[LMB] Gene cleaning in real life
beatrice_otter at haugensgalleri.com
Fri Nov 10 05:13:30 GMT 2017
> I am completely in favor of all non-coercive efforts to prevent such children from being born.
Non-coercive! What a word. You know, when my baby brother was born, I was sixteen. My mom was 43. (He was an "oops" baby.) I ended up going with her to a lot of the prenatal appointments, because we had to drive into town and pretty much always had other errands and stuff to do on the same visit. Because she was 43, the doctors and nurses were VERY insistent that she have an amniocentesis to check for Down's Syndrome. The risk of it increases with the age of the mother, you know! Down's Syndrome babies are so HARD to deal with! Mom said, quite firmly, multiple times, that she would not abort a baby with Down's Syndrome, and was there any reason to have an amnio OTHER than to check for a condition that would not change my mother's plans, wishes, and desires? No, but what if you change your mind once you KNOW, once it's no longer theoretical--at which point my Mom had to firmly change the subject. (I know that there are other reasons to have an amnio other than to check for conditions you might want to abort, but not once did any of them talk about those reasons.) There was a LOT of pressure from the doctors and nurses to test for a genetic condition solely so that the fetus could be aborted if it had it. And that was for Down's Syndrome. There are no organizations that spends millions of dollars a year designing and running ads talking about how HORRIBLE AND DESTRUCTIVE Down's Syndrome is, and how it DESTROYS FAMILIES. There is a LOT more demonization of autism than of Down's Syndrome. If a similar test existed for autism, how "non-coercive" could it possibly be?
> Nobody sensible is talking about taking your brain apart or aborting you.
Anyone talking about curing me is talking about taking my brain apart. Because our brains are wired completely differently than allistic brains are. I have MRI scans with (some of the) structural differences highlighted. If I could find them or similar images online I would show them to you. I do use them in my presentations about autism. The differences are neither small nor subtle. And curing autism is the main goal people talk about. It always has been. And if I talk about not wanting to be cured, people call me selfish and deluded. If I point out that curing someone would require RADICALLY changing their brain structure, most people say "well, if that's what it takes" and accept it, and call me needlessly dramatic for objecting to it. These are not fringe loonies. These are ordinary, sensible, mainstream people. If a magic wand existed that could do it, many of them would use it on me without asking first and then expect me to be grateful for "fixing" me. This is not me pulling some random weird case out of thin air. This is me telling you the sort of things people say to me.
Some autistics do want to be cured even at the cost it would take. I'm not saying they are wrong to want it, or that they shouldn't have the opportunity if and when the technology is developed. But given the current climate, there would ABSOLUTELY be a STRONG pressure to use it on ALL autistics, of every age, regardless of whether we want it or not.
As for aborting me, nobody's talking about aborting me because I'm already, you know, born, and you can't abort someone when they're no longer a fetus. It's a bit late ;) However, there ARE people who, if my mom was pregnant with me now, and they knew I was going to be autistic ABSOLUTELY WOULD tell her to abort me, for her good, for my good, and for the good of society. Even knowing that I grew up to be just fine, holding down a job and living independently, quite happy, the poster child for about as "normal" looking as an autistic can be. I know, because they've said so. Because they are so sure that autism is bad and evil and STEALS CHILDREN and can only ever be a TRAGEDY regardless of what the autistic person in question (and their family) think about it.
I'm always glad when somebody doesn't think my brain should be rewired without my consent, or that my parents should have aborted me if they could have known I'd be autistic. Unfortunately, I run into people who disagree depressingly regularly. (Granted, this would probably be lessened if I didn't go around giving presentations about autism and talking about it with strangers. I mean, once people know you as a person and not just a label, they generally don't assume you should never have been born. But that doesn't change the fact that that's their default.)
> My beloved daughter spent the first few months of her life crying close to 24/7. I fantasized about killing her. Many parents have dark thoughts when they are extremely sleep deprived and otherwise totally stressed out. She's 30 now, and knows the story.
I'm sorry you had such a terrible experience. Sounds like you also had a bit of postpartum depression. But whatever the reason, I'm sorry you and your daughter had to go through it.
However. The situations are not at all comparable. In the first place, I'm sure you told your daughter years later, after things were better, yes? As a *past* thing, about a particularly dark time in your life, and you were glad you had gotten better and that things had changed. You did not sit down, with her next to you and old enough to understand what you were saying (about age twelve, if I recall the situation correctly), and talk about how horrible she was and how you thought about killing her PRESENT TENSE, SOMETHING YOU STILL THOUGHT ABOUT, and that the only reason you hadn't killed her yet was because your other children needed you.
And second, if you actually HAD gone through with it, the vast majority of the world would not have exhonorated you for it. Nobody would have said you were justified to put her in a car and drive it off a bridge, say; nobody would have said it was *better* for your daughter to be dead because obviously she could never have any kind of a decent life. Journalists would not have fallen all over themselves to make you an innocent victim. These are all things that happen every time a parent murders their autistic child, and it happens with depressing regularity.
> By the way, both of my brothers, one niece, one nephew, AND MY SON (also beloved) are all on the autistic spectrum. I lean that way a bit myself.
It does run in families.
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