Thursday, November 21, 2013

Why I Can No Longer Fully Support the Social Model

I am tired of feeling ashamed to be disabled.

Or not disabled, really, the social model makes that distinction.  I am ashamed to be impaired.

Disability, in a nutshell, is what society imposes on you.  Impairment is the biological condition that causes society to disable you in the first place.

Here's the thing:  Not everyone who is considered disabled by society has an impairment that can be defined by the ADA as "substantially limit[ing] one or more major life activities".  Say, someone who has dwarfism without any associated conditions - just the short stature.  Dwarfism is considered a medical condition and those with dwarfism are frequently discriminated against because the environment isn't built for them - just as it is not built for someone who uses a wheelchair.  If society was simply more accommodating, little people could go about their days exactly the same as someone of average height.

That doesn't work for me.  Not everyone who is disabled has an ADA-definable impairment - but I do.  Several of them, in fact.  And I'm tired of feeling shamed.

Sure, if society was more accommodating, my life would be 90% easier.  But there's still that other 10%.  I would still have chronic pain and fatigue.  I would still be unable to walk distances.  I would still have crippling, yes crippling, anxiety that grabs me in a vice grip and doesn't let go.  I would still have depression that sends me into a fetal position, sobbing and loathing myself.

If society was more accommodating, if ableism didn't exist, I would be able to obtain a power wheelchair easily with features that could mitigate the chronic pain and fatigue.  I would be able to go anywhere I liked with that wheelchair without a second thought, including on and off public transportation.  I would be able to be open about my mental illnesses and my medication without fear of repercussions.  I would be allowed to do things my way, without being told that this is normal and I must do everything in the normal box or not do it at all.

But it would not erase my pain, my fatigue, my panic, my depression.  And I'm tired of feeling ashamed for that 10% of me that will never be able to do the "normal" things, even in a different way.  I'm tired of social model activists acting like if we fix the world, everything will be peachy keen.  I'm tired of being told that the reality of someone who is solely disabled by structural barriers is anywhere close to mine.  I'm tired of my own internal battle, walking the fine line between cure and treating the parts of my impairments that make my life miserable.  I'm tired of feeling like a bad crip for wanting my mental illnesses to go away and never return. I'm tired of not fitting anyone's idea of what disability should be.

And so I can no longer support the social model of disability.  Because though it is a good theory, though I have subscribed to it for as long as I've known what it was, it is not enough for me.  It no longer fits my reality, as so many things have changed with my body and my disabilities over the years since I first discovered the social model.  The radical model - though I identify with many of its values - is not for me either.  Some impairments may be socially constructed - and there's a lot to be said with that about the medical profession and diagnoses - but mine is not.  I am still impaired.  I will always be impaired.  And no amount of societal rearranging is going to change that.

I don't know what model I subscribe to, now.  I feel a bit adrift without a model to cling to.  Maybe I'll create my own, though I have no idea what it would say.  But the fact of the matter, my life does not fit into a neat box, whether that box is models of disability or disability itself.  If and when I can somehow come up with a model I can support, I will let you know.

Until then, I am an outsider, an activist with her own rules.....and you should probably watch out.

6 comments :

Lydia Brown said...

Have you read Tom Shakespeare's Disability Rights and Wrongs? You might find it insightful on this topic.

Trance said...

How about a mix of both? Impairment is a thing; so is stigma. These two things contribute to disability. If a disability were all stigma and social barriers, then access would function as a removal of disability. Impairment is part of disability. If there were no stigma or barriers except the ones we placed on ourselves, that would mean that the impairment would have to be painful beyond a certain degree to be a disability. Impairment, social barriers, and pain from these things comprises disability. That's how I define it.

The Goldfish said...

Anyone who tells you that you shouldn't mind your impairment because it's society that disables you has the Social Model wrong. For me, the Social Model says we can feel however we like about our impairments - wish they didn't exist, strive for a cure, whatever. But the thing that unites disabled people are social barriers (different ones, of course), and we can only remove them by working together.

Doesn't mean our lives are the same, or that some of us don't really suffer - some really do, some really don't. But there's no reason to feel ashamed for the fact that, in a disability-free utopia, your life would still be difficult and frustrating.

However, much as I'm all for the social model, it is far more important that you let go of this shame than you embrace any particular model!

imfunnytoo said...

Yes! Yes! Yes!

I think the number and confluence of impairments have something to do with it; once you reach a certain critical mass, you spend most of your day *doing the things that ameliorate the physical problem....*
If the physical (or mental) stuff multiplies enough to swallow up your time, how in the world can you say... "Oh ramps and explaining that we're actually people will fix everything.

my take on this idea awhile ago:

http://midlifeandtreachery.wordpress.com/2013/05/08/falling-short/

nightengalesknd said...

This is really timely for me since this weekend I'm supposed to put together something about models of disability (and more generally "conceptual framework" about disability) for health care student curricula.

I was going to use the medical model, the social model, and the biopsychosocial model from the WHO. I may try to squeeze the rehab model in as well. The medical model is the one to teach students not to use, but it's not like the others are marvelous. It's sort of like democracy being the worst form of government, after all the others. I want to teach students something they can understand, but not to oversimplify to the point of uselessness either.

Because, yeah. Impairment definitely still exists after all possible accommodations are made and stigma goes away. Sometimes really impairing impairment, including some of mine. I still think making all possible accommodations and getting rid of stigma are important things, but not to the point of stating or implying that ALL problems related to impairment are socially constructed. My handwriting disability probably is. My diabetes definitely isn't, even as social issues also contribute to problems I have related to diabetes.

If you concoct an alternative model and get it to catch on, I'll promote it in our next round of curricular recommendations in a decade or so. Maybe the social/spoons model?

Margot said...

Thank you. I realized this long ago when I started working with you and our friends on the films. I will never be an able bodied person and no amount of social change/social experiment can change that. We will always be disabled. The way we feel about our disabilities is also a matter of personal responsibility. Society might influence us one way or the other but it is up to us. It's not just the ABs. You don't need to be part of a group or feel bad about not being in a group either. Just be Cara. That's all you ever needed to be.