Tag Archives: communication

Tasting Fear

[This here is a warning that the author has written a post about, amongst other things, being depressed and suicidal. For this reason there is a clicky thing. Use it in whatever health you got. Also please note that with respect to my wife and our marriage you are getting exactly one perspective–mine–and everything is filtered through my experiences of abuse. This is not an objective reporting of events.]

Y’all who’ve been following this adventure know I’ve been fucked up for a while now. It’s been next to impossible to get any work done–it took me until five-thirty this morning to get caught up on my inbox. Today I got to explain why I should keep my job. On the phone. I don’t know as I was very convincing. Being highly ambivalent about wanting to keep it at all isn’t helpful with the convincing. Nor the panic that comes with phones, the stammering dysphasia aphasia that is so heavily influenced by stress.

Maybe I’ll get to keep it through the end of the month. I keep telling myself I should be at my desk now working.

I’m in bed with the notebook and I haven’t gotten dressed. I woke up six hours ago. Read more: Tasting Fear

This is Why We’re Always on about Language

I’m not linking to the original source because the specifics don’t matter. This isn’t about the individual people or the individual documents involved. This is just an example of how the use of ableist language harms disabled people. Sometimes our posts on ableist language are on the abstract side, so here’s something real concrete. The ableist language is “insane” used to mean “this is bad.” The disabled people are me and everyone else who has been abused and has mental illness.

Some context is necessary, though. The first quote is from the comments thread of a post on intimate partner abuse. More specifically it’s about the way people outside the abusive relationship contribute to the abuse. Even staying “neutral” or “not getting involved” contributes to the abuse: when power is unequally shared among people in a relationship, staying neutral is siding with the person with the most power. But much of the time people don’t stop with that much. They actively side with the abuser. (The reasons for this is a subject for another post. Graduate degree dissertations. Books. I’m headed in a different direction right now.)

One of the commenters expressed disgust with the people who’d taken the side of the abuser and ended the comment with:

How insane is that?

Here’s my reply.

It is appalling, frustrating, disappointing. It makes me want to cry every goddamn time I see it because I know my abusers are fine upstanding successful people and I’m fucked up and broken and poor.

It is not insane.

I am insane. I have had delusions and paranoia and hallucinations. There are parts of me I do not talk about ever because I am deeply ashamed of them: what’s wrong with me that this is in me? How can I be this fucked up? I spend every day working on not killing myself because the parts of me that hate me and want me dead never shut up.1

I would like, please, to not have to be the metaphor for abusers and their abettors as well as their victim. I carry enough shame already.

This is why we talk about ableist language. It’s not because we hate fun. It’s not because we have no sense of humor. It’s not because we want to take people’s words away.

It’s because we shouldn’t have to be the metaphors for our own oppressions.

  1. Unfortunately, none of this is even exaggerated.

Who Killed Civil Discourse? Evelyn Evelyn, Marginalization, and Internet Discussion

Hello. I am Annaham (yes, I have a name). I am the person who posted a critique of Evelyn Evelyn on this website, which kicked off something of an internet controversy. For those who’ve just joined us, I made a post about Amanda Palmer and Jason Webley’s side project Evelyn Evelyn, Lauredhel made another post soon after, and things got a little out-of-control, to say the least. Because my post was part of this whole storm of various substances — both gross and not — I feel some responsibility to share my reaction to what’s gone down thus far.

I’d like to take a moment to talk about some basic principles of anti-oppression activism and social justice work that intersect with the work we do here at FWD, as some very specific structural issues and contexts are absolutely relevant in this discussion. Often, marginalized people are encouraged and expected to be sensitive and accommodating to the attitudes and prejudices of the dominant culture and to those of less-marginalized (ie: more privileged) people. However, this sensitivity and accommodation usually does not run both ways. Marginalized people, if they criticize something that (for example) leaves them out or makes them feel awful, are often told that they are being overly sensitive or overemotional, that they just misunderstand intent, that they are exaggerating, or that their tone is not polite enough. They are then expected to modify their behavior — and their self-expression —  to fit with the norms and values of those who are more privileged.

What the less-privileged have to say is usually not accorded much importance, critical thought, or respect, and yet they are supposed to prioritize, be patient with, and generally assign more importance to views, values and norms that are not their own. People in marginalized communities are often expected to educate the more privileged majority. They may be expected to patiently explain basic concepts, sometimes repeatedly. And if those with more privilege decide that they do not agree (with the less-privileged group’s tone, focus, or any number of other things other than the actual argument that is being made), those with less privilege are told, with varying degrees of subtlety, to shut the fuck up.

All the while, the perspectives, attitudes, norms and values of those with more privilege are made neutral. The power dynamics are rendered invisible, because that’s just the way things are, so there’s no point in trying to change any of it. Why are you so angry?  You’re just looking for things to get mad about. You just like being offended. Why can’t you focus on other/more important things? It wasn’t meant that way. You need to hold your tongue until you’ve done x, y and z. Quit taking it personally. You’re ruining everyone’s good time. Stop trying to make everyone pay attention to your pet issue, because it doesn’t affect anyone other than you. Your demands are unreasonable. Stop complaining. Shut up.

And when things don’t go entirely smoothly (which happens often), those not in a position of privilege are often blamed for it: Well, what did you expect, using that tone? You’re the one who brought it up; you’re the one who rocked the boat.

Unfortunately, these tactics are extremely common when it comes folks’ objections against many sorts of media and pop culture critique and/or backlash against critical engagement with cultural works. In other words: These are not new patterns.

I am definitely not saying that everyone has to agree with the critiques that I and others have made regarding Evelyn Evelyn; I am not suggesting that ideological lockstep is a worthy end-goal. What I am saying is that the humanity of marginalized people — those who have traditionally been left out, and who are often on the receiving end of justifications for said exclusion(s) — is not up for debate. The humanity of the participants in this discussion — that of the creators/artists, fans, and those of us who have come forward with critiques — is similarly not up for debate. What I posted, and what I am posting here, was (and is) my take on the matter. I do not, nor do I want to, claim to speak for all PWDs, or all disabled feminists, or all fans of AfP and/or Jason Webley who are also disabled or feminists, or both. We all have our different takes on Evelyn Evelyn and how things have unfolded, and I think it is a good sign that so much discussion has come from this.

As I have stated here on FWD and elsewhere, I am a fan of AfP and have been for a number of years. Many of the people who have raised concerns about Evelyn Evelyn are fans, potential fans, or former fans (and there have been solid points raised by non-fans, too). Dreamwidth’s Anti-Oppression Linkspam community has, at present, four roundups collecting posts on the matter from around the web.  I suspect that many of us who have posted on the Evelyn Evelyn project with a critical eye are not raising these concerns simply to bug or irritate Amanda and Jason, or their fans. However, there are quite a few people who seem eager to dismiss those of us with legitimate concerns as “haters” who just don’t understand art. The hostile messages from “haters” that Amanda has received are not legitimate critiques. These are personal attacks, not arguments of substance.

I almost feel like it should go without saying that I do not support people making these attacks on Amanda, but just to make it very clear: I am very much against people using this controversy — and the complex issues raised — as a bandwagon upon which they can leap to make personal attacks and/or comments about Amanda’s personal life or who she is. Unfortunately for those of us who have been trying to bring attention to Evelyn Evelyn-related issues and seriously discuss them, the “haters” are distracting from these same issues (and are apparently effective at it). I have also heard that people are making threats of physical violence against Amanda. That is not okay. It is never, ever acceptable to make threats of violence against anyone, regardless of your disagreement. That is basic human decency. It is truly disheartening to me, and to the other FWD contributors, that some are using this very difficult situation as an excuse to make horrific threats. We fiercely condemn these attacks.

One of the comments I received was from someone who, as far as I can tell, thought that my post seemed “insincere,” with a bonus implication that I was and am making other PWDs look bad “in the eyes of the abled.” Comments of this sort are often aimed at members of marginalized groups who are expected speak for everyone in their group when confronted; it basically boils down to “You are making other [disabled people] look bad.” I have to wonder why this same thing was not said to the AfP fans who found it necessary to show up here to derail, break out tone arguments,  tell me and my fellow contributors that we are crazy and/or should shut up, and who dismissed us on Twitter as just bitching about the project. It’s interesting, and rather telling, that some fans have used these tactics against me, my fellow FWD contributors, and other people who have critiqued the project, but could not (or did not want to) step back and consider their own behavior.

We were, in various other places around the web, called “retarded,” “angry bloggers,” had the legitimacy of our contributors’ disabilities questioned, and (trigger warning) threatened with rape (link goes to a screencap of a comment left on Amanda’s blog) — among many, many other things. In the comments thread to my original post, I was told that I need to focus on more important issues, that I was blowing things out of proportion, that I was censoring people and/or trampling on their free speech rights by laying out guidelines that specifically told potential commenters  to not leave derailing comments,  and that intent should excuse offensiveness. Eventually, I lost my patience.

There were also quite a few personal-attack comments left in the moderation queue; for obvious reasons, these were not published. These attacking comments were a significant part of why I closed comments on the post, though I did not explain that in my final comment. My decision was not about “censoring” what anyone had to say, or infringing upon “free speech” rights (this is a private website — one that has contributors, commenters and readers who are not only from the U.S.), or only about the fact that I lost my patience after having explained certain concepts over and over again; I and my fellow contributors simply could not deal with the personal attacks, threats, and violent language being left in the mod queue anymore.

Here is just a sampling of some of these unpublished comments from the mod queue (possible trigger warning):

“What’s the matter with you?”

“cant handle it? then just fucking die!”

“fuck u die slow nigga!”

“ONOEZ SOMEONE WANTED TO SMACK SOMEONE SUCH VIOLENCE!!! Typical retarded comment on an idiotic, stupid, moronic, weak, and lame blog. Fucking oversensitive twits.”

I think there is something analogous here to some of the more hateful comments that Amanda received on Twitter and elsewhere, but that is a bit of a tangent.

Going through the mod queue for that post was not an experience that I would want anyone to have. I could talk about the fact that it got to the point where it exhausted me to look at the comments; about the extreme anxiety and emotional hurt I felt while reading some of the comments that attacked me as an individual and/or questioned my mental health status; about how it feels to notice that your physical pain level — already there as a result of a chronic pain condition — goes up a few notches as you read criticism(s) directed not at your argument, but at you. I have a feeling that were I to discuss this in depth, some would likely construe it as “ANGRY BLOGGER BLAMES AMANDA PALMER FANS FOR HER OWN PAIN” or accuse me of using my disability as an excuse for being “too sensitive.” I get more than enough of that outside of the blogosphere.

I need a break from having attempted to be civil and polite and explain very basic concepts to a select few people who have no interest in substantially engaging with me or with others who have raised concerns about Evelyn Evelyn.  Simply put, I need some time to recharge my politeness batteries, as well as my hope that some people — and I include many of Amanda’s fans in this category  — do want to listen, learn and discuss without derailing or attacking. I wish I could address every critique that’s come our way, but I am pretty worn out (and I suspect that many of you — disabled and not — know the feeling).

In the interest of full disclosure, I should mention that Jason and I have been communicating via e-mail — he emailed me shortly after my other post went live — and discussing many of these issues in more detail; for that, and for his willingness to engage, listen, and consider the critiques that have come up, I thank him.

I wish Amanda and Jason success with their endeavors; I do not wish to shut either of them up or, worse, endorse that Evelyn Evelyn not go forward at all. There is, as I have said, quite a bit of difference between critiquing a portion of someone’s work and wanting to shut them up or silence them; I have aimed for the former. I ask, however, that they engage critically with and take seriously the numerous points that have been brought up, both about (trigger warnings apply to the first two links) specific aspects of the project and the response to critiques so far. Taking on such huge issues will doubtlessly be a difficult and ongoing process. Of course, Amanda and Jason will probably interpret all of this in different ways. What happens next does not have to be “perfect” — nor 100% Annaham-approved (because that would be unrealistic and silly), but it would be fantastic for these two very talented musicians and performers to bridge the gaps between their good intentions and what actually shows up onstage and on the album.

What are the ultimate lessons here? What can people on all sides of this discussion take away? Right now, I don’t know, and for the moment, that is okay with me. I still believe that better things are possible. I refuse to give up that hope.

[Special thanks to meloukhia for ou’s help in putting together links and other material for this post.]

Please read and abide by our comments policy.

Education and Communication: Online Schools in Oregon Under Threat

I recently heard an interesting report on Jefferson Public Radio (JPR), the radio station I listen to, about the Oregon Virtual Academy (OVA), an online public school in Oregon. Oregon legislators are apparently concerned about the regulation of online schools and there’s a proposal to place a two year freeze on making new online schools and expanding enrollment in Senate Bill 767. A lot of the reporting on this issue I’ve encountered has focused on parents being angry about not being allowed to choose which schools to send their children to.

But the JPR report brought up a really interesting point, and one which I would like to see Oregon media discussing more closely. The reporter visited the home of an Oregon student with disabilities to talk to her about her experiences with OVA. She has a learning disability, and in particular has trouble with short term memory. Her mother talked about the various public and private schools that her daughter was placed in, about struggling with “basic” homework which her daughter didn’t remember the next day, and the student talked about her frustrations with conventional education. She became physically ill due to stress from school.

When she started going to OVA and did schoolwork at her own pace, however, the student experienced rapid improvement. She went from lagging behind her peers on assessment tests1 to testing comparably to them, her anxiety was greatly reduced, and her physical symptoms of stress and anxiety resolved.

Clearly, going to school online was a better solution for this student with disabilities. Being able to set her schedule and to take time to go in-depth on some things while moving more quickly on material she was confident about allowed her to improve academically. And there are lots of students who may be in this position. Some students with disabilities don’t learn as well in conventional education environments; why not provide them with an opportunity to learn online? Some students live in really remote areas, and spend a lot of time traveling to get to school 2. Some schools aren’t accessible (even though they should be). There are all kinds of reasons why online education should be an option for students who want it.

And, of course, there’s an argument to be made for enrichment. Oregon is a financially struggling state, and many of its schools cannot afford to offer things like a wide range of language classes, advanced placement classes, and interesting electives for students. For students who want these things, including disabled students, the education system is limiting. Online education, however, can incorporate coursework and teachers from all over the world. Students have more opportunities than they do in physical classrooms, especially if they live in low-income areas where schools are just not getting the funding they need to provide an adequate education, let alone one which offers advanced options or one which serves students with disabilities.

I understand the concerns of Oregon’s legislature. Regulation is important, and it’s important to make sure that students are getting access to educations which meet basic standards. But there’s a kneejerk response against online schooling, homeschooling, and unschooling which I really don’t like, not least because it does a disservice to people with disabilities who cannot learn in conventional school environments. It all gets back to the overall social attitude which privileges able bodies and methods of communication over all, which argues that there’s a “healthy” and “right” way to be and that everyone else just needs to be “fixed” (or hidden), not accommodated.

We need to be addressing the fact that people have different learning and education styles, that school is not one size fits all, and that an important aspect of regulation should include making sure that all students are provided with an opportunity to learn in a way which works for them. To deprive Oregon students of online education seems a great shame to me; surely there has to be a better way to study this and to improve the approach to regulation than freezing online schooling for two years.

  1. I think that assessment tests are extremely flawed, for all kinds of reasons which I’m sure that many of you are familiar with. However, they are used as a common metric, and they were referenced in this report, which is why I’m including the fact that her test scores improved.
  2. When I was in high school, students traveled from places like Cloverdale and Point Arena, two hours away from Mendocino, to get to school. While schools were locally available, they couldn’t attend because the curricula didn’t meet their needs and due to concerns like violence; you don’t want to be gay at Point Arena High, for example.

By 20 February, 2010.    policy  , ,  

A Moment In the Grocery Store

I was in the grocery store recently when I spotted my friend Karen1 with another woman. We met up with each other in the yoghurt section, and I said hello to Karen, but Karen didn’t introduce me to her companion.

Which, normally, I would have thought was rather odd.

But Karen works as an aide to a woman with intellectual disabilities. And I suspect that she’s used to people pretending that the woman with her doesn’t exist, or expressing no interest in her, or behaving rudely, and so got in the habit of not introducing people2. Despite the fact that, as a general rule, when you are with someone and you encounter someone else and everyone does not know each other, introductions are in order.

So, I turned to Karen’s companion and said “hello, I don’t believe we have been introduced.”

Her companion had been staring into the contents of the shopping cart, but she looked up when I spoke, and she smiled.

“Oh,” Karen said. “This is Nina3.”

“Hi Nina,” I said. “It’s a pleasure to meet you. I’m s.e..”

Acknowledging the existence of another human being doesn’t need to be hard.

  1. Not her real name.
  2. Which is a really sad state of affairs, for an aide to be so tired of encountering ableism that she erases the presence of the person she’s working for when she’s in public.
  3. Also not her real name.

Dear Imprudence: Oh No, It’s the Pronunciation Police!

The following appeared in Slate’s “Dear Prudence” advice column chat-room supplement fairly recently:

Chicago: We have a close friend who is prone to embarrassing malapropisms that surpass even the best Norm Crosby bit. These are not innocent and simple mispronunciations—but ugly mangling of words including misuse and lack of understanding of the meaning of some words. I know that many words have multiple pronunciations and meanings, but this is beyond brutal. Some of them are funny, some are faux pas that make you wince and want to help. We used to try to help by repeating the word correctly in conversation after she had mangled it. No success. We have tried the direct approach—like a teacher—but this was rebuffed. We never did any of this in public but in private, away from others. And we picked our spots—only bringing up the worst cases. But she takes offense and continues mispronouncing words and inserting them in conversation where they don’t belong. Recently, my wife used the word adept, and now our friend mispronounces it and uses it like apt. It is like she has her own language. My wife has stopped trying to correct her. Her husband is no help and does the same thing on a smaller scale. I refuse to throw in the towel as I can’t understand why anyone would not want to expand their vocabulary—correctly. I would want to know if I was saying tenor for tenure and FOIL-AGE for any of the many accepted versions of foliage. We are 57 and of sound mind. She does not have a hearing problem.

There are so many problems here, I don’t even know where to begin. This “friend” is SO EMBARRASSING, nor does she take kindly to being corrected by her “well-meaning” pals who think her misuse of language is just terrible! Horrors!

One part that strikes me as uniquely troubling is this: “We are 57 and sound of mind.” Yes, because being 57 is supposed to automatically mean that one becomes not sound-of-mind? Soundness of mind, additionally, is one of those things where the meaning changes depending upon whom you talk to. Combined with the letter-writer’s utterly condescending attitude toward his “friend,” this sounds suspiciously like a trope that has been leveled for ages at PWDs, mostly by the temporarily abled who are so concerned about their welfare: If you’d just take my advice/listen to me/let me HELP you, you would get better. As has been proven time and time again, this is rarely true.

Now let’s look at the columnist’s response:

Emily Yoffe: Your friend probably has some sort of language processing disorder (there was speculation that the George Bush’s malapropisms, “I know you want to put food on your family,” etc., might have come from such a disorder), and all the schoolmarmish corrections in the world won’t “cure” her. It’s good you mention Norm Crosby, because he built an entire career on amusingly mangling language. I don’t know why you consider being with your friend “brutal.” It sounds as if you usually understand what she means, and when you don’t, you can ask for more context. Trying to keep a straight face seems like the biggest problem you face in socializing with her. So just be compassionate and let it go, and when you get in the car, you can laugh at her best neologisms.

Shockingly, I don’t totally hate this advice, despite Yoffe’s ill-fated attempts at snark/humor. She brings up an excellent point: If these “well-meaning” grammar cops think that being around this person (whom they call a friend) is such a trial, then why would they continue to be around this individual? To bolster their own sense of superiority? To show off their class privilege to this “friend” in the most ridiculous way possible? I have some issues with the “just laugh at her when she’s not around” suggestion, which seems almost needlessly rude–laughing at someone’s disability, furthermore, (which they often cannot control) is generally considered impolite for a reason.

But what the hell do I know? I’m just a person with several disabilities; if I’m lucky, perhaps a well-meaning TAB is writing a hand-wringing, oh-so-concerned letter to an advice columnist about me right this very second.

In Which I Confuse a Child Psychologist

Today, a tale from my past which I think illustrates some interesting social attitudes about “intelligence,” social expectations, and children.

When my father and I returned to the United States from Greece, he was informed that I would need to be assessed by a child psychologist before I could be placed in school. Although I had in fact attended school for two years in Greece, California’s education system was deeply suspect of school records in a language they couldn’t read. I later learned that all “immigrants” (by which they meant “people who may or may not speak English but definitely speak some other language”) were subjected to the same evaluation before being placed in an elementary school class, while the “American” (monolingual English speaking) children were not.

At any rate, off we went to the child psychologist’s office, where I was given various coloured blocks to play with and asked to draw things and interviewed. The psychologist asked me questions about my friends and what I liked to do, and I answered truthfully, talking about the time Yannis and I played a prank on the baker and how I liked go to Athens and look at the Parthenon and how we had just gone to Istanbul and seen a folk dancing performance (“but it was boring”) and how on Saturdays we went to the castle and poked around, and in the summers we would go to Xhios and look after Markos’ goats.

My English at that point was perfectly competent. I might have had a little bit of an accent and sometimes I said things in Greek because I didn’t know the English words for them. When I got excited, like while telling a story, I switched mostly to Greek, talking at high volume with excited gestures, like the Greeks do. I probably had equivalent English language skills to American children of the same age, and I had basic reading and writing skills which I could have demonstrated, if asked, mostly in shaky capitals, in both English and Greek.

The child psychologist nodded and noted things down and occasionally asked followup questions, and then I was sent into the waiting room to sit while my father talked to the psychologist. Years later, my father told me about the conversation.

“Well,” the psychologist said, “your daughter seems to have some communication problems, and she doesn’t understand the difference between fantasy and reality.”

“Oh,” said my father, not having observed either of these things. “What do you mean?”

“She makes up stories about people and places, and she uses a lot of nonsense words,” said the psychologist.

“What kind of stories,” my father said.

“Well, she told some story about going to the Parthenon, and then she babbled in nonsense words for a while,” the psychologist said.

“Are you aware that we’ve been living in Greece?”

“Oh, well, no,” the child psychologist said, shuffling his paperwork. “It’s mostly the Mexicans we get in here. [No, really, I am not making this up, this is exactly what he said, my father remembers it vividly.]”

“Well then,” my father said, “I think it’s you who has the communication problem.”

The psychologist looked offended.

“She speaks Greek,” my father said, “and you don’t. And you talked with her for an hour and somehow failed to elicit the fact that she had been living in Greece for several years.

And with that, my father left (and took me with him, of course!).

I ended up being placed in the “slow learners” group with the other “immigrants” (many of whom were also born and raised US citizens, but who just happened to be the wrong colour). We were mostly just left alone in the corner (no, really) and the other kids would chat with each other in Spanish while I looked at books and drew things. Eventually a teacher realized that I wasn’t just looking at the text, but actually reading it, and I was “rescued” and brought up to be with the rest of the class.

I couldn’t help but wonder, at the time, what would happen to all of my “immigrant” friends left to their own devices in the corner.

This is a pretty classic case in which differences in communication styles, in this case languages, are used to make judgments about “intelligence” which have far-reaching effects. It was assumed that no one in the “immigrant” group had any potential or anything to offer the class, so we were just ignored. This sort of thing happens all over the world, every day. Children aren’t “slipping through the cracks” because they communicate differently, they’re thrown into a pit and forgotten about, for the most part, unless someone puts out a little extra effort and attentiveness.

It shouldn’t have to be this way.

Finding Myself in Unexpected Places

On the way home from work the other day, the classical music station in Dallas, WRR 101.1*, played a really good performance of Beethoven’s Bagatelle for Piano in A minor, WoO 59 “Für Elise”. It’s pretty, of course, which is all it needs to be. But every performance (and every work of art and every published document) is an act of communication among the composer, the performer, and each person sensing it. Every person involved in every act of communication brings xer own perspectives and experiences to the social transaction.

I mention this to provide some context for how I reacted to this particular performance of this piece. I’ve it heard scores of times, probably, but I don’t know if I have since I’ve been thinking of myself as a person with a disability. The parts of it that rise to no real musical resolution felt, to me, like the steps of a dancer with a mobility impairment moving across a stage. Xe walks with a gait and doesn’t move with the precision of a physiotypical dancer, and sometimes it feels as though xe might fall (when the music rises in pitch and stops short of finishing the phrase to return to the core, lower-pitched theme), but xe dances anyway. And xe and xer dance are beautiful anyway. It could’ve been someone a lot like me.

It felt pretty damn good, actually.

Has anything artistic — and I include popular culture in art — recently (or memorably but not so recently) made you feel included? Even if it wasn’t necessarily the creator’s intent?

* It’s owned by the city and actually makes a profit. Naturally various Republican mayors and city council members have called it unfair competition (not that there’s another classical music station in the North Texas broadcastmarket) and have tried various times to get it or the transmission station or the broadcast license sold off. Fortunately for us, they’ve been unsuccessful every time.

Conceptualizing disability

Amanda flags a great post by Anne C at Existence is Wonderful, which catalogues “three different ways of looking at autism — in terms of neurological structure, in terms of lived experience, and in terms of outward behavior.”  And Anne does such wonderful things with this delineation. Click through to read the whole post, which addresses attitudes toward autism in particular, but I think Anne hit on something that can be safely generalized outward — her three approaches toward autism can also, in fact, be three approaches toward disability.

[aut_concept_chart.png]AnneC’s chart: Conceptualizing Autism, transcribed below1

Some highlights, all emphasis mine.

My guess is that there are probably multiple underlying structural variations that can produce “autistic phenotypes”, and it will be interesting to see how this pans out, but at any rate, one important aspect of how I presently conceptualize autism is the fact that some structural differences do seem to really exist. And if the difference does indeed go “all the way down” to the brain, as it appears to, then it makes very little sense to (as some seem to) view autism as some kind of disruptive “module” overlaid upon a typical brain.

This is significant both in the cognitive science and the ethics realm, as it indicates (a) that experiments presuming autistic brains to be “broken versions of normal brains” are likely useless, and (b) that the best ways to help autistic people learn and develop functional skills are those which acknowledge an underlying and pervasive difference as opposed to those which presume that autism can be “removed” or “trained out” by simply eliminating surface behaviors.

Yes! Autism, or any disability, is not a case of “a normal brain gone wrong.” It is not a defect or even a modification of a “normal” brain. It is, simply put, variation. We will never overcome society’s confusion and mistreatment toward pwd as long as we think there is any such thing as a “normal” brain (or body) at all. Is any one color or pattern of a cat’s coat a “normal” one? Or are there many varieties, none inherently better or more-important than the others?

At heart of society’s approach toward disability is the assumption that there is a standard template for the human body, and if any one body turns out to be different, it is a deviation from that standard. As such, the solution to any problems resulting from said differences is to attempt to make up for that “deviation,” to attempt to make the “defective” body more like the standard template in whatever way possible.

Put this way, it is obvious that this approach is misguided at best. The solution is not to change the individual body to fit the narrow, faulty expectations, but to adjust those expectations to include the range and diversity of the human experience.


Mind you, none of this is meant to imply that I (or the researchers engaging in the experiments demonstrating visual-spatial trends in autistic persons) believe that autistic people cannot be disabled. Certainly, “uneven” development (which may include significant delays alongside “advanced” skill acquisition in some individuals), communication difficulties, and consequent social, educational, and occupational issues are very real. However, the existence of real disabilities and difficulties need not imply that the “whole person” is somehow diminished by the fact of being autistic, or that one cannot have attributes which exist as both strength and weakness depending upon the context.

This is where Anne comes back around to detail the third approach (outwardly knowable traits). She observes:

The orange column on the right of the diagram summarizes what most people probably think of as “autism” — that is, the externally-visible things that generally get people suspected of being, or identified as being, autistic in the first place.

This is where we see such things as diagnostic checklists, observations about a person’s developmental milestones (and when/if they meet certain expected ones), outward actions, language use, body language, tone of voice, social/educational/occupational success (or lack thereof) in the absence of modifying factors, etc.

What is interesting, and perhaps a bit unnerving, is that this category is at once the one people tend to put the most stock in (in terms of identifying autistics, in terms of determining what educational supports we might need, etc.) and the one most subject to cultural biases, personal biases, misinformation, and the ever-changing social lens through which different kinds of people are generally viewed.

…which, honestly, is a bit scary and unsettling for those of us who are going to be the ones to bear the consequences of any such things.

  1. The chart reads in three columns, transcribed here:

    * Not Outwardly Visible (Indicated by comparison studies of tissues from autistic and non-autistic brains, and some imaging studies)
    * Neurology (Brain Structure/Wiring): Autistic and non-autistic brains are different at the physical level!
    * Some studies suggest: Differences in “minicolumn” cell concentration and size; Local/global processing differences; White/gray matter ratio differences … but there is still no conclusive “autism brain scan.”

    * Not Outwardly Visible (Can be extrapolated from tendencies in performing certain cognitive tasks, and from autistic self-reports and introspection)
    * Cognitive & Perceptual Style: What characterizes the experience of being Autistic
    * Tendency to notice and attend to different stimuli than non-autistic people; Language processing differences (learns and uses language atypically); Sensory processing differences; Different memory and problem-solving strategies

    * Outwardly Visible (Patterns & tendencies in a person’s actions, demeanor, etc.)
    * Observable Traits/Behavior: What usually gets a person identified/diagnosed as Autistic
    * Atypical/”uneven” development (skills acquired in nonstandard order and manner); Diagnostic criteria (i.e. DSM); Behavioral tendencies indicate underlying differences, but do not comprise those differences!

Barriers to justice when rapists attack women with disabilities: Australian report

[This post was originally published on October 3, 2008 at Hoyden About Town.]

*trigger warnings apply to this post: descriptions of abuse and sexual assault against women with disabilities**

“This young woman [“Caroline”] has cerebral palsy, is wheelchair bound, totally dependent on carers for her personal and daily living activities, and non-verbal. Cognitively very aware, she depends on assisted communication to enable her to communicate … Caroline was sexually assaulted by the taxi driver who picked her up from home and drove her to school …

Caroline uses a communication book to communicate, but her communication book did not have the vocabulary she needed to describe what had happened to her. Her communication book did not include words such as “penis” or “rape”, and police would not allow these words to be added after the incident, because as the police explained, in court this would be seen as leading the witness. (Excerpt from an interview with a support worker cited in Federation of Community Legal Centres, 2006, pp. 7–8).”

Suellen Murray and Anastasia Powell of the Australian Centre for the Study of Sexual Assault have just released a new report: “Sexual assault and adults with a disability enabling recognition, disclosure and a just response” [PDF].

This report starts to fill a huge gap in our knowledge of sexual violence in Australia. Although data in North America has shown that women with disabilities (WWD) are far more likely to experience sexual violence than those without, up until now there has been little or no systematic research into what is happening with WWD in Australia:

Despite being the major national data collection regarding the status and experiences of adults with a disability, the ABS Survey of Disability, Ageing and Carers, does not invite participants to report on their experiences of violence or abuse.

Similarly, the ABS (2006) Personal Safety Survey report, which specifically investigates experiences of violence, does not identify the disability status of participants, and the International Violence Against Women Survey (IVAWS) specifically excluded women with an illness or disability from the sample for the survey (Mouzos & Makkai, 2004).

Therefore, despite evidence that approximately 20% of Australian women, and 6% of men, will experience sexual violence in their lifetime (ABS, 2006), there is no standard national data collection that includes the experiences of sexual violence amongst adults with a disability, or more specifically, the experiences of women with a disability.

There is one smallish South Australian study showing that adults with intellectual disabilities are over ten times more likely to have been sexually assaulted.

Read more: Barriers to justice when rapists attack women with disabilities: Australian report

Next page →
← Previous page