At one point, another person diagnosed with autism asked me why I would refer to myself as "bad brains" and if this was a joke. It's not a joke at all. The most obvious explanation I can think of for calling myself bad brains is that I'm committed to being as negative about disability as I care to be. I don't necessarily feel like people who talk about their disabilities positively are just characterizing themselves that way for political reasons, but that's not the way that I'm made. Maybe it's even part of my disability that nearly everything is the end of the world, and at the same time nothing is. It would be completely out of character for me to talk positively or even neutrally about being disabled, and I don't think I should have to do that to have my opinions about anti-ableism respected.
But this motivation--reclaiming negativity about disability--actually isn't even the major appeal of a bad brains identity. One of the big things I love about the phrase bad brains is that it can be used to indicate a lot of different things, and one of those things is a flaring up. It can be really hard to get respect from other people, or even feel that you deserve respect, if you don't have a disability that looks the same every day. When you are suddenly slow (or suddenly sad, and that makes you slow), or suddenly so angry that you can't tolerate doing anything slightly difficult or stressful, there isn't really anything to call this to try to explain why you're making what seem like very silly and strange decisions in an attempt to look after yourself, or why you can't do the things you can usually do. So I like to call it bad brains, as in, "I'm having bad brains today," or, "My brains are too bad to do that right now" or, "Sorry but my brains are about to go bad."
This isn't necessarily something that everyone understands, but some people pick up on it, some people in my life have learned what it means and, most importantly, it helps me explain and justify things to myself. It used to be completely unbearable because it felt unexplainable and overwhelming when things just went different for me and became much harder or more painful. I felt lazy and weak. At least now I can think of it as kind of like having a cold.
In addition to being really catchy and practical, bad brains is my identity of choice because it is so vague. I kind of hesitate to say this because I don't want to sound like I have some problem with having autism or that I don't identify with the Autistic community--obviously at any point when people with autism are being counted I will be specific and say that's what I am--but on a practical level and I guess a loyalty level, I don't really feel that AUTISM AUTISM AUTISM is the way to describe me or anyone. I'm just feebleminded, bad in the brain, slower than molasses going backwards, batshit, a lid-flipper, too stupid to live, NOS, awesome fuck-you surprise. Walking corpse. Magikarp refuses to evolve.
Autism is a big word, and I think if I attempted to say that what I experience is the definition of autism, that wouldn't be any more acceptable than people saying autism is a social disability. A lot of the people I feel really close to were diagnosed with autism--at the same time so were some people I couldn't feel less close to--so maybe let's just say that autism is a big word that describes what some disabled people look and act like, more or less, especially when they're young. I know this seems like a really aggressive rejection of the label, but I feel so extremely not represented by what professionals say about autism, while also being similar enough to a lot of other people who were diagnosed with autism that I don't think the classification is meaningless.
When I meet Autistic people who resemble the Asperger's stereotype (this is mostly visible in how they converse), I feel a certain sense of attachment and relief. But it's not any more than I would feel if I met someone with an intellectual or psychiatric disability, or even if I met someone who wasn't diagnosed with a disability but has a lot of similar stuff going on. In fact, in some cases I can feel a stronger sense of attachment and community (in terms of what we are like, and what our disability is practically like) with a person who belongs to one of the other groups than with a person who belongs to the group that's supposedly my group. It's true that all the people I'm close to online have autism, but that isn't the case with the disabled or disabled-ish people I'm friends with in real life.
I like to say bad brains because I think it is kind of a way of being more practical by addressing exactly what is going on. My early life doesn't really matter right now, what matters is what I have to manage and what I'm experiencing day to day, which is bad brains. It also matters what I have in common with other people because if we're dealing with similar things we can help each other. That "what" is bad brains, not autism.
Bad brains is not your medical history. Bad brains is just a fact.
26 August, 2011
17 August, 2011
why is arguing with you the only self-advocacy that counts?
I still feel totally sad about the [location redacted] drama yesterday. The Internet can kill you with the way it lets you interact with people you like theoretically from a distance.
I used to read [] and [name redacted, let's call him Ted] was one of those people whose blog you read and imagine that they'd probably be your kind of person if you ever met or talked to them. Now we've had an exchange where he told me there's this big difference between Zoe, me, Julia, etc., and people who "can't self-advocate" and if that statement offends me it's my problem not his.
The more I talk, listen, read, and write about anti-ableism, the more certain arguments and statements become painful for me to even hear. Which is kind of a huge problem and makes me think I will have to bow out of here sooner or later. But for the time being, I'll just say that the belief in a concrete division between people who can and can't self-advocate is really frustrating to me.
First it's frustrating because labeling some people as unable to self-advocate takes away their voice. Ari Ne'eman once wrote something about the difference between action and behavior. Actions are things that people choose to do for a reason and, if a person's not able to use words describe their feelings and needs and desires, the things they do are a pretty good window into what their feelings and needs and desires might be, and therefore are a form of self-advocacy. When all of a disabled person's actions are categorized as "behavior" that needs to be changed to look a certain way--instead of as communication--this is the act of taking away someone's voice.
But Amanda Baggs addressed this much more clearly in The Meaning of Self-Advocacy, maybe because unlike Ari and me she is someone who has been labeled unable to self-advocate, and isn't looking at this from the outside.
I really want to address the other category, the one I'm supposed to belong to: people who can self-advocate. Zoe was told she belonged to this group due to writing a blog post. I was told I belonged to the group due to writing a comment on that blog post.
Now, I'm sorry if I'm underestimating the power of the Internet, but I don't think writing a comment on a blog post is especially impressive, and by some people's standards it would not be self-advocacy. Arguably, neither is having a blog. I wrote something for ASAN one time but otherwise I have never been involved with any self-advocacy or disability rights organizations; I've never been to a disability rights protest or a self-advocacy conference, summit, etc.; I've never spoken formally to a group about being disabled, or about anti-ableism; I've rarely even tried to talk to people, informally, about anti-ableism; I've never written a letter to a newspaper or made a phone call in support of disability rights.
Some of these things--like speaking formally about anti-ableism--are things I might be able to do, but just haven't gotten an opportunity or motivation to do. Other things, like writing letters to newspapers and going to protests, are things I very much can't do. In fact I remember a time when I got really upset and felt like a failure for wanting to support anti-ableism when I wasn't able to write a letter to the newspaper.
Don't worry guys, my impairments will never stop emerging! In addition to this more obviously political stuff, there are some more personal acts that are often described as "self-advocacy." For a lot of my life my parents (and the very occasional support staff I have grudgingly been allowed) have been trying to get me to do these things:
*Successfully use disability services when I was in college
*Ask for help from teachers/professors when I was in school
*Ask for help from boss/coworkers at a job
*Explain my disability, when it is relevant to help I need
*Ask people to write letters of reference for me, or be a phone reference
*Call places to follow up after I've applied for a job
*Make my own doctor's appointments
All of these things I either can't do at all, or find so hard to do that they almost never happen. Why yes, I am looking for a job right now and I'm scared as hell, and if I don't get one or end up getting the only job I was able to drag myself through the application process for and am stuck with it no matter what it is...like, I really won't feel better when I think about writing a two- or three-sentence comment on Zoe's blog?
Ultimately, I guess I will feel better when I think about writing this blog (the entire blog, not this particular post) because I know that it's helped some other disabled people think about disability and ableism. And ultimately I guess I do consider myself a self-advocate and this blog a form of self-advocacy, but I don't think it fits into conventional standards of either political or personal self-advocacy. I think it pretty much is in there with screaming and smashing, because it is a last resort, and because most non-disabled people seem to think it is a waste of time.
So I guess what I mean to say is, I don't really think I am a self-advocate in a way that someone else isn't. And it's probably clear why I find it painful to be told I am, when there is so much I can't say for myself.
I used to read [] and [name redacted, let's call him Ted] was one of those people whose blog you read and imagine that they'd probably be your kind of person if you ever met or talked to them. Now we've had an exchange where he told me there's this big difference between Zoe, me, Julia, etc., and people who "can't self-advocate" and if that statement offends me it's my problem not his.
The more I talk, listen, read, and write about anti-ableism, the more certain arguments and statements become painful for me to even hear. Which is kind of a huge problem and makes me think I will have to bow out of here sooner or later. But for the time being, I'll just say that the belief in a concrete division between people who can and can't self-advocate is really frustrating to me.
First it's frustrating because labeling some people as unable to self-advocate takes away their voice. Ari Ne'eman once wrote something about the difference between action and behavior. Actions are things that people choose to do for a reason and, if a person's not able to use words describe their feelings and needs and desires, the things they do are a pretty good window into what their feelings and needs and desires might be, and therefore are a form of self-advocacy. When all of a disabled person's actions are categorized as "behavior" that needs to be changed to look a certain way--instead of as communication--this is the act of taking away someone's voice.
But Amanda Baggs addressed this much more clearly in The Meaning of Self-Advocacy, maybe because unlike Ari and me she is someone who has been labeled unable to self-advocate, and isn't looking at this from the outside.
I really want to address the other category, the one I'm supposed to belong to: people who can self-advocate. Zoe was told she belonged to this group due to writing a blog post. I was told I belonged to the group due to writing a comment on that blog post.
Now, I'm sorry if I'm underestimating the power of the Internet, but I don't think writing a comment on a blog post is especially impressive, and by some people's standards it would not be self-advocacy. Arguably, neither is having a blog. I wrote something for ASAN one time but otherwise I have never been involved with any self-advocacy or disability rights organizations; I've never been to a disability rights protest or a self-advocacy conference, summit, etc.; I've never spoken formally to a group about being disabled, or about anti-ableism; I've rarely even tried to talk to people, informally, about anti-ableism; I've never written a letter to a newspaper or made a phone call in support of disability rights.
Some of these things--like speaking formally about anti-ableism--are things I might be able to do, but just haven't gotten an opportunity or motivation to do. Other things, like writing letters to newspapers and going to protests, are things I very much can't do. In fact I remember a time when I got really upset and felt like a failure for wanting to support anti-ableism when I wasn't able to write a letter to the newspaper.
Don't worry guys, my impairments will never stop emerging! In addition to this more obviously political stuff, there are some more personal acts that are often described as "self-advocacy." For a lot of my life my parents (and the very occasional support staff I have grudgingly been allowed) have been trying to get me to do these things:
*Successfully use disability services when I was in college
*Ask for help from teachers/professors when I was in school
*Ask for help from boss/coworkers at a job
*Explain my disability, when it is relevant to help I need
*Ask people to write letters of reference for me, or be a phone reference
*Call places to follow up after I've applied for a job
*Make my own doctor's appointments
All of these things I either can't do at all, or find so hard to do that they almost never happen. Why yes, I am looking for a job right now and I'm scared as hell, and if I don't get one or end up getting the only job I was able to drag myself through the application process for and am stuck with it no matter what it is...like, I really won't feel better when I think about writing a two- or three-sentence comment on Zoe's blog?
Ultimately, I guess I will feel better when I think about writing this blog (the entire blog, not this particular post) because I know that it's helped some other disabled people think about disability and ableism. And ultimately I guess I do consider myself a self-advocate and this blog a form of self-advocacy, but I don't think it fits into conventional standards of either political or personal self-advocacy. I think it pretty much is in there with screaming and smashing, because it is a last resort, and because most non-disabled people seem to think it is a waste of time.
So I guess what I mean to say is, I don't really think I am a self-advocate in a way that someone else isn't. And it's probably clear why I find it painful to be told I am, when there is so much I can't say for myself.
16 August, 2011
How Indistinguishability Got Its Groove Back, part 1
My first writing about disability was about an ABA school that I interned at when I was 20, which was a very ableist and passing-obsessed environment. Being in that environment I was forced to confront things I'd tried not to think about.
I remember when I first started writing about this kind of thing I was very careful to say that I wasn't anti-ABA and thought ABA could be really helpful and useful. I've kind of dropped that whole thing, not because I'm against behaviorism--I arguably am a behaviorist--but because I guess I am against any school or therapist who identifies as "ABA." ABA is technically a way of teaching, not what is taught, but it has historically been associated with physical punishment and it still is very much associated with passing. So I tend to make certain assumptions about anyone who identifies with the label ABA without trying to apologize for or justify it.
Recently my dad was trying to convince me to work at a very old, famous ABA program, because of the benefits. When I pointed out that the person the program is named after used to give electric shocks to children to stop them from flapping their hands, my dad told me that he had researched this on the Internet and "they don't do that anymore." But this isn't enough for me.
It's not enough for professionals to refrain from the most obviously abusive practices, especially if they identify themselves with the doctor who introduced those practices. If you're going to work in an area that has that kind of history, you have to address that history. It's not enough to just stop hitting kids because you shouldn't hit kids--you have to think about why people like you were hitting kids in the first place, and how they got to a point where they decided it was okay, and how you might end up getting to a similar point.
I remember when I first started writing about this kind of thing I was very careful to say that I wasn't anti-ABA and thought ABA could be really helpful and useful. I've kind of dropped that whole thing, not because I'm against behaviorism--I arguably am a behaviorist--but because I guess I am against any school or therapist who identifies as "ABA." ABA is technically a way of teaching, not what is taught, but it has historically been associated with physical punishment and it still is very much associated with passing. So I tend to make certain assumptions about anyone who identifies with the label ABA without trying to apologize for or justify it.
Recently my dad was trying to convince me to work at a very old, famous ABA program, because of the benefits. When I pointed out that the person the program is named after used to give electric shocks to children to stop them from flapping their hands, my dad told me that he had researched this on the Internet and "they don't do that anymore." But this isn't enough for me.
It's not enough for professionals to refrain from the most obviously abusive practices, especially if they identify themselves with the doctor who introduced those practices. If you're going to work in an area that has that kind of history, you have to address that history. It's not enough to just stop hitting kids because you shouldn't hit kids--you have to think about why people like you were hitting kids in the first place, and how they got to a point where they decided it was okay, and how you might end up getting to a similar point.
09 August, 2011
So I'm back from working at camp and I have been feeling more and more that I don't want to be staff for people with DDs--I was going to say more on this later, but why don't I just tell you about it now. I wouldn't pass up an opportunity to work with people with DDs if it fell into my lap (I wouldn't pass up any job if it fell into my lap obviously), and might volunteer if I can find any easy/convenient way to do it. I want to return to camp every summer for as long as I can, because there are some campers I consider friends and can't have a long-distance friendship with because they can't write/read/talk on the phone. But I don't particularly aspire to have another job with that population. What I'm thinking right now is that I'd like to do personal care stuff in a hospital, which might include working for some people with DDs, but wouldn't primarily be defined that way. It is the definition that really gets to me.
I became seriously interested in working with people with DDs when I was about 19 (I'm 22 now). At that point I didn't think of myself as disabled or really even as being on the autism spectrum, even though I judged myself much more in the frame of my not-really-autism than I do now. I just knew that I felt safer and happier with people who had DDs, regretted the lack of opportunity to be around them when I was growing up, and couldn't handle the stress of working with and for "normal" people.
Ultimately it was a way of cheating. When I went into spaces where I was in a staff role, I was categorized as non-disabled by other staff; I could do or say pretty much anything, sometimes including telling people I had a disability and what it was, and it would never stick long enough for me to be categorized as disabled. People would forget or ignore anything that muddled the division between disabled people (campers/students/consumers) and non-disabled people (staff). People I told about my jobs would always tell me how "special" and "patient" it was for me to work with people who had DDs. So I got to be someone who was officially, unquestionably non-disabled, who was even an especially nice non-disabled person, while being around disabled people which was what I really needed.
I think through the positive presence both of people I've met through anti-ableism online and people I've been staff for, I've become someone who can no longer be so disconnected from the fact that I'm disabled. When I'm assumed to be non-disabled by other staff I feel erased; not just by definition, but also because anti-ableism and disabled friends are a big part of my life so it can be difficult to even talk to people when that isn't recognized. When other staff say ableist things, I take it personally, and the gulf between me and the staff people I actually like suddenly becomes enormous because they don't--even if they see a problem with it, it isn't about people like them.
Now that I'm no longer hiding from myself I find this terrifying and depressing to be around.
There was an in-between period where I felt guilty about staff work--putting myself in a situation that was more comfortable for me as a disabled person but also making it much easier for myself to access passing privilege. It felt like I was doing it at the expense of the "clients" or officially disabled people or whatever you want to call them, since I was trying to get the benefit of knowing them while also keeping very clear separation from them. But at some point this conflict disappeared. I don't feel separate from them, or want to be.
Because of that my old ambitions can never really work out.
I became seriously interested in working with people with DDs when I was about 19 (I'm 22 now). At that point I didn't think of myself as disabled or really even as being on the autism spectrum, even though I judged myself much more in the frame of my not-really-autism than I do now. I just knew that I felt safer and happier with people who had DDs, regretted the lack of opportunity to be around them when I was growing up, and couldn't handle the stress of working with and for "normal" people.
Ultimately it was a way of cheating. When I went into spaces where I was in a staff role, I was categorized as non-disabled by other staff; I could do or say pretty much anything, sometimes including telling people I had a disability and what it was, and it would never stick long enough for me to be categorized as disabled. People would forget or ignore anything that muddled the division between disabled people (campers/students/consumers) and non-disabled people (staff). People I told about my jobs would always tell me how "special" and "patient" it was for me to work with people who had DDs. So I got to be someone who was officially, unquestionably non-disabled, who was even an especially nice non-disabled person, while being around disabled people which was what I really needed.
I think through the positive presence both of people I've met through anti-ableism online and people I've been staff for, I've become someone who can no longer be so disconnected from the fact that I'm disabled. When I'm assumed to be non-disabled by other staff I feel erased; not just by definition, but also because anti-ableism and disabled friends are a big part of my life so it can be difficult to even talk to people when that isn't recognized. When other staff say ableist things, I take it personally, and the gulf between me and the staff people I actually like suddenly becomes enormous because they don't--even if they see a problem with it, it isn't about people like them.
Now that I'm no longer hiding from myself I find this terrifying and depressing to be around.
There was an in-between period where I felt guilty about staff work--putting myself in a situation that was more comfortable for me as a disabled person but also making it much easier for myself to access passing privilege. It felt like I was doing it at the expense of the "clients" or officially disabled people or whatever you want to call them, since I was trying to get the benefit of knowing them while also keeping very clear separation from them. But at some point this conflict disappeared. I don't feel separate from them, or want to be.
Because of that my old ambitions can never really work out.
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.)
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.
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.
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.
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