[LMB] No lefties in the Nexus

Beatrice Otter beatrice_otter at zoho.com
Fri Oct 4 18:03:28 BST 2019


I have seen this discussion before, and I am sick of it.

Disabled people spend our whole lives getting told, implicitly and explicitly, that we are a burden and a problem and everything about our lives is a tragedy and a problem for us and those around us.  If we achieve something or have something good, it's despite our disability, and our lives are STILL seen as a tragedy.  If we have any joy or pleasure in our lives, if WE don't think our lives are a tragedy, why, then lots of people spend a lot of time lecturing to us about how wrong we are.  And any place our needs or capabilities differ from "normal" it is unreasonable for us to want accommodation.  If we do get accommodation we need to live good and full lives, it's treated as if we should be eternally grateful for being permitted the resources we need to exist, as if that's something extraordinary.

And then we look at science fiction, and we get told, over and over and over again, that science fiction doesn't belong to us.  Or rather, that we don't belong in science fiction.  That the ultimate perfect world is one in which we don't exist.  We are problems to be solved and burdens to be relieved.  And sure, this isn't Nazi Germany, nobody's suggesting we should be KILLED, just ... prevented from existing in the first place.  As if THAT were so much better.  And then when we complain, how oversensitive we are because nobody's suggested killing us!  And a completely different version of us would exist, so we should be completely okay with everyone wanting a future with us out of it.

I know you're talking about editing out individual genes, and that's not the same as, say, aborting a fetus with those genes.  But in many cases, that would still make a life so different that it might as well be a completely different person.  And we're still at the fact that people who've never had the condition are the ones making the decision, and such people--especially in academic discussion--tend to be really enthusiastic about editing LOTS of things out, which makes those of us who are okay with SOME editing and not other editing leery.

Not to mention the fact that we don't have gene editing yet ... but we DO have abortions because of medical conditions.  Right now, if you have an amniocentesis and find out your baby will have Down's Syndrome, for example, a LOT of people will try to pressure you into having an abortion even if you don't want one and are fine with raising a child with Downs.  And until VERY recently, the so-called charity Autism Speaks (which the vast majority of Autistic people hate with the passion of a thousand burning suns) was pouring all its research money into looking for a prenatal test they could do so that parents would know if their fetus was likely to be autistic.  They never explicitly said why that's what they were spending their money on, but it's pretty obvious it was so parent could abort autistic fetuses.  Aborting fetuses with various conditions is a lot easier than editing out specific genes; we already can and do do it.

In the Vorkosiverse, whatever editing they can do NOW likely only came after a period of aborting fetuses with those conditions.

Are there genetic conditions that can and should be edited out of the genome?  Yes.  But who gets to decide?  Disabled people, the ones who actually HAVE these conditions, are pretty much never allowed at the table.  Able-bodied neurotypical people get to decide, and if disabled people object or want a voice in the discussion, that is allowed only so far as we agree with able-bodied neurotypical people.  If we disagree, then we need to learn how wrong we are.  Disabled people have a WIDE variety of responses to the question of what should be edited out and what should be left, but the only voices people will listen to are the ones who agree with what the rest of the world thinks.

And all of this is part of a larger real-world debate in which all disability is seen as a medical problem to be fixed, rather than a difference to be accommodated.  We spend billions on medical research for prevention and cure (even if the people in question don't want to be cured!) and then have no money for anything that would make a difference in the lived experience of disabled people here and now.

It's an academic thought exercise for most people, but something that connects with my daily life for me.  If I had a choice, personally, I would fix some of my health issues but not others: eyes, sinuses, gastrointestinal systems, hip, all would get fixed.  Autism, absolutely not.  Anxiety ... depends on what the secondary effects would be.  But we're only just getting to a point where some of the larger society is starting to concede that maybe we autistic people should get a choice in how research dollars are spent and whether a cure is the goal.  If there were a magic wand that could cure autism, most people would think they were justified in using it on me against my will, because it would be for my own good.

(By the way, most people assume that "high-functioning" autistics don't want to be cured and "low-functioning" autistics do.  In my experience, how close you are to neurotypical--or rather, how easily you can pass for neurotypical if you have to--has very little to do with whether or not you think autism should be cured.  The actual thing that makes a difference is how much acceptance and support you have.  If you have family and friends who accept you as you are and love and support you as you are, then you probably won't want to be cured.  If your family and friends consider you a burden and a weirdo and a problem and you're only acceptable if you can "act normal" and you don't have other autistic friends, you probably do want to be cured ... and you also have a very high likelihood of suicide.)

This isn't just an academic thought exercise for some of us, it hits very close to home.  You don't have to agree, but just because someone sees your words differently than you do doesn't mean they don't understand what you were saying.

Beatrice Otter


More information about the Lois-Bujold mailing list