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.


  1. "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..."

    I kind of feel like this everywhere. I mean that is a particularly difficult situation you are in, but not too long ago I was in a room with people who take classes with me and they started talking about crazy people from mental institutions in very disparaging ways and it's the same feeling, like what would they do if they knew that was me? That is just really scary and demoralizing and it makes me want to disappear or never talk to anyone again. It's like you just have to deal with it or become more and more isolated.

    I'm trying to think of something nice (and less depressing) to say or maybe I'm trying to figure out how to say some wordless thing I already know that's nice but I think what you're managing to do is really impressive.

    I think being "out" can work out okay sometimes too. Maybe not for where you are but I believe it's possible for some people sometimes.

  2. Oh God i really feel for you Vivian. It's the same old, same old 'invisibility' issue. As someone who has Chronic Fatigue Syndrome as well as Aspergers, i had to confront the whole 'but you look okay' stuff, etc, etc, long before i had any clue that i had AS. I've had people treat me as tho i was feeble-minded becos of it - it used to really irk me, i felt like saying "It's my body that's disabled, not my brain!" (In fact i felt i was smarter than them, usually!)
    I want to say also i love your analyses of disability issues. It puts into words what i have long felt, but not been able to put into words. I worked in a hospital for intellectually handicapped children and young people many, many years ago, and i felt acutely how patronising and excluding people's reactions were to them, but i had no words, and even when i tried to say, well i think they deserve respect as people even if they are mentally handicapped, i was virtually laughed at, or told 'oh, they're not aware of how you treat them', or that it didn't matter how they were treated cos they were only 'retards', or words to that effect. I was made to feel stupid for even saying it. So i'm glad people are now sticking up for the rights of the disabled and the autistic, even if we aren't making much headway yet, and there's a long way to go on changing people's attitudes.
    Keep up the good work! :)

  3. Hi Amanda,

    I read your blog because it gives me valuable insights into the mind of my son who is a 13 year old aspie. This post triggered me, which I'm ok with because it helps me to get handle on myself. I hope that you understand that it will get better with time.

    Some perspective. Many, many adults dealing with children, whether the children are disabled or not, do not understand or have misconceptions about how to deal with tantrums. I hope that you understand that you are in a unique position to educate this person with gentle words and gentle examples.

    Using the power that you have to influence people may help you to feel better when these kinds of situations happen. Eventually the flashbacks can be changed as your memories of yourself in these situations changes to that of an effective and empowered person.

    I wish that I would have been able to face triggers the way your are when I was your age. Willingly being in your situation demonstrates your strength and I really have to say how fantastic that is and how much that will help you to heal.

  4. ~TechWhisperings,

    1. "This post triggered me, which I'm ok with because it helps me to get handle on myself."

    ...I do not think that word means what you think it means.

    2. I'm pretty sure Amanda is much, much more likely to be genuinely triggered by nondisabled people telling her to be gentle with bigotry and abuse than pretty much anything else.

    3. In fact, the post is pretty much about that.

    4. No one except Amanda gets to tell Amanda how to deal with being triggered. Your gentle suggestions are actually incredibly unhelpful and invalidating.

    5. Many, many adults dealing with children, whether the children are disabled or not, do not understand or have misconceptions about how to deal with tantrums.

    ...the fact that you refer to what is being discussed as "dealing with tantrums" tells me that you may be one of those people!

    6. "I hope that you understand that you are in a unique position to educate this person with gentle words and gentle examples."

    I would like you to consider what it might be like to always be in a position, by virtue of your existence, wherein you are expected to educate other, sometimes abusive, people about your oppression and gently remind them, over and over again, that you and those with your disability are in fact humans. Perhaps you will be asked to provide proof. Probably you will be expected to apologize for being harsh or unreasonable. You yourself, of course, will never be owed an apology, and any time you might want to take to your personal blog to lament, just for a second, living in a world where you can never just *be*, you will be scolded.

    I hope you realize that your comment actually just poured salt on a wound and then rubbed lemon juice in it.

  5. Aargh, it wasn't till after i signed off last nite, that i realized i'd called you 'Vivian' instead of Amanda! Duh! (Slaps side of head...) I can only plead that it was late at night my time. My apologies.
    And 'juststimming', i think you hit the spot, right on. I spent many years in the feminist and anti-racism movements in my country. Many of the same attitudes prevailed in people's reactions to our trying to raise their consciousness. I constantly see similarities between those movements and the neurodiversity and disability rights movements.

  6. My PTSD only comes from an occasional whipping or pop in the face and a tad bit of sexual abuse. It's really sad that getting a handle on it is perceived as not understanding it. Or that giving someone the notion that things can get better is somehow harming them.

    If you think that people need to know how to handle tantrums is biased, you must think that tantrums are unique to autistic people. I wish that were the case but I watched my parents beat the hell of my neurotically and quite socially gifted brother for years for tantrums. I'm sorry to say, that just isn't a special that you uniquely experience or own.

    The same parents who were so brutally abusive to my brother gave me information on how to handle tantrums with my aspie. No violence, no name calling, no meanness, and it worked. Why would the very same people who used to beat to handle tantrums now advice non-violent and non-harmful methods? People can in fact learn, and do. The fact is, that is how I handled my aspie's trantrums so that he stopped having them. Just let him have them, ignored them. And he eventually stopped having them. But for some bizarre reason, doing nothing seems to be the hardest thing for many people. I'm under no illusion that every autistic person will stop having tantrums. But damn, why not give a person a chance to stop, do you think they are fun for the person having them?

    I am afraid that the autistic community overestimates that ability of the neuro-typicals to just be themselves. Neurotypicals are not so cookie-cutter alike and we don't come born into an autistic social club that gives us a place to fit in. To fit in we must model ourselves to fit in situations, to be professional in a workplace, to hide our emotions, not say certain things, and to maintain all kinds of social niceties even with people we don't like.

    Any person, autistic or not, can have a positive impact on the people around them. Silly me, to think that the autistic or human like the rest of us.

  7. TechWhisperings, what people are objecting to is the suggestion that autistic people are obligated to "gently" teach abusive people to stop being abusive. (That may or may not be what you intended to say, but it's definitely how you're coming across.)

  8. Concerning the words "cissexism" and "heterosexism" and the problem of no other words to use when it's more about hatred, there is a blogger who has proposed other words, on this page: http://angerisjustified.wordpress.com/definitions/ :
    Transmisogyny – hatred of trans women (and often other CAMAB non-cis/non-‘masculine’ people).
    Transhatred – hatred of trans/non-cis people.
    Misohomy – formerly homophobia, term coined by me to avoid ableism. Hatred of gay people/non-heterosexual people (see below).
    Misahetery – hatred of (mis) non (a) heterosexuals (hetery). Coined to avoid monosexism.
    The blogger is an agender trans person whose blog is named "Anger is justified" and I think those words can be quite useful.

  9. Wow, Julia/Juststimming, I was really uncomfortable with that Techwhispering's comment and I didn't know why because it sounded nice. But that was why, even though I know it wasn't malevolent.

    Just to be clear, when I said that I thought what Amanda Forest Vivian was doing is impressive, I meant the stuff she's doing for disabled people and the example she is setting for people in general (not as a disabled person so much as as a person), but I also meant with the crying and fear and self injury. Because it seems to me that it's ultimately all part of the same thing and you can't chop them up like that.

    At no point can "the flashbacks can be changed," I think. Not that kind, not really

  10. Oh my god Amanda, I just found this because I've had pretty limited internet access for a while, but wow. I'm really sorry you're having this experience. It's infuriating, too, that camp management has responded to the situation by telling counselors to stop "gossiping" about this person's abusive behavior, instead of, I don't know, actually intervening to stop the behavior in question.

    I have to say I'm undergoing a similar thing. The tutor I'm shadowing is nice and bubbly and kind towards me, but is willing to treat the kid we work with in a pretty terrible way. And it makes me feel so fucking bad about how nicely she treats me, because I feel like it's all based on this false assumption that I am Like Her and not Like Them. She thinks that I don't belong to that select group of people with whom she just turns off her human decency - but I do, and oh god oh god what the hell would happen if she found out.

  11. I'm afraid this is going to be one of those comment threads where instead of replying to a bunch of comments that they really LOVE (and I love all these comments a lot), the original poster just replies to one comment that bothers them, and ignores all the others. Sozzer.

    TechWhisperings, I think what bothers me a little is that you made a lot of assumptions about what happened and what was said, when my description of what happened was pretty vague (not intentionally to mislead, but because what I was writing was more about how the situation is different for me than it is for my coworkers, less about the situation itself).

    1. The conversation originally started being about meltdowns, but he said the same about other campers who process slowly, are reluctant to do activities, wander, etc.

    2. He wasn't the one dealing with the meltdowns, I was; the camper was my camper. Also I wasn't as triggered by what this guy was prescribing as I was by the fact that he was making a moral judgment on campers for things that are part of their disability. (I know that non-disabled people sometimes have this attitude toward disabled people, but I don't expect it from people who actually have sought a job working with disabled people.)

    3. He said that his parents hit him and he thinks that's a good thing, and "my campers are lucky they're not my kids." Which would seem to indicate that he has deep-set beliefs and I might not be able to change his mind.

    4. That said, I did have multiple conversations with him in which I expressed I didn't agree with him (and all of my decisions as a staff person, some of which he's very contemptuous of for not being tough enough on campers, shows that I disagree). Every time, he didn't change his mind, I became more and more (invisibly) upset, and I regretted not cutting off the conversation as soon as he made the triggering comment.

    5. When you say I'm in a "unique position" I wonder if you mean because I am disabled and I can educate him by explaining my disability? However, I've already explained why I don't like to be open about my disability at work. (If you mean something else, I'm not sure what you mean by unique.)

    I respect that you are okay with being triggered and feel that it helps you, but I don't want to put myself (or the campers I am responsible for) through emotional pain or physical danger, so I would like to avoid triggers. I don't have PTSD and am using the word trigger in a more colloquial sense to mean "something that might cause me to have some kind of mood or dissociative episode." I have heard though that for many people with PTSD being exposed to triggers repeatedly isn't therapeutic and can make things worse.

    I do appreciate your kindness and the fact that you want to give me advice, but sometimes when I am just expressing what something is like and someone else gives me suggestions, it bothers me because I'm already trying as hard as I can.