The Light Goes On!

Imfunnytoo has a post today that’s still got me sitting here stunned into a "Holy shit!  She’s right." stupor. 

I won’t bore you with the particulars–as I’m sure you’re either up on them or can find them–but the general problem is that we good lefties are total asshats to people with disabilities, especially when it comes to hearing from people with disabilities about issues having to do with disabilities.

I have long wondered about this.

From my end, I think it’s got to do both with my family and the small rural churches my dad served (though, funny enough, my Russian professor confirmed for me that the same was true among my grandfather’s generation of men in Russia as well).  But the whole time I was growing up, I was always around men who’d lost body parts.  Men of my grandfather’s generation who worked on the farm didn’t necessarily reach grandfather age "whole."

My grandpa lost part of a finger in a grain elevator mishap.  I went to church with three different men I can think of who lost hands in augers.  People lost limbs to diabetes.  My beloved Uncle B. was on crutches his whole life because of the after-effects of polio.  And that’s not to mention the people just brought down by time.

I’m not saying that this was some glorious time of disability acceptance.  People were put in institutions or hidden in bedrooms in their parents’ homes and all manner of horrible things.

But I think what was different was that I didn’t grow up with this idea that everyone had whole, perfect working bodies and "normal" working brains.  And, more importantly, no one I knew thought science could fix that.

Could doctors ease your suffering?  Yeah, probably.  Could they heal you, in the sense of bringing you into line with "normal"?  No, probably not.

And no one expected them to, I don’t think.  You might have prayed for a miracle, but you didn’t believe the doctors could necessarily deliver one.

My uncle was among the first group of polio victims to be diagnosed with post-polio syndrome.  He was also obese.  When he was dying, and not just in the "there’s nothing more we can do for you" way but in the "make sure your family comes to see you" way, the doctors still had him on a calorie-restricted diet "for his health."

We still sit around and laugh about that one.  Yes, by god, deny the dying man a steak because it’s not good for him.

Anyway, this is all a long and convoluted way of saying that I thought that people’s discomfort with disabled people had to do with the knowledge that any of us could end up in a wheelchair or brain damaged or without limbs just like that; that facing other people’s disabilities forces us to confront our own frailty.

But that wouldn’t explain the hostility on the internet.  After all, I could "confess" that I’m actually two guys who love nothing better than to fake being a girl on the internet just for the fun of meeting folks and seeing if they can tell that I’m actually a man and that, on occasion, I’m not the same man you met before.

That would be awesome!  But it wouldn’t negate the fact that what we do here is interesting and that I say some engaging stuff.  It’s a benefit to the internet (as well as a drawback): anyone might be anyone out here.

So, then, what is so threatening about someone saying, "You’re talking about this disabled person as if it’s fine for doctors to do whatever they think is best for her, when I, as a disabled person, can tell you that doctors are not always the selfless, open, moral, without bias geniuses they might appear to be?"

And that’s when imfunnytoo nails it.

They don’t want to question their own faith in medicine, so they deride our skepticism over some doctors actions.

We do place so much faith in medicine, in this belief that, as long as we eat right and exercise enough and live according to the guidelines set out by the AMA and/or the FDA or OSHA, we will be healthy and "whole."  And, if by chance, fate makes a mistake, perhaps doesn’t realize that we have been following the guidelines, and our health and "wholeness" is compromised, medicine will be able to fix that.

Disabled people, just by existing, prove that faith is misplaced.

But I also think it’s more than that, and this is something I’m just kind of seeing the vague shape of.  I’m reminded about our discussion about circumcision and some folks said that you simply cannot discount the draw of conformity.  And, I don’t know that I’m going to do a grand job of articulating this, but it seems to me that you cannot discount the draw of conformity in this case as well.

People have a lot invested in the idea that they are not only living the "right" way, but that theirs is the "right" way to live.  I think a lot of us have gotten past the point where we believe that it’s okay to force others to live like us, just because we’re so sure that it’s right, but I don’t see that we’re very far past the belief that, even if others don’t live like us, they should.

And I think that a lot of us believe that disabled people are defined solely by your disabilities, by the things you can’t do, and so y’all should just be sitting around your houses in giant masses of self-pity and hatred for those around you who are "normal."

(Hmm.  Just as a side note, does that strike anyone else as the basis for the plot for every supervillian known to man?)

Here’s what I wonder.  Are we so invested in believing that our way of living is right that we expect those who can’t live like us to envy us?  And, if people who can’t live like us don’t envy us–perhaps because they’re just busy being about the business of being alive–do we perceive that as hostility that must be confronted as hostility?

(Obviously, now, I’m talking about something larger than why so many liberals took this week to show their tails to bloggers with disabilities.  )

4 thoughts on “The Light Goes On!

  1. See, I always expected the righties to use us as part of their Duty to Give Birth Stuff, telethons,snowflake babies, ‘inspiration’ and all…but it’s the leftie dismissiveness particularly on Pandagon, that seems to read to me…"Once you have that disability and might need care, or you’ve had it all your life and need care, you stop being/never are a woman, and instead are a tool to opress caregivers who are mostly women…"Um, what? Huh?So I was also saying, "Shit!," but then followed by "Do they actually *believe* the stuff they’re spewing or is there something in the drinking water…?"

  2. This post is wonderful. You do a remarkable job of articulating something I’ve been feeling for a while now – I haven’t thought about it in terms of disabilities, but I have noticed how invested many people I know are in living the "right way" and making sure you know they are…and it is, adhering to certain health guidelines, owning certain things, going to certain events…and my own reaction to it is disturbing…I find myself resenting these people and examining where I fall…even though I know that reaction is ridiculously misplaced.I need to think more on this and think about it in terms of the way you discuss it. Thank you.

  3. my 93 year old mother-in-law was dying of cancer, and we had to fight tooth and claw with the oh-so-wise and knowing md’s (and my husband’s sister)to give her enough morphine to keep her from agonizing pain. Reasoning behond this: they didn’t want her to become addicted. who were they kidding?? Not only the handicapped suffer from the syndrome you explain so well, Aunt B.

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