16 July, 2011

I can't wait till I have a chance to synthesize my two email addresses so I don't have to go to as much effort to post here. I can never really dash off posts here, and just end up posting things on tumblr that are too long for tumblr and that I don't really edit the way I would if I was posting them here. Posting here has started to feel like a Big Deal where I have to write something well-organized.

This may be selfishness as a staff person, in fact it totally is, but I think the level of intense surveillance I'm required to keep up working at this camp is a little bit ridiculous. Someone I know recently got threatened with being fired because she forgot two of the campers she was supposed to bring to the pool--obviously forgetting to bring someone to an activity is bad, but I doubt she would have gotten in much trouble if she'd been with the campers and just lost track of time or forgot they were supposed to go somewhere. I think the really bad thing about what she did is supposed to be that she left them unsupervised, but they're two teenage girls with intellectual disabilities, not convicted felons. I'm sure their parents leave them home alone just as the parents of most teenagers do, but when they're here, suddenly we're supposed to be treating them like very young children.

And I mean very young--I volunteered in a mainstream first-grade class this spring, and I was surprised every time the teacher allowed a 6- or 7-year-old to go walk to the bathroom alone, because I'm so used to the idea that IF YOU'RE RESPONSIBLE FOR SOMEONE, YOU HAVE TO ESCORT THEM EVERYWHERE. Even adults with disabilities who live pretty independently and definitely walk to the bathroom by themselves when they're not at camp.

It kind of reminds me of the way Danny's teachers usually acted like there was something dangerous about special interests, but for his birthday they let him have a party totally focused on his special interest, and allowed him to talk to them about it. It was like they could hold two contradicting beliefs at once; there was a part of them that thought his special interests were cute and perfectly acceptable, but when they were doing their job, they thought the opposite. The rules about how to treat campers seem to contain a similar paradox, at least in their application. We know lots of them can do this stuff on their own. Most of us would say, if asked, that disabled people deserve to be treated "just like anyone else." But we don't treat them like anyone else at all, and if another counselor doesn't stand in the bathroom while their camper is taking a shower, we all cluck about it. We don't act like it's just a deviation from policy, but like it's actually dangerous.

I want to come back to camp next year because so many of the campers are really special to me and given location, taboo, and different writing/Internet abilities, we can't really be good friends outside of camp; but it's hard for me to imagine I will come back, because it's such a time-intensive job that I rarely get the chance to even read books or write posts or letters.

I keep daydreaming about trying to get a job at one of the two camps I enjoyed going to when I was a teenager. One of them is CTY, which is supposedly an academic camp for kids with high test scores, but is functionally a social space for kids who are different from their classmates. In my group of friends there, almost none of us had any friends at home. The other camp is a farm camp where the campers work on the farm and do group therapy together; when I went there, there were a fair amount of kids who had learning/developmental/psychiatric disabilities and had come to camp because someone decided it would be good for them, but there were also a lot of kids who had no disabilities and just enjoyed the environment. And, importantly I think, you didn't always know which was which. I've written some snarky things about this camp but I really admire what they do, ultimately.

I keep getting excited about the thought of applying to work at CTY or farm camp, not just because they're places I like, but because, oh my gosh, the freedom of being allowed to let campers go to the bathroom by themselves and only closely monitoring them if they actually need close monitoring and support! But then in the same breath I can't not just be staff, I can't help thinking how ridiculous it is that once you put people under a certain label all these new potential dangers emerge, like, THE DANGER OF WALKING BACK TO A CABIN ALONE, and, THE DANGER OF PUTTING YOUR HAND ON THE KNEE OF THE BOY YOU HAVE A CRUSH ON, that you must be protected from by your staff!

(On a totally different note, I've been meaning to link this since I read it, their parents are fantastic.)
I just found this (Let Me Be Played) and I really needed to read it. It's weird to realize I'd gone through all this before.

The guy who triggers/stresses me at work is leaving due to a family emergency. I think he will think of this camp as a place where he didn't get along with most of the other staff and they gossiped about him. I don't think he will think much about the actual work he did.

The other night, he was standing in the bathroom drumming loudly on a wall, presumably to be funny, while waiting for his campers to finish getting ready for bed. I said, "Gosh you're just like my campers from last session, they were always banging on stuff and you always think someone's knocking on the door, but it's just them."

First session my campers were 10, 11, and 12; two of them had autism and the 11-year-old had a few developmental and emotional disabilities. The two older kids, especially the 12-year-old, RL, would constantly bang and drum on surfaces. It wasn't necessarily because they were angry or anything, it was just what they did. RL was really physically affectionate so sometimes I'd suggest he bang on my arm instead, and he would start gently tapping it, which was a bit quieter.

Anyway, I said this to my coworker, and he goes, "I think your campers just did that to scare you."

I know this is only one sentence, but did it ever manage to upset me. I spoke to Zoe after and she kindly helped me pull out all the ways this SUCKS:

1. everything a disabled person does must have malicious intent
2. people with autism don't just sometimes bang on stuff or do other repetitive behaviors, just because it's how they are
3. I'm some kind of pussy (my word, not hers) who's afraid of people banging on walls??
4. for some reason, I'm the kind of person that some very nice little kids would want to scare, probably because...drumroll please...I'M NOT GOOD AT MY JOB BECAUSE I DON'T WANT TO CONTROL PEOPLE

Oh, gosh. All I should ever want is for people like him to disapprove of me.

04 July, 2011

bad brains making bad decisions

(from bad brains making bad decisions)

First off, it's really hard not to write about sex because:

1. The other day I read all the comments in an article about a British guy with an intellectual disability who had been ruled by a judge not to be qualified to have sex. Some of the comments were by people who had worked with people with ID, and were saying things like, "When people with ID have sex, they can't handle it emotionally and they go from partner to partner and get very upset."

2. When I was 15 or 16, I read this livejournal flamewar that I'll always remember. Basically, a woman who was into BDSM, who had kids with autism, suggested that people with autism shouldn't be doms because they wouldn't be able to tell if their partners didn't like what they were doing. Other people said that if this was an issue, the couple should use safewords; the woman replied that she didn't believe in safewords because you should be able to tell how the other person feels.

What do these two incidents tell us (besides that parents and staff are assholes and should never talk)? Well, one thing that stands out to me is that both people talking are implying that there's a standard everyone should meet in order to be able to do a certain thing. If you want to have sex, you have to not become distraught by it, or be reckless in entering into affairs and relationships. If you want to be a dom, you have to be able to tell if your partner doesn't like what you're doing, without them saying so.

But...for some reason, this standard is only being applied to people with disabilities.* No one is calling for immature and overemotional non-disabled people to be banned from having sex, and presumably the woman who was so concerned about autism and BDSM doesn't go around telling non-disabled couples that they shouldn't be doing BDSM if they happen to not be able to read each other's body language.

(*It should go without saying that I don't think either of these judgments about developmentally disabled people is true. But even if they were it still wouldn't be fair.)

By the way I was semi-joking because now I'm going to talk mostly as a staff person, oh noes. During training for my job at summer camp working with adults, we were being given a talk about making sure guys shave, or making sure you shave them if they can't do it. Our boss said, "Nothing makes me angrier than seeing a person with a disability walking down the street with a stain on their shirt and stubble."

But nothing makes me angrier than the idea that if a disabled person doesn't look conventionally put-together, that is a PROBLEM and they're not receiving adequate support.

Let's say a disabled guy gets out of bed in the morning and decides not to shave because he's lazy, or because he thinks stubble looks cool, or because he only shaves when he's going to be kissing his girlfriend that day (haha, double panic, disabled people who are lazy AND kiss). He puts on a stained shirt because even though it's stained, it has his favorite movie character on it, or it belonged to his brother who he really likes, or it's comfortable for someone with his particular sensory issues.

All good decisions. Well, not necessarily good decisions. I personally think stained clothes are 100% gross and would never wear them. But these are decisions that a non-disabled guy might make, and no one would seriously respond with, "Someone ought to be taking better care of him." Yes, this ties into the privilege checklist.

Dave Hingsburger made a post last week called Offering, respecting...a huge difference, in which he talked about the difference between "offering choices"--i.e., choosing the set of choices a person can choose between--and respecting any choices a person makes. "Relationships, yes ... kissing, no; movies, yes ... boozing, no; celery, yes ... smoking, no." To me, saying a person can either be cleanshaven or have a beard is offering choices; saying a person can have whatever kind of facial hair they want is respecting choices.

As I was thinking about this I started thinking...well, for me as a staff person there's probably a limit. I mean, if someone never wanted to brush their teeth I would make that very difficult for them. Which I was thinking made sense, because brushing your teeth is just...well, it's not just about how you look, you have to do it.

But then I remembered when my friend found out that her non-disabled boyfriend hadn't brushed his teeth in weeks. Her reaction (and mine) was, "That's gross," but neither of us thought that someone else should start making him brush his teeth. I think there's a very small number of things that non-disabled people could do to get the reaction, "Someone else should be taking care of you because your actions are so incorrect." Most of the examples I can think of have to do with not eating, self-injury and suicide attempts, and addictions.

One of the commenters on Dave Hingsburger's post did bring up the issue of people having preferences in the short term that don't fit into their long-term plans, which I think is important. I just feel weird about brushing teeth now.

02 July, 2011

some disabled staff person fragments and facts

So I’m working at the summer camp I worked at last year, which is a sleepaway camp for teenagers and adults with developmental disabilities, and it’s reasonably progressive and all that. I mean, very, probably, I should be grateful.

But Disabled Staff Person is just hell. Always has been always will be.
I’m crunched for time and if I try to write a really long well-thought-out post about why this is, I’m afraid I might never finish it, so I will try to outline this briefly. I think it’s really weird that heterosexism and cissexism are commonly used words but that there seem to be no equivalents for other kinds of oppression. On the one hand it bugs me when people use words like heterosexism and cissexism about situations that are clearly about hatred of ssa and trans people; I agree that words to describe oppression ending in -phobia are problematic and should probably be replaced, but words like heterosexism imply the problem is about normativity and kind of erase the impact of actual hatred and violence and discomfort and fear.

But normativity also blows, and one of the most frustrating things about it is something that’s also one of the most frustrating things about being disabled in general--the feeling of not just pain but being sure that your pain isn’t really so bad and shouldn’t even count.
So during training for camp, we learn about disabilities obviously, and we sit there and someone goes, “So does anyone know someone who is autistic? What can you tell us about autism?” and someone else goes, “Well, I was an aide for a little girl with autism and they don’t like to be touched, like they really hate it.” This one guy even says, “Well, all the autistic people I know really hate the taste of ground beef.” Both these things are not at all universal and I find that the stereotypes about touch, in particular, can lead to a lot of problems. But even if they were saying perfectly accurate things, this is the most uncomfortable room for me to be in. I learned about autism not because I saw it, but because it was never outside me.

I can’t count how many times I have been subject to this kind of assumption, either in an able-normative group like in the above example or in a comment specifically directed at me--”oh, my daughter is interested in autism just like you are,” or the classic “good for you, it takes a special person to do that kind of work.” Clearly I cannot be interested in autism as something to “get into,” as it’s just always there for me to look at or try to escape; and I’m no more special as a counselor for disabled campers than non-disabled counselors are at a mainstream summer camp. But no one really considers that they might be directing their standard-issue comments at someone for whom what they’re saying doesn’t really make sense.

Sometimes I even get these comments when the person does know I have autism and probably would understand if forced to confront it that what they said is inconsistent. People also perpetuate able-normative environments when they know I have autism (like my professor who asked the class if any of us knew a person with autism who was in college). I guess they keep those two clumps of thoughts, “Amanda is disabled” and “disabled people are Other,” carefully spooned on opposite sides of a plate. The clumps never touch. They don’t change.
I believe you always regret telling. There are exceptions, like Liam and Noah, but definitely no one I have worked with or for. Obviously everyone knows horror stories about people who were suddenly considered unfit for a job simply because their superiors found out they had a stigmatized diagnosis, but being stiff upper lip I’ve never had occasion to experience this. What happens to me is quite small: I work out that someone will be okay, and I tell them, and it seems okay; or I have worked out that someone will be okay and I consider telling them because I feel close to them or I think it would be in some way relevant to something we’ve talked about. Eventually, through the accumulation of offhand comments and reactions I realize that while this person is more okay than most non-disabled people, the chasm between their outlook on disability and a disabled person’s outlook is, well, not massive, but no less galling for that.

If I’m lucky, the first piece of evidence I get is the person’s selective memory. I mention that I have autism and they act all surprised even though I already told them. Or I make a comment that has certain implications when made by a disabled person, and they respond as though it was made by a non-disabled person. This is kind of a cool situation because just as I learn that the person isn’t really so “okay,” they tell me in the same breath that they don’t remember I’m disabled--so I can just slip back under the radar, fuck yeah.

Or if I’m lucky, I still haven’t told them and then I hear them say something about how “fascinating” and “textbook” a camper’s stimming is. (I see your “Aww but she’s in school, that’s just how people act when they’re in school” and raise you a “I’m not saying she’s a bad person but would you want to be around someone who treats the way you move like something on the Discovery Channel?”)

If I’m not lucky, someone knows and I know they remember and accept it as a consistent part of me which is swell, but then I start realizing that they have a certain lack of faith in the capacity of disabled people to perform tasks and come up with their own ideas. One time this happened with someone I worked for, and the chill of knowing that despite their stated anti-ableist beliefs they probably wouldn’t have hired me if they’d known made me sure I never want to tell an employer about it again. After all someday I’ll need a reference.
You probably know this if you know me but for some reason I didn’t put it into words until a few days ago--my most surefire trigger to get in a state (crying, mania, self-injury/being suicidal) is being made to feel that my disability isn’t real, isn’t visible, or isn’t recognized by other people. In fact it’s hard for me to remember if I’ve had any states in the last year that didn’t have that at least as an aspect.

Last week one of my coworkers, who I had until then considered a friend and vice versa, told me that he thought campers who had meltdowns were “brats who needed discipline.” After unwisely plodding through a conversation about this topic, I ended up lying in bed for hours sobbing and thinking about stabbing myself with the scissors in my backpack (which I only didn’t do because I was sharing the cabin with three sleeping disabled kids). At maybe two I wandered outside my cabin and stood next to one of the camp bathrooms and called my best Autistic friend, who had to deal with my speech which was kind of in pieces. I was upset because what this guy had said to me had hit my trigger point, but also because I couldn’t talk to other staff about it. I mean, I did. I’ve contributed to this guy being unpopular by repeating his comments, because I really wanted to say them and have someone else say they were bad--and everyone did, but for other staff it’s not bad on the same personal level, it’s a professional disagreement, and ultimately I’m just one of many apparently non-disabled staff getting into some non-disabled staff drama.

Whereas for me it’s not about disliking him in a general sense, but actually feeling terrified and threatened; and almost getting sick from the distance between how kind and friendly he was to me (someone he thought wasn’t disabled) and how that kindness and gentleness apparently gets lost when he looks at a kid who has meltdowns or wanders or doesn’t listen to him.

Counselors have been met with and given a talk--no more gossiping about each other, and if we criticize each other we should do it directly. We’re supposed to move on from the drama. (Who is the we that is going to move on?)

That’s all for now. Fuck my life.