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.

Similarly:

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!

2 thoughts on “Conceptualizing disability

  1. A whole heap of yes to this and Anne C’s post.

    One of my diagnoses is nonverbal learning disability (NLD), which comes from neuropsychiatry. One of the awesome things about neuropsychiatry is the tendency to look at people in patterns: strengths, weaknesses, how they go about solving problems, etc. Which means that NLD has been framed as a collection of deficits and assets for 30 years. By contrast, studies of assets in autism are much more recent. Which is part of why you see resistance to the idea that there is anything good about autism–because for so long scientists have not framed autism as having assets. NLD researchers and parents of NLD kids do not have this “But you’re trivializing a real disability!” reaction when we talk about assets in NLD. NLD has always been framed that way.

    Still, all is not awesomesauce in the NLD literature, especially Byron Rourke’s stuff from the 80s and 90s. Because while assets are an integral part of the NLD model, Rourke tends to conceive of them as being much less important than the deficits. His tone is often a mix of, “Oh, they can spell–isn’t that cute?” and “Well, yes, they have good vocabularies and can decode text very well, but those are, like, the least important aspects of language!” He calls our speech “cocktail-party speech”: not, as far as I can figure out, because we have the sort of language that people use at cocktail parties. (In a discussion about this term, several of us with NLD said that we had difficulty with the social chitchat we associated with cocktail parties). The term seems to be a cutesy way of saying: “Like people at cocktail parties, people with NLD talk about trivial, unimportant, boring things that have no substance.”

    What also happens is that, when NLD literature tries to explain us to non-disabled people, it tends to frame our assets as a form of deception on our part. Sue Thompson has written repeatedly that we give off an “illusion of competency.” Because, you know, if a teacher cannot recognize that the child who can read very well, speak eloquently, can’t find the bathroom, tie hir shoes or make friends has a disability, it has nothing to do with the teacher being wrong or anything.
    .-= Tera´s last blog ..Rosemary =-.

  2. Oooh, yes yes and very yes. I love that chart, because it sums it up so perfectly.

    One of the unfortunate things about autism is that a lot of autistic people wind up working very, very hard to eliminate column 3, as that’s the kind of thing that will get you discriminated against and can land you in heaps of trouble. (A huge portion of my spoons every day goes to this: trying to keep my body language standard, trying to read other people’s body language, trying to figure out what I am supposed to do/say in a given situation…) However, if you no longer evidence enough of the behaviours from column 3 you are likely to be written off as faking it or not really autistic. *Also*, the things from column 3 are what are considered in a diagnosis. I have thinky thoughts on how incredibly tricky diagnosing autistics in adulthood can be, because a lot of adult autistics are going to be very, very invested in trying to hide all of the things the person assessing them is going to be looking for.
    .-= Kaz´s last blog ..Why, Feministing. Why. =-.

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