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Disrespect or disability?

September 14, 2010

I was catching up on some older posts, and ran across an untitled one from Amanda at I’M SOMEWHERE ELSE that caught my eye. It was a response to a BADD post at FWD/Forward, Do You Need Assistance?, with suggestions on how to offer help in a respectful manner. The theme sounded very familiar indeed, with concerns about how one’s own disability might lead to behavior being perceived very differently from how it’s intended:

This is definitely a very small part of what is otherwise a great post, but it’s something that Zoe (zheyna) reacted to, and she pointed out in comments that as an ASD person she doesn’t necessarily look anyone in the face. (I have a very singsongy voice, so that’s what stood out to me.)…

I consider myself disabled but in that situation, where I am offering help to someone, I’m not going to be read as “another disabled person” by the wheelchair user. At worst I’m going to be read as an asshole because of my singsongy voice.

There are some very interesting comments on the original FWD/Forward post, expanding on this theme.

From zheyna’s comment:

It just bothers me to see eye gaze, body language, and tone held up as indicators of respect, especially in conversations around disability. I don’t make eye contact and often I don’t look at people at all when I speak to them. My body language and tone don’t always fall within the socially-acceptable limits for the situation I’m in. I know a lot of other people have similar experiences.

Sometimes people think that all of this means that I don’t like them, and that saddens me, just as it would sadden me if I offered someone assistance and they interpreted my non-standard gaze/tone/body language as condescending. The thing is, though, this is not my faut. It’s not my responsibility to change my communication so that I don’t make people uncomfortable. It’s the responsibility of society in general to make communication more accessible, and to be more accepting of people with different communication styles. I think that if people stopped equating eye gaze, body language, and tone with respect, it would be a good step in that direction.

Shiva adds (emphasis mine):

However, i think sometimes this sort of thing falls under “unavoidable impairment clashes” – i remember one incident (on a DAN action ironically enough!) when i was giving some fairly crucial information and a deaf (small d as AFAIK not a sign language user) person said “I’m deaf. I can’t understand you unless you look me in the face while speaking to me”… my reply was “I’m autistic. I can’t look you in the face and speak to you at the same time.” Something of a stalemate ensued – i think i managed to look close enough to hir face while speaking for hir to lipread me effectively, but it was awkward, and made me feel like i was being oppressive by nature of my own impairment.

I’m not interested in rehashing the apparent misunderstanding that prompted Amanda’s post. What caught my attention was the general theme of being misunderstood as disrespectful and/or some kind of biased shit because of one’s disability.

This potential sometimes concerns me when I’m dealing with other people, especially ones who are sufficiently different from me in some ways our society considers important. Or at least apparently different, as in the example of “invisible” disabilities, being “invisibly” multiracial, etc.

I’m autistic. A lot of people consider my body language, facial expressions, and eye contact patterns disconcertingly “off”. And too many people have assumed that I was acting weird on purpose, as a show of disrespect or out of who knows what projected motives. I’ve certainly gotten to hear some bizarre ones, and those are just the ones people have told me about. My usual quietness and speech patterns also come across as strange, and have helped me be perceived as standoffish in a bad way. Sometimes, speaking extemporaneously, things come out of my mouth which are not well thought-out and may have very little to do with what I’m actually thinking; this gets much worse under stress*. To avoid this, I just clam up or go overly stiff and formal, neither of which usually comes across well. Expressive language, especially realtime, is not my forte. All of which helped me become much more socially awkward and worried almost to the point of paranoia about Getting Things Wrong. PTSD doesn’t help the situation.

Basically, not understanding why someone else’s behavior seems “off”, some people make sense of this by interpreting it as all about them, and assuming the worst possible motives.

These things have been a problem when dealing with middle-class, White, cis, het, TAB (did I leave anything out?) people who assume that their characteristics are the default–and rightly or wrongly assume that I share them. Now just imagine the effects of throwing in some very good reasons, based on experience, that someone might assume that any weird behavior on your part is coming from disapproval of and/or discomfort with their Characteristic X (and possibly Y and Z, intersectionality being what it is). Impairment and disability can get confused with privilege.

I have noticed this happening on multiple occasions. And I can understand why. And the disconnect with my intentions has frustrated and upset me enough that I have turned even more socially awkward in certain situations, and thus more liable to come across as some kind of disrespectful, bigoted jerk.

The worries about Getting Things Wrong–really more getting embroiled in misunderstandings that I have very little hope of straightening out–has also made me very wary of a number of activist communities. Especially with some of the dynamics which have been discussed many places recently around callouts and pileons. I’ve been on the wrong end (is there any right one, in some cases?!) of similar, and also had my difficulties making an intelligent accounting of myself or defending myself verbally used as both excuse and tools for bullying. (Not to mention the situations in which I pointed out a real problem or called someone on their nasty behavior, so they’ve turned it around on me and taken advantage of my difficulties to get me vilified and piled on.) It does happen in about any sort of group imaginable. And it is an accessibility issue on multiple levels.

And, yeah, I’m kinda concerned about things I’ve been writing–including but not limited to this post–coming across in ways I never intended. Including my coming across as a member of the “Waaah! Why are members of $GROUP so oversensitive and insistent on taking everything the wrong way?” brigade.

Clamming up is not a reasonable answer.

_____________

* As AnneC put it in one excellent post, “Don’t Worry, You Sound Fine!”:

So, basically, when I say that I’m concerned about how I’m going to come across when I speak, it’s not about my having “public speaking jitters”, or worrying about looking dumb, or anything of that nature. Rather, it’s about knowing that my “speech module” doesn’t automatically engage with my “thinking module”, and hoping to find ways to avoid having this lead to problems.

Exactly. And so many bells went off when I read one of her own comments on another post about communication, Writing and Speech are Two Different Things:

For me there’s also the fallout from a bad childhood habit to deal with — that is, for a long time I didn’t really know that deferring a question for later or saying “I need to think about that” was an option, so I would often just throw out semi-random phrases in the hopes that I’d happen upon the right combination of words to satisfy the other person (so they’d leave me alone).

I’ve encountered a few others on the autistic spectrum who describe having had similar experiences, and I bet this tendency/habit probably accounts for how some of us end up misdiagnosed with “thought disorder”. There seems to be a tremendously pervasive assumption amongst many that speech (as opposed to writing or any other potential form of communication) is some sort of “window” into a person’s actual thought processes, when in fact for some of us, trying to force our thoughts into speech in realtime results in obfuscation of our thought processes.

(A doctor I saw once (not a psychiatrist — he was actually the MD at my college’s health center) commented that I seemed to display something called flight of ideas in speech, and while he didn’t go on to try and refer me to have my head examined (so to speak), I was quite thoroughly weirded out when I looked up that term and saw what it was associated with.)

No freaking wonder I got diagnosed bipolar with psychotic features after I burned out of college! (In spite of repeatedly saying “I have never experienced anything like a manic episode.” As I was sitting there vibrating with anxiety, ticcing, and not making much sense.) Getting what I’m thinking and what I’m saying matched up is difficult enough anyway for realtime conversation, but when I’m overloaded, overwhelmed, and under stress–such as in a psychiatrist’s office getting asked nosy questions by someone who is convinced there’s something bad wrong with me from the get-go? I go into Bizarro Babble Mode when people expect me to speak. A lot of the time, I am mortified but cannot stop the babble coming out of my mouth. And I have a lot of sympathy for one great-aunt who stayed overwhelmed enough** that she basically lived in Bizarro Babble Mode (yeah, I apparently sound “just like Aunt J.” with it, and that was never said like it was a good thing). And people who cared about her had no idea what was going on, and discounted her intelligence and found her annoying to be around.

** Another case of a disabled person feeling like she didn’t have much/any choice but to stay in an abusive marriage. And probably feeling like it was all her own fault for being so “difficult” and even stupid. It makes me really sad and angry thinking about it.

4 Comments leave one →
  1. September 15, 2010 3:46 am

    Yes, to all of this!

    I also clam up a lot, especially when there is more than one other person present and talking. Part of this is because I have to wait awhile between when the other person is done talking and when I start talking, both because I need to make sure they really are done talking, as opposed to just pausing, and because I need time to come up with words. (Sometimes, I need lots of time!) The more people are present, the likelier it is that I will *never* find a big enough lull in the conversation for me to speak into.

    I also use a lot more energy when more people are around, whether I’m actively engaging with them or not, because I can’t screen out any sensory stimuli, so I’m pretty much paying full attention to everyone who is within sight or earshot of me. If there’s a lot going on, I have to monitor all of it — I can’t allocate my attention however I would like — so I may not have any brainpower left over to respond to, or even properly comprehend, whatever is being talked about.

    (People have occasionally misunderstood this hypervigilance and constant monitoring as a sign of fear. Really, I am a very un-fearful, un-stressed person, and am confused when people seem to think I am agitated. It’s actually only recently that I came to suspect that they were reacting to my always looking around/reacting to irrelevant sounds. These are things that most people only do when they are very preoccupied about something, but of course I do them all the time).

    • urocyon permalink
      October 1, 2010 1:33 am

      Sorry, I thought I’d already replied!

      Oh yeah, I know what you mean about the hypervigilance. In my case, it’s enhanced by PTSD, but most of it is just not being able not to notice things.

      If there’s a lot going on, I have to monitor all of it — I can’t allocate my attention however I would like — so I may not have any brainpower left over to respond to, or even properly comprehend, whatever is being talked about.

      Yes. This is a major reason I tend to clam up in crowded, noisy, or otherwise overloading situations. This can lead to some anxiety after a while–especially if other people are reacting negatively to it–but it’s not anxiety to begin with, as mine has been interpreted in past.

      It’s actually only recently that I came to suspect that they were reacting to my always looking around/reacting to irrelevant sounds.

      That makes a lot of sense. I’ve run into similar, as well.

  2. September 15, 2010 4:35 am

    A++
    I think that accessibility and anti-ableism can be so radical when it comes to disabilities that affect body language and communication that they eventually will/should transform the whole idea of what’s “polite” or “appropriate” behavior. Does that make sense? I mean, the idea that you should talk a certain way and use certain body language is so ingrained that a person who I believe actually has ASD wrote that original “do you need assistance” post, which assumes that standard body language and speech equals respect.* It sets up huge barriers for people who can’t be standard–it basically dooms us to being unprofessional, lazy, apathetic, prejudiced against various visible minority groups, drunk, rude, etc.–whatever other people think we look like we might be, based on our movement and the way we talk. But I believe that idea can eventually be destroyed.
    (I talk flight-of-ideas style/bizarre babble mode, as well. Although for me I feel like it’s more naturally the way I talk than a result of stress; it just comes out that way and it takes work to actually compose it first. So I end up either talking in a very disorganized way, or in a way that is unusually specific and clean.)

    * As I said in my post, I love a lot of that person’s writing and wasn’t intending to declare war by pointing out my and other people’s problems with that passage. Just saying that again over here because I would feel bad if it came off the way.

    • urocyon permalink
      October 1, 2010 1:17 am

      Sorry, I thought I’d already replied!

      It sets up huge barriers for people who can’t be standard–it basically dooms us to being unprofessional, lazy, apathetic, prejudiced against various visible minority groups, drunk, rude, etc.–whatever other people think we look like we might be, based on our movement and the way we talk. But I believe that idea can eventually be destroyed.

      I certainly do hope so, ingrained as it seems to be. You summed the problem up very well, and I can’t add much! I wish I knew what to do to help change this.

      (I talk flight-of-ideas style/bizarre babble mode, as well. Although for me I feel like it’s more naturally the way I talk than a result of stress; it just comes out that way and it takes work to actually compose it first.

      *nods* I do too, but am usually able to compose it somewhat in public, or just keep quiet–though this ability varies wildly depending on what else is going on. (I don’t bother when I’m at home, which is a huge relief! My SO is used to it by now, and so was my family before. They should be!) When I’m under enough stress, not only does the ability to compose break down, it starts sounding like pressured speech sometimes. (Which is at least as relevant to apparently coming across as manic before, when I wasn’t.)

      I ran across an interesting page: Disorganized,Rapid Speech Is Not Necessarily Mental Illness. The “cluttering” mentioned there sounds a lot more like what I do–and no wonder! “Speech is often at its best in a structured situation in which the person is actively monitoring it, such as when being videotaped. Speech is often at its worst when the person is more relaxed.” Actually, the video is a bad example since that makes me really nervous, but otherwise it fits.

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