Showing posts with label functioning labels. Show all posts
Showing posts with label functioning labels. Show all posts

Saturday, July 27, 2013

All Developmental Disability Is Autism?

Amanda Forest Vivian pointed out something interesting in this post (about a singer using the words "autistic" and "retarded" pejoratively, and then apologizing for it): People seem to be confusing autism, one particular developmental disability, with developmental disability in general.

Here is what she says:
There was a time when all developmental disability was assumed to be intellectual disability and people were confused by the word autism. Now the opposite seems to have happened--for example, when people find out I work with someone who is nonspeaking, they immediately assume she has autism, instead of realizing that there are many disabilities that could cause someone to be nonspeaking. In general, people will often describe anyone with a developmental disability as being "autistic"--even though intellectual disability is the most common developmental disability!
I thought of two reasons why this might be happening, one simple and one not so simple. The simple explanation is all the Autism Awareness campaigns --- people are hyper-aware of autism (aware that it exists, anyway; maybe not always of what it is), and have forgotten that other developmental disabilities exist. (Or maybe it's not so much that they've forgotten, but that the concept "autism" is always lurking near the forefront of their minds, ready to be applied to any person whom they might previously have categorized as retarded, crazy, spastic, etc.)

Also, with how much talk there is of an Autism Epidemic, people might be expecting to see autistic people a lot more frequently than they used to. In some ways, this is good --- people know that we exist, and that we live right alongside them and do many of the same things that they do --- and in some ways it hasn't gone far enough --- people don't seem anywhere near as aware of the existence of autistic adults as they are of autistic children --- but maybe it has also made it so that people expect to see more autistic people than there are, and maybe they're filling up the gap between how many autistic people they expect to see and how many autistic people they do see by lumping other developmentally disabled people into that category. 

It's annoying because autism is not the same as other developmental disabilities, and autism awareness at the expense of other disabilities might make it harder for people with other disabilities to get people to understand them, or make the accommodations they need as opposed to the accommodations autistic people are understood to need.

The second, harder-to-explain thing that occurred to me was that maybe the substitution of autism for developmental disability in general might reflect a value judgment*.

Non-disabled people are afraid of disability. They're afraid of disability because they know it could happen to them (or to their kid, if it's a developmental disability), and because this is an ableist culture that tells people that a life with disability is akin to death**. (Though, mercifully, I think there might be starting to be a little pushback on that point making it into mainstream consciousness --- disability activists have always said that our lives are worth living, but now a few scholars and journalists, here and there, seem to be listening.)

I think Western culture also fetishizes intelligence***, and sees it as one of the few things that can make up for the monstrous faux pas of having a disability in the first place.

You can see a marked difference in how allistic people talk about the autistic people they see as "low-functioning" --- i.e., having intellectual disability**** --- versus those they see as "high-functioning." The former they talk about as if they were not people at all, and in frankly eugenic terms about how much better off everyone would be if they didn't exist; they talk about how expensive such people are, and what a terrible burden they are on their families, the state, or both. If they mention quality of life at all, it's only to say something like, "Nobody could want a life like that..."

Attitudes toward the latter group are somewhat more complicated. Especially with the stereotypical "Aspie," whose impairments are minimal and only affect social interactions and are offset by exceptional intelligence and aptitude for math, science, or computers. They are also thought to be (at least, in their pop-culture incarnation) hyper-rational, like Vulcans, their thought processes uncluttered by emotion and petty interpersonal concerns. (This is an ambivalent form of idealization --- I usually write about it as a negative stereotype, since it also implies that we have no feelings and are amoral, and also that we are something not quite human. I have come to mistrust, intensely, any stereotype that carries that implication, even if it is ostensibly a flattering one, because "you're not human" too easily segues into "you don't have the same rights and protections a human would have." And yet I think there is an element of idealization in it, too.)

So there are competing ideas about these stereotypical autistic geniuses; on the one hand, people tend to mythologize them (or, sometimes, the people who come closest to fitting this stereotype tend to mythologize themselves) as the Prometheuses behind every great technological innovation in human history (c.f. Temple Grandin, "It was probably an Aspie who chipped away at rocks while the other people socialized around the campfire. Without autism traits we might still be living in caves.")

On the other hand, there is definitely a sizeable contingent that would like that category of autistic person to vanish from the Earth as well. I mentioned in an earlier post the growing stereotype of the Aspie psycho-killer (qu'est que c'est), a person whose complete lack of empathy enables them calmly to plan and carry out mass shootings. 

Anyway, my point was that intelligence mitigates the ableist impulse to dehumanize autistic people. Even in autistic people themselves --- how often do you hear, "I'm not disabled; I'm smart!" or some variant thereof? --- you see this come out as a self-defense tactic. I know I used it that way. For me, the problem was that my worldview was too individualistic to see that my individual merits didn't matter; that all people, no matter how smart or stupid, how virtuous or venal, deserve equal rights. I was trying to say, "I'm a person; I deserve to be treated like a person," but because of my internalized ableism it came out as, "But I'm not disabled! You should be treating me like a real person, not a disabled person!"

I think it's entirely possible that this set of biases --- disability is bad, intelligence is good, some autistic people possess intelligence --- might play a small role in explaining why a person who sees a developmentally disabled person jumps to the conclusion that the person is autistic. 

I've also noticed a strain of wishful thinking that says autism isn't really a lifelong condition --- it can be treated, or cured, by (in descending order of battiness) growing up, intensive behavioral training, changing one's diet, taking vitamins and supplements by the fistful, chelation, etc. That might enter into it, too. 

*Obviously I don't think any of this is happening at a conscious level, or with any ill intent. I think that if this is a real thing, and not just something I made up, it's operating at the level of an implicit bias, that you don't even know you have but that can subtly alter what you see to fit what you expect to see.

**Amanda Baggs has written some powerful, if horrifying, things about her own and her mother's experiences with doctors who believe this. 

***I know this is a very controversial statement, given that I am writing this in an American context, and anti-intellectualism is also a thing in American culture! I may write a post about that, too --- how those two contradictory attitudes coexist.

****I'm not sure that that's ALL "low-functioning" and "high-functioning" mean, but the presence or absence of intellectual disability, indicated by one's IQ score, is used often enough in the literature that I feel confident using it myself. And when I use these phrases, I use them to represent what allistic people think autistic people are like, not what I think accurately describes autistic people. Because I think that, while autistic people do vary in how impaired they are and how much support they need, I don't think degrees of impairment map neatly onto a binary of IQ less than 70 or IQ greater than 70. I also think that the same person can be "high functioning" --- need minimal support --- or "low functioning" --- need intensive supports --- in different contexts. Even Temple Grandin, the high-functioning autistic's high-functioning autistic, was what most people would call "low functioning" as a child.

Friday, December 17, 2010

More Disagreeing by Diagnosing: the Aspie-in-Chief

EXECUTIVE SUMMARY: Partial transcript of a podcast by two progressive political bloggers that criticizes President Obama's leadership style, which the podcast hosts believe is weak. The podcast, titled "Hey Obama, Get Your Head Out of Your Asperger's!" spends a lot of time drawing a picture of Barack Obama as a "high-functioning Asperger's" autistic, who is fixated on governing according to his own ideas of what the Presidency is supposed to be, even at the expense of governing well, or of doing any of the things the people who voted for him want him to do. Besides producing this transcript, I also critique the Obama-as-Aspie metaphor, and quote another autistic blogger's (Leah Jane) criticism that I particularly endorse.
___________________________________________

Leah Jane at The Quixotic Autistic linked to this Professional Left podcast from a couple of weeks ago, titled "Hey Obama, Get Your Head Out of Your Asperger's!"

The podcast couches some actually very good criticism of Barack Obama's approach to being President in
some really offensive stereotyping of autistic people (similar to the instances of Disagreeing by Diagnosing I've chronicled earlier on this blog). Leah Jane transcribed and paraphrased a little bit of the relevant part of the podcast (which is very long --- almost the whole first half of the forty-minute recording), but invited other people to transcribe more of it, so I figured I'd do that.

The participants in this exchange are progressive bloggers
Driftglass and Blue Gal:
Driftglass: ... I'm very disappointed in my president right now.

Blue Gal: Yep. I actually woke up this morning and had a revelation about Barack Obama that I want to share with you.

Driftglass: Ooh! Pray tell, pray tell.

Blue Gal: I haven't even put this in the podcast notes, because I want it to be fresh.

Driftglass: Well, hold on, let me "man up" so I can handle it!

Blue Gal: (Laughs)

Driftglass: Let me put on my "man pants," as the new parlance for bracing myself ---I'm girding my loins.

Blue Gal: Girding your loins. There ya go.

Driftglass: Ready, gird! Okay, go.

Blue Gal: You and I both know --- and I actually did Photoshops this week of Obama as Spock --- and you and I both know, and lots of people have said that basically, Obama is sort of on that high-functioning Asperger's end of the spectrum, of not being emotional, of being very rational about things rather than getting mad, and that's very frustrating to a lot of us.

Driftglass: Yes.

Blue Gal: But along with that --- and also, full disclosure: Driftglass and I are very familiar with what it feels like to be on the Asperger's end of the spectrum; I think I can speak for both of us in that regard, may I?

Driftglass: That's a fair statement.

Blue Gal: We've talked about that before.

Driftglass: Yes, that's a reasonable ---

Blue Gal: Obsessive interests, you know, being able to ignore everything else to the point of a fault, and so forth. But one of the things that people like us, at that end of the spectrum, often do, is focus on one little detail --- again, to the fault of forgetting the big picture.

Driftglass: Yes.

Blue Gal: --- and I really think that the Constitutional scholar Barack Obama has this little seed in his mind that the Presidency is supposed to be weak, Constitutionally speaking, in relation to the Congress, in terms of starting legislation, and so forth. He's decided that he's going to return, he's going to change the way Washington works, and what he means by that is he's going to go back to a time when the Presidency and the Congress and the courts were part of this balancing act --- you know, the three branches ---

Driftglass: (cuts in) Pre-Imperial.

Blue Gal: Pre-Imperial presidency. So I'm thinking this morning in my kitchen about, "Well, when was it that we sort of got this imperial presidency?" and I realized, "Oh, my God, FDR!"

Driftglass: Yeah?

Blue Gal: And, so, doing this is antithetical to the New Deal! You know? It really is!
Driftglass: It is. It is.

Blue Gal: And that's why we're all having such a collective freakout, like "Revenge of the Nerds," when the nerd gets elected to the presidency of the student council, and, instead of sitting down and taking over and representing the rest of us nerds, and doing what we want him to do, he sits down and takes out the bylaws, and says (speaks in nasal voice) "Well, ya know, we really have to go by the bylaws and the bylaws say that everyone gets a vote and we all have to work together on a consensus."

Driftglass: Uh-huh.

Blue Gal: And we sit there and we're like, "But wait! We elected you President because we don't want the Alpha Betas to have a voice in this! They're jock assholes! They're not gonna come up with anything that's gonna even resemble a reasonable answer to any of the problems we have." (nasal voice) "No, but the bylaws say we have to do it this way." (resumes her normal voice) And the collective freakout from the progressive base, is, "Oh my God! He's going by the bylaws! Stop it! Stop it! Stop him now! We want you to be an imperial President. We want you to be strong."

Driftglass: He's an originalist. He's a Constitutional originalist; the first branch of government is the Congress.

Blue Gal: Yeah! And they're the ones that originate legislation.

Driftglass: Yeah, absolutely true.

Blue Gal: And, as someone who came fresh out of the Senate --- you know, was really in the Senate for a very short time --- and being the Constitutional scholar that he is --- but the other thing about this "Aspie" thing, this Asperger's thing, is, two things: One is, I think Barack Obama really has faith in America, and thinks
that America can survive anything. We survived Reagan. But I think he really has fundamental faith in America to survive anything, and so it's perfectly okay for him to conduct this experiment, and I really think he's conducting an experiment now, in his head. Let's go ahead and really do this Constitutional thing of letting the Congress have more power.

Driftglass: Yeah.

Blue Gal: And I think he realizes that, the people he's dealing with, they're Republicans, you know?

Driftglass: Yes. Well, there's the fly in the ointment, isn't it?

Blue Gal: Yeah! The fly in the ointment is, they want to destroy him. And he doesn't care because he's gonna conduct this little experiment in Constitutional originalism --- it's almost ironic in terms of the Tea Party always talking about defending the original Constitution, which to them means "we only have white men for President" ---

Driftglass: The Second Amendment, the Tenth Amendment, and nothing else.

Blue Gal: --- but the real Constitutional originalist is Barack Obama.

Driftglass: That's a very interesting revelation.

Blue Gal: And it's intellectualizing it like that that distracts me from wanting to (bleep) Congressional offices, damn it!

Driftglass: Okay, you'll have to, uh ---

Blue Gal: I think I'll have to edit that out.

(Both laugh).

Blue Gal: It's a joke! It's a joke. I'm kidding, I'm kidding.

Driftglass: Send them a very firm letter.

Blue Gal: I'm going to send a very firm letter, too!

Driftglass: Well, I can understand that point of view. I can respect that point of view. You raise a very interesting point, that he is conducting his presidency as a mediator among the branches of government, and as a modest, confirm-or-deny kind of person, but [one] who doesn't originate. And that is what the Constitution generally says a President should be.

Blue Gal: We're so not used to this, because, when I teach middle-school U.S. history, it's all about who was President. You start there, with U.S. history.

Driftglass: Of course.

Blue Gal: "Okay, when FDR was President, this, this, this and this happened." You don't start with, "The great Congresspeople of 1945, how brave they were!" You know? You don't go there! That's not how we think of history.

Driftglass: So he's essentially gone to the House basement and pulled out this 200-year-old machine, and said, "I'm going to oil it up and get it running again and make it run the way it was originally intended to run." That's a very interesting theory, and I think that we could spend probably the rest of the podcast talking about it.

Blue Gal: I think so. Yeah.

Driftglass: But if I'm that guy, then Step One is, I stop torturing people.

Blue Gal: Yeah. Yeah.

Driftglass: Step Two, I close down secret prisons. If you really ---

Blue Gal: And that's it. I think that's where he fails his own experiment.

Driftglass: He does.

Blue Gal: Because, there are areas --- particularly during the Bush administration --- where presidential power just exploded.

Driftglass: And he wants to hang onto that.

Blue Gal: He wants to hang onto that! You can't have it both ways.
I do think there might be something to Blue Gal's notion that Barack Obama, the Constitutional scholar, might be deliberately not being as strong a leader as he could be because he believes the Presidency *should* be weak. Of course, there is a conflict there with his keeping in force all the totalitarian measures his predecessor adopted after 9/11, using a vague Terrorist Threat to justify all manner of surveillance-state excesses --- and Driftglass and Blue Gal catch that inconsistency, and acknowledge it. They make some other criticisms of Obama's leadership style that I think carry a lot of weight, like his persistence in believing that the extremists who've largely taken over control of the Republican Party (in what I think of as a two-stage process that began with the anti-Clinton Republican Revolution of 1994, which gave us Newt Gingrich, and has culminated with the current anti-Obama backlash) will move even one nanometer to the left in order to compromise with him --- even if he moves a mile to the right first, as a gesture of good faith. Driftglass also makes a good point that Obama is not only President, he is also leader of the Democratic Party, and he is abandoning this second responsibility. I also appreciated their discussion of the long historical roots* of the "imperial Presidency" that they suspect Obama of wanting (if not quite wholeheartedly) to abdicate.

But this "oh, the President is an Aspie, that's why he's so 1) emotionless, 2) naive and 3) stubbornly committed to principle at the expense of realpolitik" thing, that's the part I didn't find particularly helpful or illuminating.

I thought Leah Jane put her finger on the biggest thing that's wrong with this use of autism-as-metaphor:

[W]hen the American people were at an all time euphoria about Obama, he was compared to Spock, and Superman, and other idols of nerd culture, but the "A" word never came up. Now, progressives are finding a few walloping things wrong with his decisionmaking and snubbing of progressives, and now it's so convenient to label him with autism or some other "disorder" or invisible disability. Disability need not apply to people when they're doing what you think is right, but the moment you find fault with them, disabilities begin to be thrown about, and always the negative stereotypical traits are thrown in too. Never would it be suggested (at least while he is alive, see Einstein and Newton) that Obama has Asperger Syndrome for an exceptional trait which makes him a fine leader. Always focus on what makes them different, not good. Same for Narcissistic Personality, or Psychopathic Personality, Obsessive Compulsive Disorder, or now, Asperger Syndrome. Yay. Or just happily labeling anyone who disagrees with you as part of the Loonie Left, or a Wingnut, or a Right Wing Nutjob, having "Nazi Tourettes," having some type of ADD or ADHD, or a Crazy [insert noun], or Republitard.

How delightful to know that the mentally and intellectually disabled are so disposable.
I remember this, too: during the campaign and shortly after he became President, people would use words like "cerebral," "rational" (or "hyper-rational," if you're fond of superlatives), "intellectual," "professorial," or talk about his desire to transcend partisanship, or dirty politics, or whatever; the image was of a guy who practically embodied Reason and Idealism and Moderation in All Things. And we did not use a psychiatric diagnosis to convey this image; we used mere adjectives. Now that some commentators see these same traits as flaws --- as impediments to his being an effective President --- they describe them in psychiatric terms. What were character traits or habits are now symptoms.

Using metaphors like that --- comparing some trait, or philosophical stance, or policy position, in a politician to a DSM diagnosis --- does two things. First, it marginalizes and delegitimizes the person you're talking about, since whatever they say can (and usually is) just be used as further evidence of their incapacity; and second, it feeds the stigma against people with that particular diagnosis. There's already a stereotype that autistic people are never leaders, never politicians, because of our total lack of social skills; if "autistic" or "Aspie" become common insults for a leader who is seen to be ineffective, the stereotype becomes stronger (and also, more specific to political leadership). Young autistic people trying to find something they're good at and want to do with their lives might assume they can't go into politics (even if they might want to, or have an aptitude for it**), or people in a position to hire, say, campaign workers might choose not to hire anyone who says they're autistic, or who looks autistic, because they've gotten the idea that autistic people don't belong in politics.

*I wonder if, based on some things I've read at Arthur Silber's blog (start with this nine-part series on "Dominion Over the World" and follow links to his other writings on the history of American imperialism, if you've got lots of time and an intense interest in this matter), if this overpowered executive branch might not be even older than they seem to think it is --- if maybe it didn't start with Woodrow Wilson (or earlier --- you wouldn't call Teddy Roosevelt a passive, retiring, conciliatory sort of leader, would you?) rather than Franklin D. Roosevelt. Wilson was also a very active, aggressive President who embroiled the nation in bloody, imperialistic wars that it had no need to fight (in Mexico, Haiti, Cuba, Nicaragua, Panama, the Dominican Republic, and Russia, according to Wikipedia; he also ultimately made the choice to involve the U.S. in World War I). But Wilson in particular seems to have done a lot of the thing that I had previously thought started with the Gulf of Tonkin resolution that kicked off U.S. involvement in the Vietnam War: using executive power to declare war without ever formally declaring war, which the Constitution allows only Congress to do.

**Which some of us do!

Tuesday, November 16, 2010

"What Is High Functioning?" Tumblr

Someone (I think it was Amanda Forest Vivian, but I'm not sure) started a Tumblr for the purpose of providing highly specific answers to that question --- what is "high functioning"?

People are encouraged to submit anecdotes about people with developmental disabilities being labeled "high functioning," and what specific thing they think led the person to label them that way.

Some specific examples of things that get people sorted into the "high-functioning" category:

(There are also some less-concrete examples of "high-functioning" stuff like being able to speak fluently, carry on a conversation, not having a "routine" and being "independent.")

Anyone can submit a post; they just have to click the "Submit" link in the sidebar and type in the text of their post, a title, and their name and email address.

I love the idea around this Tumblr blog --- to have one place where people can share all the different things "high-functioning" has been used to mean --- and would submit an anecdote or two of my own if my autobiographical memory weren't only slightly better than Wolverine's. (I know that I've been called "high-functioning" fairly often --- at least once in the context of, "isn't she too high-functioning to be here (at a camp for autistic children)?" --- but cannot remember the details of any of these instances. So I don't think there's anything I could contribute that would be of value to this project, which is too bad).