May 1 -- BADD -- Fear, avoidance, and the people we never get to know

Fear of disability. Fear of disabled people. For the most part it never shows up on this blog except when myself or a commenter becomes the subject of it or it's in the content of news stories, probably because the people who choose to comment here self select with at least the desire to be disability positive. And I think that's true in most situations on most disability blogs -- someone uncomfortable with the topic and the people whom the topic is about might click into the site but not stay to read. In three years blogging at The Gimp Parade, I do not believe there is a single comment here where someone admits to a personal fear of disabled folks or disability.

This comment is the closest expression (that I can recall, feel free to roam the archives and prove me wrong) of the fear we all know is out there acting upon so many of our daily interactions with people. It's from my post last year about meeting a mom and child in a grocery store:

Anonymous said...

I think it is cool that the mother stopped you and explained to her daughter in basic terms why you had your scooter, instead of schooshing her quietly away. In a way i think it may be a hard thing for allot of people to explain disability(s) to their kids because they do not know enough information and/or are uncorfortable adressing the subject. in some ways it is allot like parents adressing the sex issue at home. some hate to discuss the issue at home.

I was guest posting then at Alas, A Blog, and that same entry over there did get comments openly expressing the fear of disabled people, which is the post's topic, after all.* It's a whole level of discussion that apparently-nondisabled people felt comfortable sharing at Alas in response to that post (and many other posts there), but never once here where battling disability prejudice and discrimination is a main and relentless topic.

At Alas, commenter Raznor says:

It seems that people just don’t know how to handle disabled people. I think most able people, and I include myself in this, feel uncomfortable when they see disabled people - at least those who don’t see them often in their everyday life.

Little Light responds:

I’ve suspected for a while, Raznor, that it comes down to a very basic thing, one that I’ve picked up more from working around death than anything: seeing the realness of disability and acknowledging that it’s something real people have to deal with is, to most able-bodied people, a terrifying reminder that it could be them, too. It’s the same fear as the fear of the elderly or obviously ill, a sort of contagion of mortality, and in our culture, the able-bodied will generally do just about anything not to think about those things. I may be a newcomer to ability-issues stuff, but I took a shine right away to the use of the phrase ‘temporarily able-bodied’ to describe people like you and me.

Some degree of needing to worry about ability and disability on a personal level is inevitable for even the halest-and-healthiest, and I’d argue that it’s fear and arrogance, most of all, that keeps us from acknowledging it and maybe looking into helping society better serve those of us not currently in the able-bodied column.

Dealing with issues of privilege requires real empathy. And it’s one thing to empathize with people belonging to a category you never will or never can. It’s another to empathize with people in situations you could very well be in tomorrow and still acknowledge your privilege. If you’re pushing to make your office building more universally accessible, how far do you have to go from thinking, ‘Boy, this isn’t fair, imagine how much of a pain in the ass this would be if I were using wheels’ to ‘I could be using wheels’? Right away, because of the necessary empathy, you’re dealing with thoughts the average able-bodied person doesn’t like dealing with. The only way to insulate themselves from those thoughts is to shut off the empathy. And right there, we’ve got a problem.

(Well, probably the problem. But that’s another argument.)

For all the progress that's been made publicizing disability issues and having disability be considered an issue of social justice on some mainstream liberal blogs -- or liberal feminist blogs -- there seems to be very little self-reflective discussion of ableism and the fears that drive it by nondisabled folks. It's easy to find some men blogging about their gender privilege and doing quite a bit of self-analysis as they support or struggle with feminist ideals. And there's lots of liberal white guilt blogging going on about race issues. Also, straight, nonqueer folks, including me, blog now and then about heteroprivilege or genderqueer issues, trying to work it out in our own heads. People are openly wrestling with those issues and their relationship to them.

So where are the self-reflective posts by nondisabled folks about ability, bodily privilege, fear of people with cognitive disabilities, or even angst about becoming impaired? Where is the recognition of participating in and privileging from an ableist culture? If that awareness of personal ableism exists, why doesn't any of it bleed into the comments on my blog or those of my disabled blogger friends except during explosive debates like the Ashley Treatment?

Yesterday, Hugo Schwyzer, whose blog I deeply enjoy, wrote a post called "A note on virtue, exercise, and disability: a response to Mr. Soul" in response to an email where Mr. Soul offered this challenge:

I see that you have blogged extensively about what you call “mental illness”–but you never use the word “disability”–and have zero entries (in how many years of blogging?) about disability or disability rights politics. Do you think your dislike of using the term disability, or the subject of disability itself (as evidenced by the way you have consistently ignored the topic) has to do with your fitness obsession, and the way you conflate a healthy, fit body with godliness?

Mr. Soul occasionally comments here and I know him to be a self-identified lifelong disabled person from the American South. He sends me intriguing emails too, and while I can't speak for him, I found Hugo's post extremely frustrating in the way it "responded" to Mr. Soul's email, but didn't actually address it.

Hugo is the very definition of a self-reflective politically liberal blogger, and although he writes:

It’s true I don’t blog about disability issues. To be fair, I never intended this blog to be about all possible social justice issues. At its core, this blog reflects my own passions and interests, which tend to revolve around sexuality, gender, faith, and animal rights. I hardly ever blog about the Iraq war, for example, because I don’t think I have anything original to say on the topic. (My views are generally in line with those of, say, Dennis Kucinich, but he knows more about the topic than I.) The same is true of disability; it’s not something with which I am wholly unconcerned, but it is a topic about which I am sure I know less than many other fine bloggers.

Mr. Soul's question seems a fair one-- for Hugo and for all the people who regularly muse about other social justice issues from a very personal perspective. Hugo could have answered that he implicitly discusses disability from a social justice perspective in many of his posts on mental illness, but instead he focuses mainly on his belief that fitness is a virtue. It's disappointing that he doesn't address the actual point I see in Mr. Soul's question, and I don't mean for this post for Blogging Against Disablism Day to be an attack on Hugo Schwyzer or any one person, but here's what fascinates me:

At some point in the last few months of thoroughly enjoying Hugo's thoughtful writing, independent of any conversation about him with Mr. Soul or anyone else, I'd mentally categorized Hugo as one of those generally open-minded men who would have no personal interest in knowing a disabled woman like me. Now, it's very possible I'm absolutely wrong about that, but there are legions of people in the world who would not easily choose to know and befriend someone with obvious visible bodily differences. Or mental differences either. The mental category of "those who would not choose to befriend me because of my disability" exists in my head because of personal experiences that caused me to create it.

Our identities too often rely upon social categories -- and affirmations of the ideals that go along with those categories -- which alienate us from the categorical Other. Hugo's concept of fitness as a spiritual and social virtue cannot easily embrace the reality of the involuntary "unfitness" of those of us disabled folks who cannot ever expect to physically meet those fitness ideals without some seriously creative re-imagining of what "fitness" might be. (I wouldn't advocate that re-imagining, by the way, though that's not what I want to talk about here today.)

On the visits to medical specialists throughout my childhood, my parents were inevitably asked how I was doing intellectually in school. While I have never personally met a person with muscular dystrophy who seemed cognitively impaired, medical literature does link the physical impairments with possible developmental problems, so the doctors' questions were meant to slot me into the diagnosis. Literally at the very top of my class throughout grade school when these questions were being asked, I learned to value my intellectual capabilities as a sign of my own normalcy and inherent worth. Being able to report to the docs that I got the highest scores in my class on math and language tests meant I was not as flawed as they thought I might be. And there's really no way for me to say that honestly without admitting that my fear of abnormalcy and my desperate need to be seen as excelling intellectually required I see people unable to do so as different from me, less relatable, less valuable, less virtuous even.

I'm not cured of that thinking. In the same way, I won't ever be "cured" (ironic word to use, eh?) of the racism or heteronormative thinking society has imbedded into me. I do try to work on it, and despite my hierarchical disability thinking from the earliest ages, I have always been aware of the isolationist, exclusionary results of ableism. Before ableism even had a name.

My twin sister had epilepsy as a child, and while there's been no sign of it for a couple decades now, she spent our entire childhood on anti-seizure meds -- barbituates -- that created learning difficulties for her in school. Imagine learning your multiplication tables while experiencing the daily highs, withdrawals, and chemical brain changes of barbituates. My closest human bond is with my twin, and yet I didn't know she was brilliantly witty until our college years, when she was able to give the meds up and remain seizure-free. I'm proud and lucky to know her as an adult, but I was there in her life every day when we were kids and did not know that other person she was. And not just because of the drugs.

This is incredibly tender territory for my sister and me. As invested as I was in creating normalcy through academic achievements, I would not have chosen to befriend my sister when we were children and she struggled to learn and create social relationships. My own place in the adolescent social structure was too shaky because of my physical impairments. Like every self-conscious kid subject to the cruelty of my peers, I spent my time trying to fit in and be like everyone else, and my being the "smart kid" was my ticket in. In fact, there were occasions that I was important to many of my peers only as a source of test answers or a measure of their own academic competence. Memory of my tenuous place in the social scene is not as painful as the tension it created between my sister and me. Happily, we've worked through much of that.

Fast forward from my childhood to the last decade and the half dozen online feminist bulletin boards I've participated on over the years: I've left two of those communities because I was the sole woman identifying as disabled and didn't feel my perspective on ableism was welcome enough to post my thoughts and experiences safely. On a private board I still belong to there was once a discussion (I forget the exact topic) that evolved into several women noting that they would never date or marry someone with a serious disability. They were categorical about it. It was an automatic "no, thank you."

It's not that I don't have my own subjective mental list of what I'd want in a mate, but my first reaction (which I posted) was "Hey! There's life on this side of the divide!" I also noted that this prejudice against even considering a disabled partner is the reason the odds are greatly against my ever having a life partner. "Never, no thank you" is a pretty strong bias to get beyond, even if I'm as charming as I think I am.

All these threads of disability fear and avoidance have been in my head because of this second annual Blogging Against Disablism Day. Who participates and who reads what is written will be self-selected according to who wants to confront their fears about disability, and who lives within the social consequences of disablism -- or ableism, choose your preferred term. There's enough variation in bodies and minds that most everyone lives on both sides of the divide according to someone else's subjective mental list. I can't help thinking about those who've missed out on knowing me, and those I chose to never get to know.


* It's not very important, but as long as I'm directing people to those comments from my guest post at Alas, I want to note that comment #13 is a trackback from someone else even though it appears to have been made by me. My comments at Alas show up under my old internet nickname Blue or Blue Lily. I think that comment was posted from a nice little blog called The Belonging Initiative.)