things together depends on the disability you’re talking about, but in the majority of situations, they’re not really that closely related.

Nobody is guaranteed happiness. Not only does having no genetic conditions not guarantee your health and abilities for the rest of your life, health also doesn’t guarantee happiness.

In fact, it would be better to say that nobody has happiness. Nobody has permanent, constant happily ever after. Nobody is totally free from problems, from difficult tasks, from stress, from grief.

What we do have, despite all those difficult things, is lives that are worth living. We have good things that aren’t outweighed by the bad.

Happiness is not in our power to give, and a fulfilling life doesn’t need to be given– not in advance, not by testing and planning. Life is like that. Life is worth living. Except in the most exceptionally intolerable circumstances, people want to live.

Pain and struggle and grief aren’t something that can be swept up and tidied away by removing disability from the picture. First, because they will still be there, and second, because they don’t need to be swept up to make life worthwhile.

  1. I like being alive?
  2. I think my life is worth living despite the things I struggle with.
  3. If I didn’t struggle with these particular things, I would be struggling with something else.
  4. There are ways to address my problems and make my life better, short of editing me to not have them.

If that was even possible, which it isn’t.

When it comes to genetic testing, the discussion isn’t even about curing people like me. It’s about aborting fetuses that would become people like me and having normal babies instead. Let’s be honest about that.

I am well aware that an argument could be made that my parents would be better off if I didn’t exist, or if they’d had a more productive-member-of-society-ish child instead of me. But I don’t actually hate myself enough to think that I shouldn’t exist, and… I have the audacity, I guess, to think that it’s good that I don’t value myself that low?

I don’t believe that people need to earn the right to exist by being productive enough, or normal enough, or happy enough, and what bugs me about a lot of discussions of prenatal testing is that the message seems to be that I should judge myself more harshly.

I should agree that my family, and the world in general, would be better off without people like me. I should agree that the best thing for me would be to never have been born.

How can I believe in the complete non-existence of people like me as an important, benefical goal without in some sense hating myself? How?

I don’t think it’s possible to detach that implication from this discussion– especially since many people who are in favor of this kind of research aren’t talking about an option, about some people who choose to, but about nobody ever. Nobody ever having another kid like me. What I believe about future kids like me, as a group, can’t be completely separated from what I believe about myself.

I absolutely believe that people should have the option to not have/raise a child they aren’t prepared to have. No pressure should be put on anyone to carry a pregnancy to term, or to raise a child themself intead of choosing adoption, if they don’t 100% want to raise that child. Anything less harms everyone involved, including the child.

My problem is with the assumption that of course, obviously, no one would want a child like me. And the assumption that there’s nothing to be done to help people like me (and our families) short of getting rid of us.

 

 

 

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