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.