Just the Experience, Please
My mom and dad made a point of telling me how much they liked the CNN special on autism, Finding Amanda that aired last Monday (and was supposed to be re-aired Friday night, but got pre-empted by live programming on Larry King). Charlie calls my parents by the Cantonese words for “grandfather” and “grandmother,” “Gong Gong” and “Po Po”; while they live in California, they are his main babysitters. Aside from Charlie’s home speech therapist who we have known since she was in college, my parents are the only people who can take care of Charlie for long periods of time, and overnight, if need be.
That does mean that they have been with Charlie through every possible sort of moment, including some really tough ones—-as on Tuesday when he was sitting in his rocker chair smiling one moment and then the on the carpet, head down, the next. I’ve given my parents mini-lessons in “ABA 101″ and “what to do when something goes awry in a store,” made picture schedules, sat down and planned long lists of possible activities, picked up my cell phone while talking to a student when my mother’s number cmae on. My mom and dad understand the day-in and day-out of taking care of Charlie and he is generally in a happy way when they visit.
What my mom and dad reported that they liked most about CNN special on autism, Finding Amanda was that it was was simply about “the experience.” “It didn’t go into mercury and all that,” said my dad. “It was just about what it’s like to be autistic,” my mom added. They both noted that they hoped that other of my family members might watch the Finding Amanda and I thought about how this view of autistic children growing up (like DJ Savarese) and of autistic adults truly broadcasts a message of hope. Of hope for the future, hope for what Charlie might someday be able to do, and hope that we might all understand a little more about how to be with autistic persons.
That does not mean “doing nothing”: My parents are in their late 60s and keep Charlie going places (in the car and on the train to New York), taking long walks, showing him how to prepare vegetables to cook (”he didn’t see the point in washing off the mushrooms,” my dad noted and added that Charlie, like him, is fond of green onions, “cooked and raw.”).
Who knows who’ll be looking for a good sous-chef one day?
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15 opinions for Just the Experience, Please
Marla
Nov 24, 2007 at 11:09 am
Your parents make a very good point. I always get frustrated when news show focus on the debates and not the “experiences” since so few people truly understand what autism is and how it affects family and the person living with it. I especially get frustrated that the wide differences in how autism affects people is not explained well.
Kristina Chew, PhD
Nov 24, 2007 at 12:37 pm
I think what they really appreciated was, too, seeing other, older autistic people, and doing so much.
Amanda
Nov 24, 2007 at 12:38 pm
Meanwhile, I and many other autistic people get frustrated that when it comes to our lives, “just the experience” is the only input we’re allowed to give, or presumed to be able to understand.
Meanwhile, parents, siblings, and professionals are all allowed to have broad political opinions regarding autism and disability. However, the moment an autistic person expresses a broader opinion on the topic, there will be a bunch of people rushing in to claim that we are only qualified to discuss our own personal experiences, and that any opinions we have, no matter how well-considered or what they are based on, must be based only on our own experiences and on nothing else.
And of course that happens, but we’re no more likely to be biased in that manner than most parents, siblings, or professionals are.
So when you said “Just the experience, please” I was actually preparing for a post all about how autistic people are expected to stick to individual experiences described in as apolitical terms as humanly possible, while others are welcome to define us as much as they want. Or possibly (although in retrospect the way they showed it you wouldn’t know) how they managed to turn a conversation about political organizing between DJ and me (he has plans for a summit for autistic people to do exactly that) into a matter of purely disability-inspiration stuff.
I obviously don’t see anything wrong with talking about our experiences, or else I wouldn’t do it, but our experiences occur in a context, and that context is what we’re often assumed not to be capable of forming accurate opinions about (or actively discouraged from speaking about).
Autism Network International: The Development of a Community and Its Culture has more information on this phenomenon, and its parallels with other historical situations.
Kristina Chew, PhD
Nov 24, 2007 at 12:53 pm
Thanks, Amanda. I’m not surprised yours and DJ’s conversation got repackaged as “disability-inspiration stuff”; I think that’s about as far as most people want to take it. In the same way, I’ve had conversations where it’s all right to “celebrate Chinese culture” but when one starts asking questions about racism, bringing up the Chinese Exclusion Act, and Vincent Chin, the conversation goes silent.
Ralph Savarese
Nov 24, 2007 at 2:33 pm
I agree with Amanda (though I understand and appreciate Kristina’s parents’ point). DJ viewed his clip with Amanda and said, “No, I really mean it” (the summit). He desperately wants Auties to be able to define themselves, as he put it on the show. And that means Auties weighing in on the science, the politics, the experience of autism–you name it. What I told DJ is what I genuinely believe: the piece was much more progressive than anything I’ve seen on mainstream TV. Chris, the producer, and Sanjay, the anchor, SHOULD be applauded for what they’re trying to do; at the same time they should be encouraged to think still more about how they represent autism. The show is a start. I feel a groundswell, and that summit just might happen: hundreds and hundreds of Auties descending on Washington in DJ’s vision. Three cheers for Amanda and DJ and the courage it takes to risk misrepresentation in order to fight for real change. Three cheers for CNN as well; they’ve started down the right road and captured something, however incompletely, that has always been there. –Ralph Savarese
Kassiane
Nov 24, 2007 at 4:08 pm
CNN wasn’t gutsy enough to admit they were stalking people at the conference *wicked grin*. Nor, I imagine, will they be gutsy enough to admit that they were seeking out ONLY people who didn’t use speech, in order to keep the “functioning level” divide intact.
We’re past the time for inspiration even if that’s what makes people feel good. It’s also time for the general public to get over the “auties are to be seen and not heard except in a universal translator capacity, and then we reserve the right to dismiss anything they say at any time as ‘too high functioning’”. That doesn’t help today’s autistic adults, or tomorrow’s autistic adults-today’s autistic children.
Kassiane, sick of people making assumptions based on ONE ability & dismissing everything I say based on said ability
Amanda
Nov 24, 2007 at 4:25 pm
I actually urged them several times to also interview autistic people who spoke.
They said they “just somehow ended up gravitating” (their words) towards people who didn’t use speech. But they seemed so interested in lack of speech that they kept getting confused about some things (like that, for instance, during certain periods of my life during which they describe me at least within an inclusive “they” as non-speaking, I could speak).
I would love if they portrayed a mixed group of people, speech-wise. Maybe they will, by the time they get to the end of it, but I have no idea since I don’t know who they interviewed (I kept urging them to interview Phil Schwarz).
If I don’t keep replying it’s because I’m supposed to stay off my butt because of a minor pressure sore (not enough to worry about, but enough to require various tactics to prevent it becoming something to worry about) and right now typing from a kneeling position is getting uncomfortable.
Kassiane
Nov 24, 2007 at 6:58 pm
I didn’t see them talk to anyone who primarily uses speech, except when they argued with me that they had a right to the room I was scheduled to be in at that time because *THEY* were CNN, who the hell was I? “Um, the person on the schedule for this room?” and that wasn’t on camera, they were talking to a young man who had just learned FC at that point. And that was very good and wonderful except that they were in a room where a talk was scheduled when it was scheduled, and one person even informed me I was too high functioning for their throwing off my schedule to bother me.
It was at about that point that I apologized to the kid they were talking to for interrupting them and said “OUT”. I guess that makes me the token bad autie, huh? Speech and outspoken about my routine…
Kristina Chew, PhD
Nov 24, 2007 at 7:28 pm
Too bad they didn’t put that exchange on…CNN isn’t far from Fordham Lincoln Center….I’d say, it’s less of a challenge to make a simple equation like “no speech => lfa” and “can talk ==> hfa.” And then they’d have to address complications like “what is the autism spectrum.” If I may, and this may come across in a way I don’t intend it, do you think that they were looking for autistic people who would “look” the way they thought viewers expected? (This question rises from the times when Charlie was younger and people would express surprise that he was autistic because of his appearance.)
Ralph Savarese
Nov 25, 2007 at 7:23 am
Kassaine, I take your point. As I said, the thing is far from perfect. But I don’t see anything wrong with focusing, for this one special, on the group labeled “low-functioning.” This group has shouldered a particularly oppressive burden, shunted to the sidelines of society: “creatures for whom very little future lies in store,” to quote the good doctor Oliver Sacks (heavy irony). Historically, there HAS been a correlation between a lack of speech and a lack of intelligence–with devastating consequences. CNN’s intent is PRECISELY to undermine the label “low-functioning. DJ’s idea of a summit is to bring together the entire spectrum. Let’s continue to try to educate the public and get CNN to do another special. This one with Amanda WILL have positive effects, even if it comes wrapped in conventional media packaging. –Ralph Savarese
Kassiane
Nov 25, 2007 at 2:06 pm
CNN’s intent was to be divisive as ever. The idea that speech =/= successful in all areas (or any area but, well, speaking and putting my foot on my head in my case) is beyond them. We can’t go challenging people’s ideas, noooo.
You’d be cynical too if you’d nearly had to bodily drag them out of a room to give a presentation (ironically) on autistic self advocacy, which was clearly written up on a schedule that everyone received at the beginning of the conference. Dunno if you saw me there, I am the rather (physically) small pain in the butt with the orange sweat shirt, slippers, 5 inch scar on my ankle, and limp. And I almost had to shove them out so I could do my speech.
DJ will do great things. I have no doubt of it. CNN acted like they were at the circus, and doing the “freak show” a favor by gawking.
Amanda
Nov 25, 2007 at 2:15 pm
The problem I have with a special like this is that it does focus on a false dichotomy. I exemplify why the dichotomy is false, having been technically “verbal” at some points in my life and not others (and a lot of things in between that nobody ever touches on for some reason, possibly because they’re too complex for a soundbite).
Personally as I’ve said before, I don’t tend to identify with people along the lines of speech status. I tend to identify more along the lines of:
1. A few particular life experiences (especially people who, like me, have experienced the utter extremes of mainstreaming-as-”gifted” and segregating-as-”defective”, and there’s more of us than people would imagine).
2. Difficulties in receptive language whether or not the person has apparent expressive speech or writing or whatever. (There are a lot of people who could always understand everything but who could never talk, and that wasn’t how my experience worked at all.)
3. Certain broad cognitive and perceptual differences, and having an innate “language” that is different from standard language, whether the person can’t use standard language at all or uses it with a high and accurate vocabulary.
But those are my own personal ones. I hate to think that what I have to say about being autistic would be less relevant if I could talk. Or about having been described as “low functioning” (a term I don’t buy into) — when I found a paper that described me as “low functioning” specifically, it referred to ages where I could speak with superficial fluency at times (and varying degrees of accuracy of communication, which is a totally separate thing). I still don’t know what criteria they used to call me that because it was not explained on the sheet of paper. There are many experiences common to people who grew up completely non-speaking that I simply have not had. And there are many that (by virtue of my other difficulties with expressive and receptive language) I have had. But I also had a lot of the advantages that happened to go with having speech, some of which led to other problems that people without speech usually don’t encounter (like being advanced further every time I showed signs of incomprehension until I experienced a massive burnout).
And then there are differences that are assumed but that aren’t there, such as that people without speech don’t understand things, and that people with speech do understand them, and that people without speech can’t do certain things, and that people with speech can do them.
And then there’s people like me who were pathologized for the bizarre content of our speech, which happens more often than people realize, especially in those of us with the combination of comprehension problems, stress, abuse, cultural variations, pressure, and fantasy-as-escapism that I experienced.
And then there’s people like Kassi who are, by virtue of their speech, expected to do things that people without speech are not expected to do, and when they fail at those things, it must be because they’re either manipulative or crazy. And this leads to horrible abuse and neglect. I fear for Kassi’s life a lot of the time, as well as the lives of many other people I know, and I don’t think that’s trivial even if it’s not identical to the oppression that people experience when they are pathologized in different ways due to lack of speech. (But the similarities would still surprise you if you weren’t aware of them.)
It’s just so complicated that I think if someone is going to pick out a certain group of people and focus on them they should be up-front about why, without trivializing what happens to people who aren’t in that group of people.
None of this means that the broadcast is going to be useless, it’s just another of many possible flaws in it. There’s always more complexity than can be shown on TV. I’m thinking of starting an online project (have already started messing around with it in fact) that deals with the sheer diversity of our experiences without making simplistic judgments and categorizations (and the fact that both differences and commonalities are found where we least expect them sometimes if we go by the stereotypes), and DJ and Kassi are both people I’ve got written down on a list somewhere of people I’m intending to eventually ask to help with it whenever my health gets back in gear.
(I’d gotten the idea just before AutCom, then reworked it when I realized the original one would be completely unfeasible for me, then talked a little about a different angle on it at AutCom for a presentation there in the future, and am still hashing out the details.)
Ralph Savarese
Nov 25, 2007 at 2:47 pm
That’s a great idea, Amanda. There is endless diversity in any group. Borges wrote a story about a man who simply could not categorize because he saw, for example, every leaf in its irreducible particularity. The word “leaf” meant nothing to him. It is very important to emphasize autistic diversity, but that can be done, I want to imagine while preserving some provisional commonalities.
I feel for Kassaine. All I can say is that the CNN crew trested us VERY well. The producer could not have been more respectful and kind. The camera guy–Ken–they sent out to Iowa was fantastic, not the least bit patronizing. Indeed, he seemed to really get the idea of neurodiversity. Any time you film “the other,” though, you run the risk of inadvertently producing a freak show spectacle. I talk about this a lot in my disability studies classes at Grinnell. But the extent of this freak show effect can be greater or less–here it was much less than in many other things I’ve seen. I love the fact that DJ, for instance, gets to represent himself. His parents–Emily and I–are left intentionally wordless. Aside from Sanjay and the voice-over, we don’t see patronizing doctors pathologizing autism. I think there’s a real danger in lumping this in with all of the other unambiguously circus-like depictions of autism because it does advance the debate–not perfectly but significantly. Again, I’m sorry, Kassaine, that you were treated so poorly.
Kassiane
Nov 25, 2007 at 3:13 pm
I’m USED to it. I’m autistic but can talk. Im should EXPECT it. Just ask CNN. I intend to.
Kristina Chew, PhD
Nov 25, 2007 at 4:16 pm
I’m not sure that the medium of TV can accurately, truly, and fully convey the complexity and diversity of autism—-there’s always some “flattening out” of a topic. But discussions like these that look at what was left out, or what just got left out, can (might) keep moving the conversation forward—-for the next show…………
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