[LMB] Non-typical neural positions and gene-cleaning (was: Re: GJ&RQ Ch 3 - Cordelia and Sergyar)

Raye Johnsen raye_j at yahoo.com
Tue Aug 16 15:21:44 BST 2016


On 7/20/2016 6:09 PM, Zan Lynx wrote:
> You would never be able to convince individual parents to have defective
> children for the *possible* far, far, far future benefit of the species.
On Jul 21, 2016, at 01:18 AM, Beatrice Otter <beatrice_otter at haugensgalleri.com> wrote:

> Can we please not talk about "defective" children? Because I'm autistic and right now, as we speak, 
> Autism Speaks--the largest autism "charity" and "advocacy" group in the US--is funding genetic research> into autism for the purposes of trying to devise a test similar to amniocentesis so that you would know 
> before birth if your child was going to be on the autism spectrum.
> ...> It doesn't take a genius to figure out what they want to do with the information.> ...> Am I defective? My bad hip and bad sinuses and bad eyes are, and if that could have been cleared up 
> prior to birth, I would be completely in favor of it.
> ...> My autism ... no way in hell. You would get a completely
> different person walking around in my skin. 

From: lois-bujold-bounces at lists.herald.co.uk <lois-bujold-bounces at lists.herald.co.uk> on behalf of A. Marina Fournier <saffronrose at me.com>

> Substitute bipolar for autism, and my response is the same: Hell, no.> That's the thing that makes me reaaaaly leery of things like the Vorkosiverse> gene-cleaning technology. Who decides what is good and what isn't?
> and how would consent of the changed be obtained?
> Who decides what are medical problems to be fixed/eliminated and which 
> are simply normal human variations?
As someone on the ASD spectrum myself, I am torn.  On the one hand, I do like who I am - NOW.  And I am - for the most part - not defective.  But I'm on the other side of forty and it took a lot of time, effort and tears to get me here.  I can't count the number of times I would have given ANYTHING to be neurotypical.  To be able to hold down a job.  To be able to drive a car.  To be able to understand most jokes.  (I still can't stand slapstick, I never get parody, sarcasm needs to be obvious, etc).   To read body language.  I had to teach myself every single damn strategy there is to function in society.  I'm exceedingly good at armchair psychology because I had to teach myself to 'get' what everybody else instinctively grasped.  And it HURT.  

If other people like being autistic, that's great.  But if my parents had had the option to gene-twitch the zygote that became me into a 'normal' kid... I'd invent a time machine just to go back and chant at them, "DO IT! DO IT! DO IT!"
I know people are thinking of the 'Gattaca' scenario - where non-gene-twitched kids get seen as defective simply because they're not perfect, while they're perfectly fine.  And I agree that's not a scenario anyone wants.  But at the same time - if the option to NOT be ASD existed for me, the person who offered it would be wringing their hands from the sting from how hard and fast I grabbed it.
So please don't just assume all ASD people are happy/content with their lot.  I, at least, would cheerfully sign off on gene-cleaning - and neurotypically-aligning - any offspring I have.  Because nobody should hurt the way I do, least of all my little ones.
Raye
 raye_j at yahoo.com 


  


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