warning for dehumanization
At camp I made a friend named Zach. His family was friends with the assistant director, so he was hired in a pinch to replace a counselor who left (someone who was paid extra for his years of experience, but regularly talked about how this job was beneath him and he wished he could hit disabled kids). All the other staff knew about Zach before meeting him was that he had no “experience,” his family was Mormon, and he was the oldest of eight siblings.
You probably know where I’m going with this. There was a general idea at camp that people who weren’t “experienced” were going to be blindsided on the first day of camp when they met so many people with developmental disabilities. Every year, a few counselors would quit after a week or two and everyone was very understanding that this was “a difficult job” and they just couldn’t do it. (Of course difficulty is relative--at my last job it was considered normal to work full time while going to school and raising kids, so saying you were stressed by work or something was difficult just seemed ridiculous to most people. But almost everyone at camp was a full-time student at a liberal arts college, so the bar for “I can’t do this” was a lot lower.)
Everyone waited for Zach to express some kind of shock or stress about working with disabled people. He failed to deliver. He had a deer-in-headlights expression that we took for nervousness but it turned out to just be his expression. He was a quiet, gentle guy who talked the same quiet way to everyone, regardless of whether they had a disability or not.
I had swallowed the whole “difficult” idea myself and like everyone else I wondered if Zach could really be as unchallenged by working with people with developmental disabilities as he appeared to be. Was it possible that this wasn’t really a “hard job” that required “special people,” but just a summer camp counselor job like any other?
Zach and I became friends. We ended up sharing a lot of personal information--I usually hold back with people who aren’t bad brains, but he never gave any indication that things I told him about my life were scary or weird. Eventually, I got it together to ask Zach what made him be so chill towards disabled people.
“Well, I helped raise all my siblings,” he said. “No one here is as hard to get along with as a four-year-old. And I’ve gotten used to pretty much every kind of personality there is, so nothing surprises me.”
Now I don’t expect to convince most prospective employers of how special I think Zach is, because for whatever reason, most people’s idea of a good support worker has nothing to do with him (except that they like to hire people who know someone who knows someone).
As far as I can tell, your ability to get hired as a support worker is related to three kinds of meaningless experience: knowing someone who knows someone, having worked with the same specific population, and training/certification. When the third factor is there it overwhelms everything else because it’s often a legal requirement. I’m not saying there is an obvious solution to this but it just sucks that the pool of potential support workers is determined by things that have nothing to do with their aptitude for the job, and that people who could do a great job are not considered.
2
I already told you about experience, so let me tell you about training. In Ohio I became a State Tested Nurse Aide, meaning I was legally able to work in a nursing home (some home care agencies also will only hire STNAs/CNA/LNAs or whatever they’re called in your state, but as far as I understand this isn’t a legal requirement outside of facilities). It took two weeks to become an STNA. In my class, I mostly learned things I was never required to do or that were the opposite of what actually worked. I also learned things that people will do anything to stop you from doing.
Above everything in the STNA class, there was a strong theme that you should respect the preferences and dignity of the person you’re taking care of. This was something I would have done anyway and it was one of the things that my future coworkers would find the most incompetent and annoying. “I know you’re trying to do what they taught you in class, but you don’t have to,” STNAs and nurses would constantly remind me when they overheard me asking someone what she wanted. I’ve never had so many people call me gentle as an insult. One of the nurses came into a room just to tell me that I didn’t need to close the curtain when toileting someone. I tried to find more discreet ways to be discreet.
(Funny toileting story: one time I was changing a resident’s diaper when my charge nurse, Rachel, stuck her head in. “Amanda! Amanda!” I tried to finish changing him but she just stood there saying, “Amanda, Amanda, come on, I need to tell you something.” Not wanting to leave my resident lying naked, I hastily pulled his sheet up over him and followed my nurse into the hall where she described how she had won a power struggle with a woman who crawled out of bed and asked for help getting back in. “If you can get out, you can get in” was Rachel’s answer, and she waited until the resident dragged herself back into bed. After expressing sufficient awe at this great story--which I guess was intended to correct my “gentleness”--I was finally allowed to go put a diaper on my resident.)
I dimly remember from STNA class that requiring aides to go through training and pass a test was intended to make long term care facilities safer. But training people to say they’re doing things that they are heavily discouraged from doing is not really going to improve the situation for anyone.
Maybe it comes down to official, measurable harm and liability. At my nursing home everyone was constantly trying to reduce the number of falls, which they did by putting gym mats next to residents’ beds. If a person fell or crawled out of bed onto a mat, it wasn’t considered a big enough change of altitude to be a fall. You just put the person back in bed (or you didn’t, if you were Rachel) and no one had to chart it. Even if there was only one aide to thirty residents, it was rare for a mobility impaired person to be able to crawl out of bed and across the entire mat before anyone heard her alarm. When someone did get that far, the nurse would ask over and over, “Was she really off the mat and on the floor? Are you sure she wasn’t just almost on the floor?” if you didn’t get the idea the first time.
The number of charted falls decreased. We were doing well; people continued to try to get out of bed because no one was there to take them to the bathroom or comfort them when they were scared, but it was not an official problem.
Maybe the actions of a State Tested Nurse Aide can be argued not to be the facility’s fault because the person was state tested, so how could anyone have known they wouldn’t do a good job? Officially, maybe training is the only way of telling if someone is good, even if it doesn’t actually tell you anything. As with most things I write about, until people actually care about what’s going on and not what they can pretend is going on, I don’t think it will ever get better.
The truth is that what needs to happen to have good aides is not about classes or certifications, it’s about the people you hire and the environment you put them in.
3
On a semi related note, let’s talk about home care.
Imagine a person named Laura. She is a senior who needs some help, so the planets are aligned for everyone to start making her feel like she needs to go live in a nursing home. Sometimes she feels that way too, like it would be easier on other people and she doesn’t want to be a burden. But given the choice, she really wants to stay in her house.
Laura is able to get 24-hour help. An aide stays in her house to cook meals for her and remind her to bathe, take medication, and manage her diabetes. There are two factors that make this more affordable: 1. an aide with no certification can be paid minimum wage and an STNA isn’t going to be paid much either; and 2. if an aide works 24-hour “live-in” shifts where his job is mostly just being present or keeping the client company, he doesn’t have to be paid by the hour.
This is pretty cool, but it only works because Laura is able to take all of her medicine by herself. If Laura has shaky hands and can’t give herself her insulin shots, it is illegal for her aide to do it because he is not a nurse. How can Laura’s support needs be managed now? Will a Licensed Practical Nurse have to stay with her instead of an aide? Will a nurse come to her house every morning and night, give her the insulin shot, and then leave? Either way, Laura’s support needs become more expensive and complicated because of a task most people can learn to do in a few minutes.
For some people this might be the push that leads to them having to move into a nursing home, all because of the notion that you need to go to school for two years to give someone an insulin shot. And those are my thoughts on training.
PS. I was reading up and it looks like the insulin thing is specific to California, but I'm pretty sure there are other simple tasks (like giving eye drops and handing someone a pill) that have to be done by an LPN or RN throughout the US.
Showing posts with label camp. Show all posts
Showing posts with label camp. Show all posts
31 December, 2012
10 January, 2012
Every few days I think about camp and it starts taking my head apart.
Not because of the stuff relating to ableism and me being disabled, but just because I am not going back there, and can't ever go back there.
This man is an amazing person, who I had the incredible luck of knowing for two weeks, and then for two weeks again.
I will send him letters, because letters are important to him, but I know that he won't associate the name on the letter with me, even if someone tells him the name of the person it is from.
One time he made a drawing and when other staff asked if it was for Amanda, he said no like he was offended, and then he gave it to me and looked at them as if to explain. He's not necessarily an easy person. He is himself. A lot of things make him angry and it's easy for him to feel that people don't care about him if they don't talk to him or write him letters.
I don't understand his speech, so there's a lot I don't know about him. I did understand when he told me his mother was dead.
I used to have the idea of sending him letters with photos in them, but I feel like it's too late.
Not because of the stuff relating to ableism and me being disabled, but just because I am not going back there, and can't ever go back there.
This man is an amazing person, who I had the incredible luck of knowing for two weeks, and then for two weeks again.
I will send him letters, because letters are important to him, but I know that he won't associate the name on the letter with me, even if someone tells him the name of the person it is from.
One time he made a drawing and when other staff asked if it was for Amanda, he said no like he was offended, and then he gave it to me and looked at them as if to explain. He's not necessarily an easy person. He is himself. A lot of things make him angry and it's easy for him to feel that people don't care about him if they don't talk to him or write him letters.
I don't understand his speech, so there's a lot I don't know about him. I did understand when he told me his mother was dead.
I used to have the idea of sending him letters with photos in them, but I feel like it's too late.
28 December, 2011
last chapter of a very long story
Dear L,
I need to tell you something. I never completed the staff review form this summer because I was afraid that it would be obvious who I was even if I mailed it in anonymously, and that if I said what I thought, I would not be asked to return to camp. This winter, when I realized that I had not been asked to return anyway, I decided that I would probably write to you and tell you this.
I don't expect you to answer this but I do ask that you read it carefully and think about what I have to say, because I think that camp will be a safer and better place if you read it. I know you're busy with work and preparing for the summer, and that you may not get to it right away. But I have faith that you will read it. Thank you.
As you may or may not know, I was born with a disability. When I was growing up, I never went to a camp like [name of camp] and there were not many social groups for kids with my disability. When I came to camp in 2010, it was the first time that I was able to meet and get to know people with disabilities and this is one of the reasons that camp has been so important to me. Both summers, I told some other counselors that I am disabled and they were supportive, but I generally do not like to tell employers this for fear that they will assume I am not able to perform the functions of a job because of my disability.
In the first session of camp in 2011, a fellow counselor told me that he considered our young campers to be "brats who needed discipline," and that when his campers were annoying him, he wished he could hit them. He was angry with the campers for doing things like becoming upset, crying, being mad at him, or not responding to commands. I tried to defend the campers, but he said that he didn't see why I liked them so much because they were "just brats," and implied that I was bad at my job because I didn't share his views on how to discipline campers. (Through other staff, I later found out that this counselor would do things like bringing food to his cabin that the campers were not allowed to have, and eating it in front of them.)
After having this type of conversation with him a few times, I felt so scared by him that I no longer wanted to be around him. Given the attitudes he expressed toward people with disabilities, I didn't feel safe telling this other counselor that I am disabled. We had become friends during orientation, and he didn't understand that (from my perspective) we could no longer be friends. He expected that I would still want to spend time with him during breaks, but I now tried to avoid him, though I tried not to offend him or make it obvious what I was doing.
I found the situation so upsetting and awkward that I didn't know what to do. I strongly considered quitting camp and leaving immediately. It was hard to stay, but I chose to stay because I cared about my campers and because of the effects on the workload of other staff if I were to suddenly quit. When other staff would have conversations about this counselor, I would participate in them because I was so upset by the situation. I know that this wasn't a good course of action and I'm sorry for talking about another counselor when he wasn't there. It was wrong.
But, when I was able to talk to an authority figure about what happened, I felt like I was in more trouble than the person who had expressed a wish to be violent toward kids with disabilities. I had actually imagined that this counselor might be fired, but my concerns were not even acknowledged, and I did not get the impression that he was ever told his behavior was wrong. Instead, I was told that I shouldn't have "talked about him behind his back," as if it was just an issue of the two of us not getting along. (In fact, we had been friends up to that point. I didn't have a personal problem with him.) I was also told that I should have confronted him directly about why I was upset--but as a person with a disability, I don't feel safe confronting someone who acts so hateful about people with disabilities, and besides, I had already tried to talk to him about it several times.
This was a tough experience that I was really disappointed by, but I got over it and had a great time at camp. I worked hard and dealt with some challenging situations, like being a float in session three and being given responsibility of a very high-need camper in the middle of session four, when D quit. I think that I dealt with these challenges well; even when I was stressed, I never let it affect my positive relationship with my campers. I think this is the most important part of working as support staff, especially with vulnerable populations.
However, I felt like I was seen as a troublemaker after the incident in first session. Several times I was told off for supposedly doing things that I hadn't done, like smoking in camp buildings and disregarding the safety of campers. These things were not true, but the conversations about them always occurred in a public place and were very brief, so I rarely got a chance to explain. I didn't want to arrange a meeting with you to explain why I felt I was being held responsible for things that didn't happen, because it seemed like making a big deal out of nothing. But I knew that you were probably forming a bad impression of me, and I wasn't surprised to learn that I am no longer wanted at camp. I'm incredibly sad to get confirmation, but I am not surprised.
I know I am responsible for what happened because I should have addressed this while it was going on. I can't change it now. But it would mean a lot to me if you would keep my comments in mind when dealing with other staff and campers in future summers.
Thank you so much for reading all of this.
Sincerely,
Amanda
I need to tell you something. I never completed the staff review form this summer because I was afraid that it would be obvious who I was even if I mailed it in anonymously, and that if I said what I thought, I would not be asked to return to camp. This winter, when I realized that I had not been asked to return anyway, I decided that I would probably write to you and tell you this.
I don't expect you to answer this but I do ask that you read it carefully and think about what I have to say, because I think that camp will be a safer and better place if you read it. I know you're busy with work and preparing for the summer, and that you may not get to it right away. But I have faith that you will read it. Thank you.
As you may or may not know, I was born with a disability. When I was growing up, I never went to a camp like [name of camp] and there were not many social groups for kids with my disability. When I came to camp in 2010, it was the first time that I was able to meet and get to know people with disabilities and this is one of the reasons that camp has been so important to me. Both summers, I told some other counselors that I am disabled and they were supportive, but I generally do not like to tell employers this for fear that they will assume I am not able to perform the functions of a job because of my disability.
In the first session of camp in 2011, a fellow counselor told me that he considered our young campers to be "brats who needed discipline," and that when his campers were annoying him, he wished he could hit them. He was angry with the campers for doing things like becoming upset, crying, being mad at him, or not responding to commands. I tried to defend the campers, but he said that he didn't see why I liked them so much because they were "just brats," and implied that I was bad at my job because I didn't share his views on how to discipline campers. (Through other staff, I later found out that this counselor would do things like bringing food to his cabin that the campers were not allowed to have, and eating it in front of them.)
After having this type of conversation with him a few times, I felt so scared by him that I no longer wanted to be around him. Given the attitudes he expressed toward people with disabilities, I didn't feel safe telling this other counselor that I am disabled. We had become friends during orientation, and he didn't understand that (from my perspective) we could no longer be friends. He expected that I would still want to spend time with him during breaks, but I now tried to avoid him, though I tried not to offend him or make it obvious what I was doing.
I found the situation so upsetting and awkward that I didn't know what to do. I strongly considered quitting camp and leaving immediately. It was hard to stay, but I chose to stay because I cared about my campers and because of the effects on the workload of other staff if I were to suddenly quit. When other staff would have conversations about this counselor, I would participate in them because I was so upset by the situation. I know that this wasn't a good course of action and I'm sorry for talking about another counselor when he wasn't there. It was wrong.
But, when I was able to talk to an authority figure about what happened, I felt like I was in more trouble than the person who had expressed a wish to be violent toward kids with disabilities. I had actually imagined that this counselor might be fired, but my concerns were not even acknowledged, and I did not get the impression that he was ever told his behavior was wrong. Instead, I was told that I shouldn't have "talked about him behind his back," as if it was just an issue of the two of us not getting along. (In fact, we had been friends up to that point. I didn't have a personal problem with him.) I was also told that I should have confronted him directly about why I was upset--but as a person with a disability, I don't feel safe confronting someone who acts so hateful about people with disabilities, and besides, I had already tried to talk to him about it several times.
This was a tough experience that I was really disappointed by, but I got over it and had a great time at camp. I worked hard and dealt with some challenging situations, like being a float in session three and being given responsibility of a very high-need camper in the middle of session four, when D quit. I think that I dealt with these challenges well; even when I was stressed, I never let it affect my positive relationship with my campers. I think this is the most important part of working as support staff, especially with vulnerable populations.
However, I felt like I was seen as a troublemaker after the incident in first session. Several times I was told off for supposedly doing things that I hadn't done, like smoking in camp buildings and disregarding the safety of campers. These things were not true, but the conversations about them always occurred in a public place and were very brief, so I rarely got a chance to explain. I didn't want to arrange a meeting with you to explain why I felt I was being held responsible for things that didn't happen, because it seemed like making a big deal out of nothing. But I knew that you were probably forming a bad impression of me, and I wasn't surprised to learn that I am no longer wanted at camp. I'm incredibly sad to get confirmation, but I am not surprised.
I know I am responsible for what happened because I should have addressed this while it was going on. I can't change it now. But it would mean a lot to me if you would keep my comments in mind when dealing with other staff and campers in future summers.
Thank you so much for reading all of this.
Sincerely,
Amanda
22 September, 2011
So about advocacy vs. self-advocacy. I don't really like the term self-advocacy. I think in one of my blogger profiles I have "not self-advocacy" listed among my interests. Why don't I like the term self-advocacy? Because I am not a self-advocate.
For example, when I was five I broke my leg. I was a talking person who had two parents and a caregiver, but it took a whole day before anyone realized my leg was broken. My personality hasn't changed much since then. I don't really know why I am not a self-advocate, but I'm just not.
A problem I have with the word self-advocacy used in a political context, which was pointed out by someone in comments at the Thinking Person's Guide to Autism, is that it implies the advocacy of disabled people is always very specifically about ourselves. It also strikes me as some kind of weird attempt to avoid saying disabled person, as per fucking usual. "Some parents of children with disabilities talk to SELF-ADVOCATES!" No, dude. Some parents of children with disabilities talk to people with disabilities. It's not some kind of obscure political group and/or cult.
I'm just someone who talks about ableism and happens to be a disabled person. I mean, it's not this totally disconnected "I write about ableism and if you must know I happen to have a disability." I think I notice and care about certain things because I am disabled, and that affects the way my writing is. But my disability doesn't equal my writing (or my advocacy if you want to call it that) and it always bothers me when someone seems to be interested in my writing because I have autism and not because of the content.
Also, as I've said, I just am not a self-advocate. It's a personal problem. People who can self-advocate but can't write a blog have a different set of abilities from me.
For months I have been intending to write about a guy I used to be staff for. Let's call him Ron. I don't know if any of my former coworkers read this blog, but anyone who worked with Ron will know who I'm talking about when I say that his writing is really hard to decipher and would not be served well by the blogging format. I also don't think he could have an abstract conversation about social justice.
But anyone who has worked with Ron has had this experience: you're on break, or you're walking by on your way to support someone else, or you're brushing your teeth in the morning and this really distinctive voice comes out of the stall: "Good morning Amanda. Would you like to wipe my butt and spray deodorant under my arms?"
I always found it hard not to reply: "Fuck yes!" Not because I have a big attachment to wiping people's butts but because someone like Ron is a real hero to me. So many people go through life not asking for what they need. I remember being awed when a blind hallmate walked into my dorm kitchen and said, "Are any of the burners free? Which one? Am I putting the pan on the right one? Okay, can someone give me the spatula?" Something I feel like I'd rather die than do--which, I'm sure, is part of the problem. So many people go through life not asking for what they need that I know the revolution, when it comes, will owe at least as much to brave people like Ron as to speechless but talkative people like me.
For example, when I was five I broke my leg. I was a talking person who had two parents and a caregiver, but it took a whole day before anyone realized my leg was broken. My personality hasn't changed much since then. I don't really know why I am not a self-advocate, but I'm just not.
A problem I have with the word self-advocacy used in a political context, which was pointed out by someone in comments at the Thinking Person's Guide to Autism, is that it implies the advocacy of disabled people is always very specifically about ourselves. It also strikes me as some kind of weird attempt to avoid saying disabled person, as per fucking usual. "Some parents of children with disabilities talk to SELF-ADVOCATES!" No, dude. Some parents of children with disabilities talk to people with disabilities. It's not some kind of obscure political group and/or cult.
I'm just someone who talks about ableism and happens to be a disabled person. I mean, it's not this totally disconnected "I write about ableism and if you must know I happen to have a disability." I think I notice and care about certain things because I am disabled, and that affects the way my writing is. But my disability doesn't equal my writing (or my advocacy if you want to call it that) and it always bothers me when someone seems to be interested in my writing because I have autism and not because of the content.
Also, as I've said, I just am not a self-advocate. It's a personal problem. People who can self-advocate but can't write a blog have a different set of abilities from me.
For months I have been intending to write about a guy I used to be staff for. Let's call him Ron. I don't know if any of my former coworkers read this blog, but anyone who worked with Ron will know who I'm talking about when I say that his writing is really hard to decipher and would not be served well by the blogging format. I also don't think he could have an abstract conversation about social justice.
But anyone who has worked with Ron has had this experience: you're on break, or you're walking by on your way to support someone else, or you're brushing your teeth in the morning and this really distinctive voice comes out of the stall: "Good morning Amanda. Would you like to wipe my butt and spray deodorant under my arms?"
I always found it hard not to reply: "Fuck yes!" Not because I have a big attachment to wiping people's butts but because someone like Ron is a real hero to me. So many people go through life not asking for what they need. I remember being awed when a blind hallmate walked into my dorm kitchen and said, "Are any of the burners free? Which one? Am I putting the pan on the right one? Okay, can someone give me the spatula?" Something I feel like I'd rather die than do--which, I'm sure, is part of the problem. So many people go through life not asking for what they need that I know the revolution, when it comes, will owe at least as much to brave people like Ron as to speechless but talkative people like me.
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.
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.
2.
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.
3.
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.
4.
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.
5.
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.
But Disabled Staff Person is just hell. Always has been always will be.
2.
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.
3.
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.
4.
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.
5.
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.
20 September, 2010
Let me be played
I think that expectations for staff should be based in service not control. Which is to say you should try to give someone what they want not what you think they need. The obvious response to this is "but some people run out in traffic" and that's definitely true; obviously control is called for in some cases. But I feel like staff should start from a place of trying to serve people and then if the person is actually in danger, you can try to stop that specific situation. I think controlling someone should be something you decide to do in an emergency, not something you're expected to do as a regular part of your job. I think staff should be judged on whether the people they work with are satisfied and happy.
I was reading some of Roia's posts at The Mindful Music Therapist about how she felt really judged by the staff of someone she was a therapist for because her client kept taking her clothes off during therapy sessions. She felt like they thought she wasn't competent because she wasn't able to keep the person from doing that.
This is really depressing to me because I think there are a lot of motives for someone taking their clothes off that would actually reflect well on the staff person/therapist/teacher they did that with. I'm not saying it's good that someone strips, but it could mean that they feel safe, or in my experience it could mean that they want to play a trick on their staff person and see how they respond. I feel like if someone is trying to fuck with you, that's a pretty good sign of the person wanting to relate with you and learn more about you, and also to my mind can indicate that the person is confident about expressing themselves and initiating connection with other people.
So why would anyone be seen as incompetent because a person she was working with did that?
There were some times at camp when I'd be really pissed at someone and then I would realize, "I'm upset because I'm trying to stop a man twice my age from carrying his tape player with him to breakfast. What the fuck is wrong with me?"
The answer is, a lot.
Presumably in Real Life I don't get pissed at people for carrying tape players around. Actually, a person who carries a tape player around sounds like someone I would really like. And also, if I was the parent of an adult (that is, if I was an authority figure but without the policies/rules that someone like a staff person has) I can't imagine getting pissed at my son for wanting to carry around a tape player.
One reason a person might get angry would be if they think another person is angry at them or is trying to upset them. I knew that David generally liked me and we were having a conflict because he wanted to have his tape player, not because he wanted to disagree with me for the sake of disagreeing. So that doesn't explain why I was angry.
I should mention that when I say I was angry, I don't mean that I actually yelled at anyone, but just that I realized I wanted to, and then generally backed down and felt incredibly creepy and messed up. This happened probably three times, fully, but I think there were several campers who I resented on a low level even if I tried to be positive and get along with them on the surface.
I know that staff people can't always have positive feelings toward the people they work with, because some people just don't click with each other. But in retrospect, I think that I resented a lot of people not because of anything they were or did, but because I felt I would be judged for the things they couldn't or didn't do. This was a big problem with people who were slow or spacey or had a very specific way of doing things--I would be thinking, "fuck, we're going to be late for [breakfast/activity/etc.] and people [i.e. staff] are going to think I'm not competent" or "people are going to patronize me because I can't get three people showered in forty minutes"--or, with David, "people are going to think I'm a bad counselor if David is sitting there listening to his tape player instead of participating in activities."
Which is a sign that I'd gotten the impression my environment valued control above service.* When I felt like I would get in trouble or be judged if I couldn't compel my campers to do things a certain way, that caused me to take completely innocent behavior personally. Like lots of people, David often preferred listening to music to interacting with a group--but when I felt like my job entailed getting everyone to interact in a group, wanting to listen to music became something David was doing to me. When he wouldn't participate the way I was expected to be able to get him to, then I felt I looked bad, and ended up thinking things like, "Why does he have to be so selfish? Can't he think about how his behavior affects me?"
Which is really bad because it meant that totally normal and inoffensive things about David became a source of conflict, and made our relationship less positive. Although I think we had a good relationship overall, it would certainly have been better if I hadn't been stressed about how his personality traits were going to affect me. I could certainly have served him better than I did.
*I don't want to sound so critical of the place where I worked. For example, during orientation we were told, "Some campers with autism or OCD may obsess over checking things or may want to do things a certain number of times. We have all the time in the world--if it makes someone feel better, then do stuff a certain number of times." But despite this, I still ended up feeling pressured to control my campers, and I know I wasn't the only one.
I can't let that happen though. I think my goal as a staff person should be to be patronized by other staff. I want people to tell me I'm gullible and a pushover and I'm not being professional. He's not really sick. He's not really in pain. You can't just let him do what he wants all the time! You have to hurry him up. Oh, he tries to get people's attention all the time, just ignore it. Why is he all the way over there? What is he doing? She shouldn't be talking to you like that. He's playing you.
One time at the ABA school I saw a kid tracing squares on the carpet and I reached out to do the same. His teacher said, "Don't do that! You're encouraging him."
Fuck, I hope so.
I was reading some of Roia's posts at The Mindful Music Therapist about how she felt really judged by the staff of someone she was a therapist for because her client kept taking her clothes off during therapy sessions. She felt like they thought she wasn't competent because she wasn't able to keep the person from doing that.
This is really depressing to me because I think there are a lot of motives for someone taking their clothes off that would actually reflect well on the staff person/therapist/teacher they did that with. I'm not saying it's good that someone strips, but it could mean that they feel safe, or in my experience it could mean that they want to play a trick on their staff person and see how they respond. I feel like if someone is trying to fuck with you, that's a pretty good sign of the person wanting to relate with you and learn more about you, and also to my mind can indicate that the person is confident about expressing themselves and initiating connection with other people.
So why would anyone be seen as incompetent because a person she was working with did that?
There were some times at camp when I'd be really pissed at someone and then I would realize, "I'm upset because I'm trying to stop a man twice my age from carrying his tape player with him to breakfast. What the fuck is wrong with me?"
The answer is, a lot.
Presumably in Real Life I don't get pissed at people for carrying tape players around. Actually, a person who carries a tape player around sounds like someone I would really like. And also, if I was the parent of an adult (that is, if I was an authority figure but without the policies/rules that someone like a staff person has) I can't imagine getting pissed at my son for wanting to carry around a tape player.
One reason a person might get angry would be if they think another person is angry at them or is trying to upset them. I knew that David generally liked me and we were having a conflict because he wanted to have his tape player, not because he wanted to disagree with me for the sake of disagreeing. So that doesn't explain why I was angry.
I should mention that when I say I was angry, I don't mean that I actually yelled at anyone, but just that I realized I wanted to, and then generally backed down and felt incredibly creepy and messed up. This happened probably three times, fully, but I think there were several campers who I resented on a low level even if I tried to be positive and get along with them on the surface.
I know that staff people can't always have positive feelings toward the people they work with, because some people just don't click with each other. But in retrospect, I think that I resented a lot of people not because of anything they were or did, but because I felt I would be judged for the things they couldn't or didn't do. This was a big problem with people who were slow or spacey or had a very specific way of doing things--I would be thinking, "fuck, we're going to be late for [breakfast/activity/etc.] and people [i.e. staff] are going to think I'm not competent" or "people are going to patronize me because I can't get three people showered in forty minutes"--or, with David, "people are going to think I'm a bad counselor if David is sitting there listening to his tape player instead of participating in activities."
Which is a sign that I'd gotten the impression my environment valued control above service.* When I felt like I would get in trouble or be judged if I couldn't compel my campers to do things a certain way, that caused me to take completely innocent behavior personally. Like lots of people, David often preferred listening to music to interacting with a group--but when I felt like my job entailed getting everyone to interact in a group, wanting to listen to music became something David was doing to me. When he wouldn't participate the way I was expected to be able to get him to, then I felt I looked bad, and ended up thinking things like, "Why does he have to be so selfish? Can't he think about how his behavior affects me?"
Which is really bad because it meant that totally normal and inoffensive things about David became a source of conflict, and made our relationship less positive. Although I think we had a good relationship overall, it would certainly have been better if I hadn't been stressed about how his personality traits were going to affect me. I could certainly have served him better than I did.
*I don't want to sound so critical of the place where I worked. For example, during orientation we were told, "Some campers with autism or OCD may obsess over checking things or may want to do things a certain number of times. We have all the time in the world--if it makes someone feel better, then do stuff a certain number of times." But despite this, I still ended up feeling pressured to control my campers, and I know I wasn't the only one.
I can't let that happen though. I think my goal as a staff person should be to be patronized by other staff. I want people to tell me I'm gullible and a pushover and I'm not being professional. He's not really sick. He's not really in pain. You can't just let him do what he wants all the time! You have to hurry him up. Oh, he tries to get people's attention all the time, just ignore it. Why is he all the way over there? What is he doing? She shouldn't be talking to you like that. He's playing you.
One time at the ABA school I saw a kid tracing squares on the carpet and I reached out to do the same. His teacher said, "Don't do that! You're encouraging him."
Fuck, I hope so.
12 September, 2010
I want to develop this more but whatever
So one session at camp, two of my campers were named Mark* and David. They were both men in their forties who had Down Syndrome and had lived with their parents all their lives (well, David had just moved to what his parents called "a residence," a few days before camp started).
Mark's mom gave me a long talk about how slow Mark was, and so on. She stage-whispered that she had really spoiled him. But finally, she reassured me that Mark was "a fine young man."
WTF?
David's mom said similar things, I guess, about him being slow, but she didn't make me uncomfortable the way Mark's mom did. And she didn't refer to her middle-aged son as a young man.
This was the session that my brain completely shat out because I was working with people too much like me. I guess that technically David and Mark had similar problems. But when David was getting dressed and he spaced out, it was because he started playing with his shoe or very slowly organizing all his '80s TV show theme song tapes. Mark was just sitting there, staring at nothing and waiting.
David didn't like swimming, and when I asked him if he wanted to go swimming, he would say no. Mark would sort of shrug and smile shyly to himself and eventually say something that sounded like an agreement. Then he wouldn't change into his bathing suit and would eventually tell me that he was going to go swimming tomorrow, not today.
I was really stressed because they were both people who required a lot of focus on my part, but emotionally, David was much easier to take. I mean we had problems about a lot of things, but they were the kind of problems you want to have, if you know what I mean. He wanted to stay up and listen to music instead of going to bed. He wanted to make a speech to the whole camp about the circumstances of Michael Jackson's death. He got pissed because he had a really specific idea of what he wanted his Halloween Dance costume to look like, and we couldn't find clothes that fit his requirements.
Like most people who have been alive for four decades, David had preferences and habits. He was a fan of many TV shows, including M.A.S.H. and Dark Shadows, and he would tell me all about them (at my request). He hated to put his head under the water when he was taking a shower. He needed to sleep with a light on. Some of David's personality traits clashed with mine (I find it really hard to sleep with a light on) but, you know, that's what people are like.
Mark just agreed to everything with a sweet smile. He would very occasionally have bursts of energy where he would make really elaborate jokes I didn't understand. I acted really excited about these things because I wanted to encourage him to express himself more, and in fact I did find this stuff enjoyable, but it didn't happen that much.
I also felt uncomfortable because Mark seemed really detached from reality. For example he seemed to think that if he wrote down a schedule of what activities he thought should happen every day, that's what would actually happen. Because of the fact that he was hard to understand, I feel like I could totally be wrong in how I'm interpreting this--maybe it was just another joke--but I know that I was once a person who was very confused about what was coming in from the outside world, and equally confused about how I could affect it. In retrospect that was a scary time and I'm really glad I understand things better now and feel more in control. So it is upsetting to me to think that maybe Mark was stuck in that kind of experience of not really knowing how to affect his life.
I really, really hated living with Mark. On a day-to-day level, I just was frustrated because it was so hard to do daily living stuff with him like getting dressed and brushing teeth, but much deeper than that was the fact that he seemed so distant and, sometimes, submissive to the point of blankness. He made me incredibly uncomfortable, and I felt guilty for being frustrated with him, and guilty that I couldn't help him.
I complained to other counselors about the fact that Mark's mom called him a fine young man. If he'd lived with someone who thought he was a child, that could be why he hadn't developed the strong personality that David had. "No," another counselor replied, "it makes sense for her to say that. They are children. Especially people with Down Syndrome--their faces look so young. How old do you think my camper Josh is?" I guessed that Josh was twenty and the other counselor replied, "He's thirty," as if that proved something. I think he also told me not to be so judgmental of Mark's parents.
However, if Mark was a child, I wasn't clear on why he was writing letters to women asking them to "sleep in my bed please," sneaking into my bed when I was out, showing me this picture in the middle of the night [NOT SAFE FOR WORK NOT SAFE FOR WORK and imagine what it's like to be shown that by someone you've just met when you are half asleep], telling me I had nice legs, trying to kiss female counselors and campers, and other stuff that I don't want to talk about here. All this really freaked me out. Mark was not the only camper who ever acted like that, but there's a difference between someone who's very outgoing, and sometimes crosses the line into sexually inappropriate behavior, and someone who rarely initiates any contact with other people except when they are sexually harassing them. It made me scared of being around Mark--not necessarily scared about what he might say or do, but just scared about the way he was, and feeling like I was failing him because I couldn't understand him or connect with him.
Mark's mom was the only parent or guardian who ever tried to give me a tip when she picked him up from camp. We weren't supposed to take tips, and maybe there were one or two campers I would have taken a tip for, but I gave the money back without hesitating. I didn't feel like I had done a good job with Mark. I felt like I'd done a really shitty job. Mark's mom got mad at me and told me that "the girl last year took it--why won't you?" I tried to say that I already got a paycheck, and I was just doing my job. Finally Mark's mom gave up, got in the car with him and his dad, and said, "Well, I'll just give it to charity then."
"You should give it to something Mark likes," I mumbled as she drove away.
Mark's mom gave me a long talk about how slow Mark was, and so on. She stage-whispered that she had really spoiled him. But finally, she reassured me that Mark was "a fine young man."
WTF?
David's mom said similar things, I guess, about him being slow, but she didn't make me uncomfortable the way Mark's mom did. And she didn't refer to her middle-aged son as a young man.
This was the session that my brain completely shat out because I was working with people too much like me. I guess that technically David and Mark had similar problems. But when David was getting dressed and he spaced out, it was because he started playing with his shoe or very slowly organizing all his '80s TV show theme song tapes. Mark was just sitting there, staring at nothing and waiting.
David didn't like swimming, and when I asked him if he wanted to go swimming, he would say no. Mark would sort of shrug and smile shyly to himself and eventually say something that sounded like an agreement. Then he wouldn't change into his bathing suit and would eventually tell me that he was going to go swimming tomorrow, not today.
I was really stressed because they were both people who required a lot of focus on my part, but emotionally, David was much easier to take. I mean we had problems about a lot of things, but they were the kind of problems you want to have, if you know what I mean. He wanted to stay up and listen to music instead of going to bed. He wanted to make a speech to the whole camp about the circumstances of Michael Jackson's death. He got pissed because he had a really specific idea of what he wanted his Halloween Dance costume to look like, and we couldn't find clothes that fit his requirements.
Like most people who have been alive for four decades, David had preferences and habits. He was a fan of many TV shows, including M.A.S.H. and Dark Shadows, and he would tell me all about them (at my request). He hated to put his head under the water when he was taking a shower. He needed to sleep with a light on. Some of David's personality traits clashed with mine (I find it really hard to sleep with a light on) but, you know, that's what people are like.
Mark just agreed to everything with a sweet smile. He would very occasionally have bursts of energy where he would make really elaborate jokes I didn't understand. I acted really excited about these things because I wanted to encourage him to express himself more, and in fact I did find this stuff enjoyable, but it didn't happen that much.
I also felt uncomfortable because Mark seemed really detached from reality. For example he seemed to think that if he wrote down a schedule of what activities he thought should happen every day, that's what would actually happen. Because of the fact that he was hard to understand, I feel like I could totally be wrong in how I'm interpreting this--maybe it was just another joke--but I know that I was once a person who was very confused about what was coming in from the outside world, and equally confused about how I could affect it. In retrospect that was a scary time and I'm really glad I understand things better now and feel more in control. So it is upsetting to me to think that maybe Mark was stuck in that kind of experience of not really knowing how to affect his life.
I really, really hated living with Mark. On a day-to-day level, I just was frustrated because it was so hard to do daily living stuff with him like getting dressed and brushing teeth, but much deeper than that was the fact that he seemed so distant and, sometimes, submissive to the point of blankness. He made me incredibly uncomfortable, and I felt guilty for being frustrated with him, and guilty that I couldn't help him.
I complained to other counselors about the fact that Mark's mom called him a fine young man. If he'd lived with someone who thought he was a child, that could be why he hadn't developed the strong personality that David had. "No," another counselor replied, "it makes sense for her to say that. They are children. Especially people with Down Syndrome--their faces look so young. How old do you think my camper Josh is?" I guessed that Josh was twenty and the other counselor replied, "He's thirty," as if that proved something. I think he also told me not to be so judgmental of Mark's parents.
However, if Mark was a child, I wasn't clear on why he was writing letters to women asking them to "sleep in my bed please," sneaking into my bed when I was out, showing me this picture in the middle of the night [NOT SAFE FOR WORK NOT SAFE FOR WORK and imagine what it's like to be shown that by someone you've just met when you are half asleep], telling me I had nice legs, trying to kiss female counselors and campers, and other stuff that I don't want to talk about here. All this really freaked me out. Mark was not the only camper who ever acted like that, but there's a difference between someone who's very outgoing, and sometimes crosses the line into sexually inappropriate behavior, and someone who rarely initiates any contact with other people except when they are sexually harassing them. It made me scared of being around Mark--not necessarily scared about what he might say or do, but just scared about the way he was, and feeling like I was failing him because I couldn't understand him or connect with him.
Mark's mom was the only parent or guardian who ever tried to give me a tip when she picked him up from camp. We weren't supposed to take tips, and maybe there were one or two campers I would have taken a tip for, but I gave the money back without hesitating. I didn't feel like I had done a good job with Mark. I felt like I'd done a really shitty job. Mark's mom got mad at me and told me that "the girl last year took it--why won't you?" I tried to say that I already got a paycheck, and I was just doing my job. Finally Mark's mom gave up, got in the car with him and his dad, and said, "Well, I'll just give it to charity then."
"You should give it to something Mark likes," I mumbled as she drove away.
03 September, 2010
I put this on my tumblr and it's my facebook default, but I just want everyone to see the best picture in the world (taken by Janet's counselor Kris):
I don't miss dial-up and never sleeping but I do miss camp in my own way. Mostly I miss looking up from dinner to realize that Janet was picking her nose with her tongue. And having her pour a cup of water on my head and tell me I was "gross" when I wasn't doing anything.
I don't miss dial-up and never sleeping but I do miss camp in my own way. Mostly I miss looking up from dinner to realize that Janet was picking her nose with her tongue. And having her pour a cup of water on my head and tell me I was "gross" when I wasn't doing anything.
17 July, 2010
some brief win
(also I'm up to my neck in spam comments, can anybody help me?)
On the last night of this session, I was walking back from the last activity with my cabin, which consisted of me, another counselor, and three campers. I was walking behind the others with one camper, and when we got into the cabin my co-counselor was telling another camper, who is 14 and has ASD, "Okay, I'll leave you alone, but if you want to talk to me, I'm here." The camper was lying on his bed with his face against the pillow. Apparently he had stopped talking altogether on the walk back, and had refused to answer questions about what was wrong.
Eventually he got up and went to the bathroom to get ready for bed. I went into the bathroom and said, "Hi Edward."
"Hey," he said from a nearby stall.
"How's it going?"
"Okay."
"Are you mad at us?"
"...Maybe."
"Do you want to tell me why you're mad at us?"
I stood around and messed with my hair in the mirror for about three minutes. Finally he said, "The answer to your question is no."
"Well, if you don't tell us why, we might just keep doing the thing you're mad at us for. If you tell us what it is, we can stop doing it so you won't be mad anymore."
"It's more like I'm mad at my mom and dad for sending me to this camp."
"What's wrong with camp? Is it boring?"
"Why wouldn't it be?"
"Well, I feel like we try to work hard and make things fun for you guys. I have fun. What don't you like about camp?"
"I'll tell you when we get back to the cabin."
"But there are other people in the cabin. There's no one here."
"I'll tell you in the cabin."
I left the bathroom and went back to the cabin. While I was talking to our other campers I wondered what the camper in the bathroom would say about why he didn't like camp. To be honest I had sort of wondered what he thought about being at this camp. He is a passing person, and he was the only camper this session who didn't have an intellectual disability, as well as the youngest camper and one of the few who was under eighteen. As far as I know, he had never been to a disability camp before; he mostly attends Christian camps. I had wondered if he knew that this was a disability camp before he got here.
I didn't know if he had spent much time around visibly disabled people, or disabled adults. I do feel incredibly positive about the fact that this is a camp for DD people of all ages and ability levels, because I think a lot of DD kids don't ever see DD adults in their daily lives. A lot of the time Edward seemed to be following the lead of counselors who would say positive things about older campers ("there goes Bruce, he's so awesome," and so on). But we had just spent a lot of time with older campers and I was wondering if Edward had suddenly become upset about being at "this kind of camp."
I figured I was more equipped to discuss this stuff than any other counselor, since I'm actually disabled, so I headed back to the bathroom and asked him again what he didn't like about camp.
He answered me at once, but very slowly: "Well, the thing is...sometimes I don't like to admit what I actually am thinking...So when I said that I don't like this camp, I actually meant that I do like this camp."
"You're mad because you feel sad about leaving tomorrow?"
"Yeah."
Never mind, apparently he enjoys being at "this kind of camp" very much. The next day he kept saying he didn't know if he was going to come back.
"How come?"
"Well, I don't know if my parents are going to sign me up for next year."
"Why not?"
"Because maybe they won't be sure about whether I liked it here or not."
"Well, you could tell them you like it here, you know."
"Yeah."
(By the time he got in his sister's car to go home, he informed us that he was coming back next year.)
On the last night of this session, I was walking back from the last activity with my cabin, which consisted of me, another counselor, and three campers. I was walking behind the others with one camper, and when we got into the cabin my co-counselor was telling another camper, who is 14 and has ASD, "Okay, I'll leave you alone, but if you want to talk to me, I'm here." The camper was lying on his bed with his face against the pillow. Apparently he had stopped talking altogether on the walk back, and had refused to answer questions about what was wrong.
Eventually he got up and went to the bathroom to get ready for bed. I went into the bathroom and said, "Hi Edward."
"Hey," he said from a nearby stall.
"How's it going?"
"Okay."
"Are you mad at us?"
"...Maybe."
"Do you want to tell me why you're mad at us?"
I stood around and messed with my hair in the mirror for about three minutes. Finally he said, "The answer to your question is no."
"Well, if you don't tell us why, we might just keep doing the thing you're mad at us for. If you tell us what it is, we can stop doing it so you won't be mad anymore."
"It's more like I'm mad at my mom and dad for sending me to this camp."
"What's wrong with camp? Is it boring?"
"Why wouldn't it be?"
"Well, I feel like we try to work hard and make things fun for you guys. I have fun. What don't you like about camp?"
"I'll tell you when we get back to the cabin."
"But there are other people in the cabin. There's no one here."
"I'll tell you in the cabin."
I left the bathroom and went back to the cabin. While I was talking to our other campers I wondered what the camper in the bathroom would say about why he didn't like camp. To be honest I had sort of wondered what he thought about being at this camp. He is a passing person, and he was the only camper this session who didn't have an intellectual disability, as well as the youngest camper and one of the few who was under eighteen. As far as I know, he had never been to a disability camp before; he mostly attends Christian camps. I had wondered if he knew that this was a disability camp before he got here.
I didn't know if he had spent much time around visibly disabled people, or disabled adults. I do feel incredibly positive about the fact that this is a camp for DD people of all ages and ability levels, because I think a lot of DD kids don't ever see DD adults in their daily lives. A lot of the time Edward seemed to be following the lead of counselors who would say positive things about older campers ("there goes Bruce, he's so awesome," and so on). But we had just spent a lot of time with older campers and I was wondering if Edward had suddenly become upset about being at "this kind of camp."
I figured I was more equipped to discuss this stuff than any other counselor, since I'm actually disabled, so I headed back to the bathroom and asked him again what he didn't like about camp.
He answered me at once, but very slowly: "Well, the thing is...sometimes I don't like to admit what I actually am thinking...So when I said that I don't like this camp, I actually meant that I do like this camp."
"You're mad because you feel sad about leaving tomorrow?"
"Yeah."
Never mind, apparently he enjoys being at "this kind of camp" very much. The next day he kept saying he didn't know if he was going to come back.
"How come?"
"Well, I don't know if my parents are going to sign me up for next year."
"Why not?"
"Because maybe they won't be sure about whether I liked it here or not."
"Well, you could tell them you like it here, you know."
"Yeah."
(By the time he got in his sister's car to go home, he informed us that he was coming back next year.)
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