Closing Fissures/Blogging Against Disablism

Every so often, I fall into a community fissure so deep that it shocks me.  This post is about what I will call hierarchies of function.  It's where disabled persons seek to separate themselves from other disabled people on the basis of function and/or some social judgment about function.  This is internalized ableism; it wounds us when we learn it from the non-disabled world, and it wounds us when we inflict it on others in our community.  Internalized ableism is one of the worst forms of disablism: if we cannot be good to each other, who will be?

Hierarchies of function are hard to talk about.  I can't even find language that I like very much.  My choices are somewhat limited.  Should I be talking about function?  Ability?  Impairment?  Capability?  I don't know.  These are all loaded words with deep and problematic histories in the disability community.  What about words like profoundly, significantly, or severely?  When we attach them to our impairments. What are we saying when we say someone is profoundly deaf, significantly disabled, or severely depressed?

Compare these two awesome paragraphs from Storm Reading by Neil Marcus:

The playwright is afflicted with "generalized dystonia," (dystonia musculorum deformans), the most severe and painful form of this disorder. It denies his ability to speak, stand, walk and/or control sudden and sometimes bizarre movements.
...
Playwright Neil Marcus has flourishing dystonia, a neurological condition which allows him to leap and soar and twist and turn constantly in public, thus challenging stereotypes of every sort and making him very interesting to watch and sit next to during lunch hour. It rides him like a roller coaster at times.

How we describe our impairments matter.  It's not just a distinction between medical and non medical language; it's also about how we handle the social and cultural judgments that come with language.  If flourishing dystonia doesn't make you think again, I don't know what will.

So, for the moment, I'm going to go with function -- not because I like it or because I believe it is the best word, but because it is one of the worst words.  Function, to me, comes from some of the most difficult parts of the medical community.  I'm choosing it, today, because it suits my purpose; it underlines my point.

My post is about not separating ourselves on the basis of what we can and cannot do.  So, I use function as a way of reminding myself of the connections between medical assessments, the life consequences of those assessments, and the social values and cultural beliefs that surround our assessments of what we can and cannot do.  I am going to avoid adverbs suggesting "severity;" I want to find a mild neutral in how we handle disability language.

Classification by ability structures so much of disabled life.  No doctor ever asks, "how good is your impairment?"  No, the evaluation structures always require negative assessment.  So, you go to the doctor; the doctor makes judgements about how mild/severe/bad (what is the best way to talk about this?) your impairment is.  You then take that judgment with you to the next stage; your medical evaluation becomes part of your request for services, accommodations, assistive technology ... whatever.  What you get, how you might be able to live is connected to how "bad" your impairment is judged to be.

I often discuss my ideas, fears and concerns in community.  When I raised this particular question, one wise friend suggested talking about access.  Access changes how we think about the problem.  Instead of looking at the failures or successes -- by which I mean capabilities, capacities, abilities, or, even functions (not that any of these terms are any less problematic -- of an individual body, access enables us to ask whose bodies is our society able to accommodate and why.  Who do we choose to exclude from public spaces, public activities and why?  A focus on access takes away the question of physicality and looks to the structural mechanisms that make it possible for people with some kinds of impairment to be less welcome in their world than others.

But the meat of this question for me is how ableism gets inside us.  It's in the little things.  It's in the -- at least, I don't have ....  it could be worse .... the not speaking up because, well, we managed, though someone else might not have ... the I'm lucky... and, most importantly, in our fears for ourselves and for others ... I believe that we internalize the assessments and our society's judgments about our bodies -- I'm not so bad; others are worse; it's societally bad to be physically worse; I'm not so bad; I can do more; ... breath ...  I'm better.  I'm not like them.  And then, when the poison has got inside us, we hand it on to others.

We none of us, of course, are like "them."  Whoever they may be.  And even if we share the same diagnosis, what we are talking about is not so much the lived experience of impairment but the societally learned assessments of that impairment.  Take, for example, our fear of "tubes."  So many health care directives and television shows teach us that tubes are to be feared.  Compare that with this, by Kay Olson of the Gimp Parade:

Surprisingly, I find moments of enjoyment in my ventilator and feeding tube now that I have both of them. If I exert myself doing something and get short of breath, I can simply lean back in my chair and wait until the ventilator helps me catch my breath. It's not resting in the same way a nondisabled person does after he's been working out. You might say it's lazier than that, an anti-athletic recovery that doesn't require me to do anything.

Likewise, at night, when my PEG tube is hooked up to a slow drip of liquid nutrition, there's a physical comfort to knowing my body is getting protein while I sleep. I could get the tube pulled if I wished, now. It's not absolutely required for my sustenance at this time. But it's a comforting back-up, that, along with a low cholestoral count and no concern about my gaining too much weight means that I'm curiously free of all concerns about my diet that most other women struggle with daily.

It's an old post from 2006, but it was one of the first I ever read around disabled pleasure.  I love how the very things that people choose to run from in advance health care directives are the things that give Kay pleasure.  Her words ask me to consider how we talk about impairment without adding assessment and hence valuation.  Her words ask me to look to my life and take in the things that I find pleasurable.  And from pleasure, I move to community and to what I see as an essential element of belonging to each other: our responsibility to treat each other as we would like to be treated -- even if we don't know each other.