Signal Boost! Pass this on!

[capri0mni]

This is precisely what I've been trying to say to everyone in my life, and I keep getting (what seem to be) blank stares in response (hard to tell, in text-space). So I may be spamming my email address book with this, today... I haven't decided yet.

The latest entry from Dave Hingsburger's Blog (June 4, 2014):

The Conversation, Implication, and the Danish

Denmark has stated that they will be Down Syndrome free by 2030 and the announcement was made as if they have achieved some kind of great accomplishment. The eradication of Down Syndrome is made possible by ignorance about Down Syndrome and about Disability. I am thinking of this as [the] young man is speaking to me. A young man full of life who wants more life. A young man who doesn't, as the geneticists may think, mourn his own birth.

Do you think I will have Down Syndrome in heaven? he asks me. I asked why he was asking the question and he said that he'd been told that there wasn't any disability in heaven. As I believe that in heaven the common language isn't Danish, I told him, I think we will all be who we are, really are, when we get to heaven.

Good, he said.

Comments

[raze]

Punch-in-the-gut powerful. Shared this on FB.

[capri0mni]

Thank you.

[spiralsheep]

I'm sure I don't need to say this but if you prefer to delete this comment because its presence infuriates you (or whatevs) then please do. :-)

I rly dislike Dave Hingsburger's trite moralising at the best of times and that blog post is nowhere near the best of times.

The eradication of Down Syndrome is made possible by ignorance about Down Syndrome and about Disability.

Nope, it's made possible by a society in which mothers-to-be have access to medical screening during pregnancy and abortion (oh noes, wimminz chusing wot 2 do wiv their bodiez!!1!!). Down's syndrome isn't hereditary (! this is important as some disabilities ARE hereditary and the potential ethical arguments differ in different circumstances !). From over here it merely looks as if anti-abortion propagandists are using people's ignorance about disability, and about the ethics of personhood, for the purposes of spreading their unscientific and invariably religiously-motivated propaganda. I was brought up in a secular society with the idea that "Every child a wanted child" was a desirable goal for society in general and individual children in particular. I don't believe every ball-of-cells/foetus is an individual irreplaceable human person and I know of no reason to allow religious fanatics to impose their unscientific beliefs about "ensoulment" on my body or any other part of my life. I'm also very aware that the same sort of propaganda is used by similar groups of religiously-motivated fanatics to attempt to deprive (sometimes disabled) people of medical interventions based on, for example, human stem cells and, again, I know of no reason to allow medical treatments to be controlled by the unscientific beliefs of religiously-motivated fanatics.

Anyone who wants to argue about the history of eugenics with me is welcome to try but don't bother with any ridiculous binary comparisons about whether scientific or religious ideas have been used to incite the murders of more people because, alas, the answer is both/all of the above, and pretending otherwise is disrespectful to victims of eugenicist genocides (and, yes, the Scandiwegian nations generally have had historical involvement in eugenicist mass murders).

Note: I shouldn't have to disclose but, yes, I grew up with a childhood friend with Down's, and a member of my immediate family was born with a serious learning disability and lives a happy and independent life.

[capri0mni]

Discussions with you are not infuriating, because you take the time to present a reasoned argument, and actually pay attention to responses, even if (and when) we disagree.

[spiralsheep]

Thank you. And now I have time, I'll add some more disclaimers.

1) I do believe that having a wide variety of people on earth and in any given large group of human beings is beneficial to us as a species, whether physically (gene pool), emotionally (variants = wider competence, especially in extreme circumstances), and mentally (variants = wider competence &c). I don't believe that the human species benefitting from variety should override an individual woman's right to choose the circumstances of her motherhood.

2) I'm extremely wary of any social/econmic hardship enforced on the poorer and more vulnerable members of society by law, because the rich can almost always buy their way outside the law according to their personal preferences, which extrapolating our current western societies would lead to poor people having more disabled children and being blamed for being a drain on society by the rich who would have illegally opted out of having disabled children... oh, wait, that's more or less the current situation anyway. I'd like more done to deal with these existing hardships before anyone decides to exacerbate them. /ranty disability rights campaigner

3) I'm very aware that people like me will probably be booted out of the genepool within a generation... and I'm fine with that (for complicated reasons)... although I also know that any significant narrowing of the human genepool is a bad idea.

(yet) another place-holder reply

[capri0mni]

My brain is feeling the length of the day, and I'd like to be bright-brained when I attempt to herd All My Feels into a sensible order, in fairness to both of us.

Re: (yet) another place-holder reply

[spiralsheep]

Take your time. We know we're both tired (and I might not be around tomorrow... if all goes to plan). Sleep well (and I should be in bed too, bleh)!

I tend to visualise the intersection of deep feelings and logical thought as a Venn diagram of two sets that only overlap up to a point (and even where they do overlap, they're often pulling in differing directions). ::wryface::

Not yet bright-brained, but --

[capri0mni]

I want to get this out, so my inner-debater will go to sleep in the corner, and I can go back to Not!thinking (This household has been invaded by germs).

I tend to visualise the intersection of deep feelings and logical thought as a Venn diagram

I said "sensible." There are more kinds of sense than logic ... ;-)

Okay, so:

From where I sit, the Christian idea of Heaven and the humanistic idea of a perfect society here on Earth are the same thing (or rather, they're saying the same thing... just in different languages). Both the Abrahamic idea of Heaven, and Science-Fictional philosophy of Transhumanism present an imagined future world, where all the pains and sorrows that plague us now will be distant memories. And we can get there, as long as we do the right things (put our energies into the right sorts of worship and proselytizing, or put our energies into the right sorts of science and policies).

The question that's really important to me is not whether that perfect future world is worthy of striving for, but what is imagined as "perfect."

One view of "perfect" imagines a world where all disabilities are gone. Another imagines a world where everyone is free to be who they truly are, disabled or not.

I choose the latter definition (and I think you do, too). And for me, that latter view of the future includes a woman's right to abortion, for whatever reason (because having full autonomy over your own body is an essential part of being fully who you are). I'd rather a child with a disability not be born at all than to force a woman to carry to term a child she does not want, or can't take care of (and yes -- that does include myself-- which is the comeback I shout in my head, every time I read the anti-choice emotional blackmail line: "But if your mother could have had an abortion, she might have killed you! How do you feel about that?").*

But, to be honest, humanistic, science-driven views of a future world without disabilities scare me a hell of a lot more than any Christian view of Heaven without disabilities. Both futures are complete fantasies, so I'm not really worried that either will come to pass.

But --

If a devout Christian is disappointed to discover she or he has simply ceased to exist after death (extentiental wibbly-wobbly), that's no skin off my nose. But privileged leaders in government and other institutions who decide that the best way to create a "perfect" future is to eliminate the existence of those who are deemed unacceptably different can cause real harm to me and my future-generation peers here in the mortal realm (I was about to say "here on Earth," but we may move outward toward other living spaces).

I (generally speaking) don't like to think in terms choices reduced to zero-sum games, but I think that's appropriate, in this case. We have only so much monetary, intellectual, and emotional capital. The goals we articulate can act as lenses, making visions of a distant future clearer. They can also act as blinders, preventing us from seeing alternate paths to different (perhaps better) futures.

The reason I reacted to this entry with: "Yes -- this! I must quote for Truth!" is not all that talk of Heaven, but the last three words:

"'Good,' he said."

Every time I've tried to make the argument that attempting to eliminate disabilities is the wrong way to go about attempting to create a more perfect world, based on my own experience, I'm told (by several people in turn, or by a single person in one go):

a) That having a disability makes me biased in favor of disability, and that makes my point of view invalid (sic -- unintentional double meaning).

b) That I'm being selfish -- wanting future generations to live with the same painful, pitiful, limitations that I do, because 'misery loves company.'

c) That I'm an exception, because I was born disabled, and therefore, can't imagine how wonderful life would be, if only I weren't disabled anymore.

d) It's different, for me, because I happen to have all my intellectual faculties, so naturally, I can find escape from my pain through the world of the mind. If I didn't have that privilege, I'd be miserable, and not want to live.

Well, here's a conversation between men I've never met, who have a very different worldview than mine. One man was born able-bodied, and became physically disabled suddenly and well into adulthood. The other man is mentally disabled, and lacks the intellectual privilege that I have.

And they both agree with me that an imagined future world without disability is more frightening than inspiring.


*I happen to know that she was nearly given the option not to raise me, but she cut the down the doctor who was about to suggest I be institutionalized. And I would rather have not been born at all then be warehoused and abused in a place like Willowbrook (the woman sitting on the floor in the foreground appers to have spastic C.P., as I do)-- where I had a high probability of ending up, specifically, considering the time and place of my childhood. I thank Luck and Chance that I had a mother who was never much cowed by male authority figures.

Another stunned reader

[dialecticdreamer]

Down's syndrome free? They're FREAKING LYING. Because, frankly, the testing isn't 100% accurate. Still. So they're going to opt to abort a percentage of ACTUALLY healthy children and STILL not have a 100% ratio.

So what's going to happen to that tiny fraction of a percent of infants who are born WITH Down's Syndrome despite their "oh-so-enlightened" (sarcasm mode 7.3) endeavors?

You get people like my stepdad, born 1938 with severe spastic CP. Whose parents were told MINUTES after the diagnosis, "put him in an institution before you get too attached."

You get people like me, born with relatively mild athetoid CP in the middle 1960s, and after MONTHS of trying to figure out what was what, my mother was ALSO told, during the diagnosic conversation, to "i
"Institutionalize her, before you get any MORE attached. You're young, you can have another child."

So, yeah, they may end up with no VISIBLE cases of Down's Syndrome, but they sure HAVEN'T solved the underlying social problem. They're literally going to sweep human beings under whatever "rug" they think will work.

Re: Another stunned reader

[capri0mni]

Just like there are no Gay people in Iran...

... uh-huh... Sure...