25 July, 2010

just blurted out really fast while I'm on my break

Some counselors throw around the term high-functioning like it's going out of style. It sort of makes me want to throw up. Admittedly if you search this blog you will find instances of me using the term, which I'm not proud of having done, but at least I was using it to refer to differences that actually matter. Now I say "severely disabled" and stuff like that, which is a less fuzzy way of expressing what I mean.

For example, last session I had campers who didn't need help going to the bathroom or brushing their teeth, and now I have campers who do. These differences affect a person's experience in many ways. But this isn't what certain counselors are talking about at all--that nebulous quality of "functioning." The way I know this is that they never say "high-functioning" about campers who have Down Syndrome, or have no eyes, or scream when they get excited--even though some campers with those qualities are very "functioning," that is independent. "High-functioning" means looking normal.

At first I was really refreshed by how little counselors seemed to talk about passing. (Not that they know they're talking about passing--more on that later, since it's really the part that bothers me the most.) First session I had a camper named Joan (names of people I don't like have been changed) who was in the Uncanny Valley--which is to say that if I met her on the street, I probably wouldn't know that she had ID, but she was obviously different from the standard person--she walked differently, she made different facial expressions, and she seemed younger than she was.

I had trouble with Joan because all her UV attributes made her come off as a particular kind of non-disabled girl who really triggers me. I felt weird because other counselors just talked about Joan the way they talked about other campers (what she was like, what she did, whether they liked her or were annoyed by her) but I was also impressed that no one was interested in mentioning that Joan didn't look stereotypically disabled. I wondered if maybe I was the only person maladjusted to notice such things.

But soon other counselors noticed, because passing was a huge issue for campers like Joan and her friend Rachel (also someone I don't like). Rachel became obsessed with the idea that she could be mistaken for a staff person and talked about it constantly. She, Joan, and some other passing campers would always try to do our jobs for us, and would also talk in a babyish way to campers with more severe disabilities.

This was frustrating to many counselors because it's annoying to have someone trying to do your job for you, and also because we didn't like seeing campers we liked being treated in a disrespectful way by Rachel and Joan. But I feel that other counselors didn't really know how to process what was going on or explain it to themselves because they lacked the experience of being disabled and having passing be incredibly important to you. They would sit around talking about how "high-functioning" Rachel and Joan were and how they were treating people who were less "high-functioning." Which isn't what it was about at all. (Note: some people know now, but when this conversation took place none of the counselors knew that I am disabled.)

Counselors: Joan talks to Dan like he's a dog instead of a person! And he's much older than she is! And the way she talks to David is so annoying. I loved this one time when she was talking to Jane and babytalking to her, and Jane just turned her body away from Joan. It was so great. These campers who are high-functioning...I mean, it's good they're high-functioning but they just...

Me: I don't even know what that means.

Counselor: High-functioning? That means--

Me: No, I mean I know what it means, but David is such a nice person and enjoys everything so much, I'd rather have David than Rachel or Joan.

Other counselor: Well "high-functioning" doesn't have anything to do with how nice someone is, it just means how independent they are.

Yeah, keep telling yourself that. Then why aren't any visibly disabled independent people referred to as "high-functioning?" And why don't people like that ever try to be staff? Because it's about passing! Trying to be staff is about trying to say you're more competent than people who look disabled. If you look disabled you don't get tangled up in that shit, you have a whole different set of problems (such as being treated like a baby by the people who do).

About a minute later, a counselor said, "You know, the thing is...I would rather have David. Because Rachel and Joan are so high-functioning, but...when people are high-functioning, they let it get to their head."

Baaaarf. That statement is a really horrible thing to say because it implies that people with ID should know that they're inferior to "us," or something like that, and Rachel and Joan don't know. But I generally respect the person who said it. And I know that she likes and respects David and many other campers. So I'd like to think that she didn't really mean what she said and was just trying to make sense of what was going on.

Unfortunately I don't get to forget that, because in sessions two and three (Rachel and Joan were here first session) there have been many more instances of passing campers being shitty to campers who don't pass. And now the counselors are really primed for it and if I go to sit in the staff cabin I get to hear a bunch of people going, "You know Sam is so high-functioning, I wouldn't even know he had a disability" and on and on and on. I end up just getting up and leaving the room because I don't know how to say, you guys have no idea what this is because you're not disabled, you have no idea what you're dealing with and you are mischaracterizing everything.

Second session, when my favorite camper's brother died and he had to go home, my co-counselor told the camp director: "We should tell the other guys in the cabin, it's a very high-functioning cabin, they're high-functioning people, they'll understand." OMG STFU! You just learned that word and you don't even know what it means. We had nice, sensitive people in our cabin. They were compassionate. Yes they also happened to be able to talk and dress themselves, but that's not why we told them. I don't give a fuck if people can dress themselves, I have to say, it's so far down on my list it's not even visible.


  1. you are invited to follow my blog

  2. I'm running into some issues like this at the place I'm working right now. It's just for kids with autism (I actually got services there when I was little) and we have two groups, with different goals, that meet on different days. The Tuesday group is working on engaging with others, communicating needs, being able to tolerate being in a group, etc. The Thursday group is working on group dynamics, negotiating, non-verbal communication, etc. Some of the staff call the Thursday group a "higher-functioning" group by way of comparison. We also have 2 NT kids in the Thursday group (both sisters of autistic campers), and one of them is bossy and mean sometimes, but they don't really stop her from doing so because she's not the one whose behavior they're supposed to change.

    I like your label "staff infection." I feel incredibly guilty about being staff, especially at a place where I got services as a child. I remember resenting the staff who made me do things that were uncomfortable and scary, and now I am that person and I can see that some of these kids resent us. Do you feel that way?

  3. Right.

    My gut is wrestling and thumping and wrenching.

    My logic ... something else there.

    Hi, Steve and Zoe.

    Some points:

    The street, for me, tends to reveal physical impairment rather more than intellectual impairment (though this may not be mutually exclusive). I don't get close up enough to see people's faces. And intellectual impairment/difference is for me more revealed (reified!) in a social, institutional setting, such as school or the workplace. (Though the latter may not be relevant).

    Can so relate to Joan and Rachel, both in their wanting to pass, and the (sometimes obnoxious) ways in which they tried to do this. The "being staff" thing really came across when Emma Thomson (founder of ASSGO) was in a care home and felt she could do a better job than most staff, because of all this lived knowledge.

    And even if counsellors don't know you have a disability, you do. And your friends do.

    And it's completely okay for counsellors to express preferences, in verbal and non-verbal ways - among counsellors.

    Amanda, you said:

    "That statement is a really horrible thing to say because it implies that people with ID should know that they're inferior to "us," or something like that, and Rachel and Joan don't know."

    Yes. And I barf with you. Psychology of School Learning talked about this in a big way. Nobody is free from the hierarchy, and we all participate and are complicit.

    My sense is that they may know all too well they're inferior, and are trying to get out of that or escape that by identifying with a valued role.

    Straight out of Wolfenburger's Normalisation. And Goffman's books.

    And Zoe, you said:

    "I remember resenting the staff who made me do things that were uncomfortable and scary, and now I am that person and I can see that some of these kids resent us. Do you feel that way?"

    I don't know. I would probably feel guilty about the whole resentment, that I had caused this in a child. I would be unable to work. And, just, the involvement.

    It's interesting to see what people talk about when they don't know they're talking about it.

    And things like compassion and sensitivity would be high on my own list.

    And TV Tropes are good for character types and just things which are well, a little bit off.

    Will re-read the posts about passing and Passing as Ethics in the light of this.

  4. Zoe I don't really feel guilty here because I don't think that the camp has particularly fucked-up values/ideals for the campers. I mean our goals are not to change their behavior--the only time we try to change someone's behavior is if they're refusing to follow the rules/schedule of camp (for example if they won't get out of bed in the morning, or trying to run out of the dining hall). And that's something I really appreciate about being here.

    Of course some definitions of "wrong behavior" are sort of shifty--my favorite camper, who I had last session, was apparently much more calm and happy than he was last year, because his tendency to touch everyone and ask repetitive questions was treated as neutral/positive by his Head Counselor, and my co-counselor and me. Technically we're supposed to be doing only "high-fives and handshakes" (that is the buzzword you say when a camper tries to hug or grope someone), but his Head Counselor and I would hold hands with him and let him touch our hair, and we would all just gently tell him to stop when he was trying to hug people. Apparently last year, his counselor couldn't stand him and everyone was constantly going, "Scott! Hands off!" This year, some other counselors tried to tell me that I shouldn't let Scott "be so touchy" (even though the camp director agreed it was helping him). Sometimes I feel weird because there are some counselors who are more harsh about wanting to correct behavior, and I feel like they're judging me for not correcting behavior very much.

    I guess I don't understand whether you feel the place you're working at is unethical. I mean, are the "skills" they're teaching useful skills? Also do the other people there know you're disabled?

  5. I am still confused about the ethics of the place that I'm working. The skills that they're teaching, like socializing and waiting and being able to be in a new environment, I think are really important, and I know if I hadn't been taught those skills I would have a harder time. But they do some things that I think are problematic, like talk about the kids in front of them and ignore them when they are stimming. Also I think a lot of the other staff don't recognize that what they're asking the kids to do is hard for them. Even if a kid is so overwhelmed that they are melting down sobbing, the staff might say that they're "just being stubborn."

    I think it would be really nice to work somewhere were the goal wasn't to change people's behavior.

    Some of the people I work with know I'm disabled, and the rest probably suspect that I am because on Tuesdays, with the louder group, I wear big earphones for sound reduction.

  6. Hi Zoe.

    The skills you talked about in the first paragraph are very general and abstract. And of course they are real in real life (whatever they might be).

    The problematic behaviours - of the staff - are easy to see and not to see, in the case of ignoring the kids when they stim. And melting down sobbing doesn't equal stubborn in my book. I must admit I think tears are a gift and a honour - all freely expressed emotion and beyond emotion is. "Um, people, it's an emotion, not a behaviour".

    And what a lot of things I have done and not done because people talked about me in front of me!

    I think an ethical goal would be to understand what it's like to be that person in that environment. But how do we codify that? How does a person look and feel when he or she is understood in an optimal fashion? How would they be in the world?

  7. Adelaide -- I feel like that is maybe a problem with some of the staff, that they can't see where the kids are coming from. I admit that's easier for me than for them, though, since I have been in these types of programs as a kid before.

    Oh and by the way Amanda, I did get your letter and it was awesome. I jumped up and down when I got it. I was totally going to write you a real on-paper letter in return, but then that didn't happen and when I remembered that I had wanted to do it I didn't know whether it would get there in time. (Sorry. I really wanted to do it, I'm just bad at doing things.)