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.

4 comments:

  1. I guess they think of them as children because they're developmentally delayed, but I can see how it's also an insulting way to put it.

    And besides, it ignores the fact that they're physically on an adult level and have all the adult...urges.

    I think Mark would have freaked me out as well. I wonder if nobody ever tried to tell him that sexually harassing people was inappropriate? Seems unlikely, but who knows.

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  2. I think that people who think middle-aged men are children shouldn't be allowed to work with them, since they obviously have no conception of who they are dealing with. Also, what does it prove if someone looks younger or older than they are? A lot of non-disabled people do as well.

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  3. Read your "affection post" back in March, and seems this is a bit of a follow-up.

    The affectionate disability issues post

    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.

    Do you think the sexual stuff might be the only time when he feels real, connected, a man?

    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.

    There is a really good book on mental health. Not really sure whether I would put it here, as it might be objectifying.

    And I think you had referred to "working with people like you" in an earlier blog post this month. Especially the part about showering.

    September 3: Ambitions

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