The Freckle I Never See

When I was in college, I got sick. I don’t remember if it was the time I had pneumonia or some other time. It makes sense that it would have been when I had pneumonia, but it also could have been the year I spent drunk. Anyway, I was very sick, like I hadn’t been since I was a kid.

And I spent all night in the dark feeling like deathly shit until it got light. And then, I looked down at my body and scared the shit out of myself. I was way, way too big. I looked like a mountain range.

Yep, just for a second, I was imagining myself at six again, and the sight of my grown-up body disconcerted me to the point I almost screamed.

Not that my everyday relationship with my body is much better.

Look here. Brittney has this fabulous picture of herself. You will never see a picture of me like that, ever. I will never be that at ease around one, that trusting that what it shows is worth looking at.

Or look here at Plimco, having her naked superhero contest.

Is that brave? I don’t think either of them would say that it is and yet…

From the outside, it looks like fun. That’s why it bothers me that I can’t do it.

I keep thinking, what if it wasn’t me? If these bits and pieces belonged to someone else, say a friend of mine, would I accept this bullshit behavior from her–never looking at herself and enjoying what she sees?

I would not. I’d be furious.

Fuck it. I would rather do anything than write this post.

I want to see myself as beautiful and worth loving and believe it to be true. When does that happen?

Does it come when you finally make peace with the ordinary or do you begin to see yourself in some new way?

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.  )