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.

Identity Theft

I've been aboard this plane for many hours now; the sun has slowly set; the dark is clear and oddly bright.

In the wake of what we have discovered to be an incident of identity theft (sigh, stress, sigh), I've been wondering all trip about where our identities lie resident.  We acquire so many different ID's; I think of how many email addresses I have, online identities, national and state identifications.  Licenses that are ID's, names, nick names....  You get the picture.  I've been trying to sort out the confusion by distinguishing identities from identifications.

Identity theft is not funny, by any means, but I alternately amused and terrified by the idea that my identifications could be stolen from me.  Who would take them?  Could take them?  How might they start?  I see theft as different from erasure; believe me, I know how *that* happens.  So, I have begun to reframe the question.  Instead of thinking about theft, I have begun to ask where am I resident?

I am resident in my real life at home.  That's partly in my relationship and partly in our physical space.  I think it is probably easy to imagine how any of us could grow into and with our partners; it is still surprising to me to find that architecture can be a significant contributor to my sense of my life as meaningful.  The spaces I live in literally and figuratively "house" me and my body.  And being able to live, work and move in such spaces has given me a kind of expansiveness that I can bring to everything else I do.

I am present in my dancing, but not I think resident.  I don't know what to make of that.  Perhaps, it is one of the things I should work on.  Perhaps it is a sign that I am not run by dance.  Either way.

Oddly enough, this blogging persona is a useful place for me to check in with myself about such things.  Tomorrow is my 5 year blogging anniversary.  Hooray!!  Wheelchair dancer was just a name I gave myself five years ago for a place where I recorded what I did and ranted about disability nastiness.  Over time, though, I think the posts have revealed a strong and consistent personality.  Only a small portion of my life and thoughts end up on this blog, but those that do reflect, for the most part, the person I would like to be.

Stealing my identity and my identifications is more than getting my user name or even access to my financial details.  To actually steal my identity you would have to claim my identifications and live as me, with them.  

Expressing Anger??

I feel like delivering some version of the "'we will fight them on the beaches' speech."  I've been thinking about a comment on a post a couple of entries back.  Anonymous writes: "You sound really afraid of people's reactions. I thought maybe you were a newbie to crip world but your profile says you've been doing this blog for seven years."

That got me thinking. I haven't actually been blogging for seven years; there was a previous blog that I deleted. Wheelchair Dancer goes back to 2006 (anniversary is Monday, Wizard reminds me).  The first part of Anon's comment is about reaction.  My reaction to other people.  It would be dishonest of me to say that I didn't care about that.  I do care.  A lot.  I care about how the things that mark me as different are read.  I agree that it ought to be possible to go through life with a kind of "dammit, I'll do it anyway" attitude.  But that's not me.  (Is writing this whole post a fear of reaction?)  I do worry about reaction -- in the way I dress and speak; I carefully manage my appearance.  It's kind of a personal defence philosophy: if you can manage reaction, you won't experience prejudice.  When my attempts fail, I do get angry.  

In some ways, Anonymous is right: my early posts were often about this anger; there were posts about angry interactions with people on street, in stores, in the subway, coffee shops, parking lots .... you name it. My favourite of this kind is from 2008: a Whole Foods scene. (That place just seems to bring out the entitlement in people, including, it seems, me.)

But, in some important ways, I think Anon has it wrong.  I think anger is important.  It isn't only newbies who have these experiences and get angry (though, as you look at people starting their blogs, there is a lot of those kinds of entries).  It shouldn't have to be the case that you get used to the ugly stuff to such a point that you are no longer angry.  I've written some fairly sophisticated angry pieces (a fave is here, also from 2008 -- guess it was a good year), but I don't know why sophisticated or, for that matter, experienced anger is significantly better than newbie anger.  They can be different, yes, but one isn't necessarily better than another.

And then, there's the way these things happen.  The first one hundred occasions may not bite the deepest, but the smallest and least of them all can sometimes be the worst.  Some what later in the history of this blog are a series of entries on how to make these interactions go better.  What can one say to change people's minds.  How could I, personally, facilitate change? (Can't find them, but they were probably also from 2008, smile.)

I realized as I was writing the post that it was different from a lot of my more recent posts, but I did want to have it there.  I stopped writing about the daily microaggressions, because they weren't definitive of me or my life.  I didn't want to keep writing the same rant over and over again -- as important as it was.  And when I stopped writing those posts, the blog began to take on a more theoretical aspect.  But the experiences didn't go away -- nor did the anger.

I believe that having that anger and expressing it are important.  Being able to express those feelings neutralizes them.  I am then able to see and create a more complex analysis of the systems and structures -- the concepts and abstractions -- that shape and surround my  life.

Thinking About Connection

Many of us -- for even though we don't know each other, I think of you and me as an us -- are here because we acknowledge some connection to each other that is shaped by the word "disability."

What that word means to each of us, how we experience it, how those around us interpret it, how the people we interact with on a professional basis see it is different.  It's so different that disability can seem to divide us, isolate us, separate us from the rest of the world.  And yet.

Somehow, disability connects us.  And what does that mean?  How can we be in community with each other?  Can we welcome each other, even as we hold each other accountable?  Or do we gatekeep?  If we limit who we think we are, what does that do to our sense of ourselves and, ultimately, to our connection to each other?

Choosing Disability Again And Again

Becoming disabled and living disabled seem like they should be one time only events.  I know they aren't; in fact, I know that they couldn't possibly be.  But they seem like they should be.  At least, that's what I told myself; it was important to me that once I adapted that everything would be all right, unchanging, stable.  Believing that has helped me to adjust and adapt.  For the past three weeks, I have been injured.  The pain has set free all the fear.

I could have used my voice recognition to type, but the pain in my arm sapped my brain, my energy and created a whole lot of fear.  Fear about injury vs disability, fear about the permanence of the pain, the weakness of my arm, the loss of mobility, and the difficulty of telling the difference.  For me, there's a moment where each injury seems to be a new disability.  Each of my injuries has impacted my mobility, and each injury is intimately connected to and exacerbated by my disability.  (It's not quite that I get injured because I am disabled, but sometimes, it feels that way.)  Each injury brings a new body; I wrestle myself into figuring out how to live with it.  Then, when it seems like I can live like "this" -- whatever that maybe --when I accept that the injury might be permanent, I can find it in myself to do the work I need to heal.