[LMB] We've been discussing gene engineering on people...
beatrice_otter at zoho.com
Mon Oct 14 07:24:45 BST 2019
---- On Thu, 10 Oct 2019 22:06:29 -0700 Gwynne Powell <mailto:gwynnepowell at hotmail.com> wrote ----
From: Beatrice Otter <mailto:beatrice_otter at zoho.com>
If you had quoted my entire post, you would have noted that in my proposed method of handling genetic edits for medical conditions, if a supermajority of people with the condition think it should be eradicated, it would be on the list of genetic edits that could be made automatically.? Huntingdon's and diabetes would certainly qualify on that level.? Down's syndrome, autism, deafness, and some others would not.
Gwynne: We seem to have a fair amount of agreement on the board for that.
My belief is that people who have the condition should get a say (and a large one!) in whether or not it gets eradicated.? By eliminating the rest of my post and responding only to one line of it, especially when some peoples' email program strips my emails out so they only see my words in digest form or when someone responds to me, you have twisted my words out of context and implied me to be advocating something far more extreme than I actually am.? Snipping is good; over-snipping is not.
Gwynne: I think many parents would have an issue with random strangers
having control over what sort of children other people can have. As if they
have ownership because that embryo shares their disability. People with that
problem could certainly make the disadvantages, and advantages, of that
condition well known and understood. They could offer help and support for
the parents and child, they could campaign for government resources. But
the final say should rest with the parents, who will be raising the child and
who have the closest emotional connection.
To understand why I do not trust parents to make informed and beneficial decisions for their children in cases where the child is disabled and the parent is not, perhaps I should give some detail about autism treatments and the ways parents of autistic children treat autistic adults who try to offer help and support and advice.
The main autism "treatment" is Applied Behavioral Analysis, or ABA. It is gay conversion therapy in a different hat; it was designed by the same man using the same research at the same time. It is exactly as destructive to autistic people as it is to gay people. The goal is to make the subject "indistinguishable from their peers" by conditioning them to behave in certain ways and not in others. It is sometimes described as dog training for people, except that the code of ethics required of an ABA practitioner is less stringent than that required of certified dog trainers. Licensed dog trainers are required to consider whether the thing they are training the dog to do is good for the dog in the long run, and whether the tactics they use are harmful. ABA practitioners can do anything to their subject that is not illegal. ABA practitioners constantly argue that their "treatment" is evidence based and very scientific; it is, but it's important to ask what *kind* of research has been done. And the thing is, ABA has been around since the 60s, but nobody has EVER done any longitudinal study of it. Not even after its sibling gay conversion therapy was known to cause trauma in those subjected to it. All the research is very carefully only ever about short-term effects: can you induce x behavior in a subject using y methods? And yes, you can! ... as long as you don't care what the subject is thinking or feeling.
Modern ABA therapists have largely stopped using "aversives," by which they mean punishments (although they refuse to condemn those therapists who still, like those at the Judge Rotenberg Center in NY, use things like electric shocks to punish autistic children for not complying). This does not mean that the therapy is now good. Oh, no! Now, you see, what they do is they remove every positive thing from the child's life. Every thing that gives them pleasure, whether that is food they like, clothes the like, toys, books, stuffed animals, is taken away. The subject's everyday life is intentionally made as miserable as possible, so that good things can be used as rewards. The subject's only access to anything they enjoy is if they look normal enough. Even communications devices are regularly taken away, because being able to tell the adults around you when you're hurt or scared or hungry or tired is a privilege only normal children get.
Because nobody has ever done a longitudinal study, I can't give you rates of PTSD in those who have gone through ABA. I can tell you that I've never met an adult who lives independently and went through any amount of ABA who is glad they did. The most positive I've ever heard an adult autistic be about ABA is that it wasn't fun and they had to unlearn most of it as an adult. That's the best case scenario. Oh, and by the way, we've known for decades that autistics are far more likely to commit suicide than the general population. But nobody's ever actually done a study on suicide and suicidal ideation in autistics until recently. And they found that the number one predictor--by far!--of suicidal ideation in autistics is how much they think about and try to be "normal". Remember what the main goal of ABA is? To make autistics who are "indistinguishable from their peers" i.e. "normal."
Autistics have been protesting ABA for DECADES. It is still by far the most common autism therapy in the world. There are TONS of parents of autistic children who absolutely LOVE it. And they get very hostile and abusive to any autistic who tries to in any way contradict the idea that ABA is a miracle that will "save" their child. Actually, hostile and abusive are mild words for how vitriolic they can get. They know best for their child, and how dare we question them! How dare we speak up for ourselves! How dare we contradict them!
Not all neurotypical parents of autistic children are like this; my mother is neurotypical, and when my baby brother was diagnosed with autism and ABA was recommended, she took one look at it and went HELL no. But a lot are. And the ones that are, they are not going to listen to people who ask nicely and want to give them a full picture of the whole reality of the condition, its benefits and drawbacks. And they are VERY effective at shutting down and silencing people they disagree with, and controlling the conversation about autism.
And I do NOT want those people having the ability to decide whether or not people like me continue to exist in the future. You may ask, "but you wouldn't want people like that to be parents of autistic children, so maybe it's better if they had the "normal" children they want so much." And there's something to that. But you know what, if there's a good-sized community of disabled people who are allowed a voice and legal protection, we can advocate for ourselves and work to shape the conversation such that there is a place for us in it. We can work to shape the legal system such that abusive "therapies" such as ABA are not allowed. We can build communities for ourselves. The fewer of us there are, and the more you normalize eliminating anything that's different, the harder that is.
There are some things that are only ever harmful, and if we can eliminate them we should. But the horrifying thing for people like me, the thing that the VAST majority of society thinks would be just great, is that a lot of things that are different but not harmful would be included in that elimination by well-meaning people. There is no room in most peoples' vision of the ideal society for people like me. And unless you put some very hard limits on what can and cannot be eliminated or changed, social pressure will work to eliminate people like me once genetic alterations become feasible. And the fewer disabled/differently abled people there are, the harder it is for us to have our voices heard. Even shouting at the top of our lungs, we get ignored today. Eliminate most of us, and you make it worse.
As for the responses: sometimes when there's a long post there'll be one section
that really jumps out at me, so I respond to that part. Generally if I agree
with the rest of it, or have no strong feelings either way, there's no need to
go through all of the rest of it, so like most posters I just concentrate on the
part that concerns or interests me the most. It's not meant as an insult or criticism.
Most people on the list, WHEN they snip (and we don't always snip when we should!) usually leave in what they're specifically replying to and enough of the surrounding message for at least some context. In this case, the issue was that they deleted all but one line of my post, and then responded to it as if if was the only thing in the post, ignoring the bit of the post they had deleted where I addressed the issue they were commenting about. That was annoying. I approve of snipping! I just don't approve of removing all context so it sounds like someone is saying something completely different than what they actually said.
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