03 September, 2010


I know I don't really need to decide now (or ever, I can bounce around) but I think a lot about job stuff after college and what kind of things I want to do.

I think something I've been realizing is that I may not be equipped to be support staff for adults who have ID/ASD. This occurred to me during the third session of camp when my brain stopped dead after micromanaging three people's showers in a row. I am a person who is mentally able to shower, but it's only been in the past few years that I've been able to do it well, without becoming spaced or having to use timers and write directions on myself. Even though I can do it now, I guess the foundations are still shaky enough that I have a limit, and don't have enough of that type of function to spare on other people who have similar problems. I'm just not able to do that kind of job long-term, and that makes me angry and sad.

An obvious idea would be to work in a school because there would be a fixed schedule and I could help people in academic areas where I'm not impaired. But I guess what bothers me about that is I feel like so many (non-disabled) people get excited about "special needs" kids because they think they can just waltz in and make the kids not be disabled anymore, especially in the case of autism. Or because they think that kids with disabilities are really cute and interesting--while being creeped out by disability in adults. These kinds of attitudes have always made me want to work with adults and not kids or teenagers because I feel like adults with developmental disabilities are just erased and devalued and the people they end up having as staff are not serious about what they do.

At the same time, the fact that most people who work in special ed are all Nondisabled Person's Burden about it isn't really a good reason not to work in special ed. And my decision to work with adults or kids doesn't affect the stigma against adults so "I have to work with adults" is kind of a dumb principle to have.

I'd really like to end up working with people who have "multiple disabilities," which I think is a really weird term. Last spring I got to spend some time in a class of preteens and teenagers some of whom had that label, and I felt like there wasn't enough of an organized attempt to engage them and develop communication. I mean, I'm not denying that a lot of people with the label probably really do have mind disabilities as well as physical ones, but I just think it's ridiculous to act like you can assess someone's intelligence who doesn't have a communication system. If I had the choice I would really want to do nothing but work on AAC with people all day, because it's so important and I think I'd be good at it, but I think that's sort of a big deal job that you have to go to grad school for and make your own schedule which doesn't seem workable for me.

Obviously I write a lot about being a Disabled Staff Person but it's usually more about identity and about having movement and communication things in common with clients/students that the other staff don't have, and how that is a weird experience. But the other part is that sometimes I wonder if I just am too disabled to be much good to other disabled people. When the person I'm supposed to be supporting doesn't need much more help than I need, or needs kinds of help I wish I could get, it ends up being sort of disorienting and occasionally making me jealous since I'm "high-functioning" enough to be expected to direct myself in daily living when I sometimes barely can.

In Can the World Afford Autistic Spectrum Disorder?, Digby Tantum tries to say that people with ASD are more wise, or creative, or something, because we figure out pretty early on that there are some things we want that we will never be able to have. And sometimes I do manage to convince myself that it's some kind of spiritual gift, but, well, usually not.


  1. I don't know what exists in your area in terms of those kinds of organisations, but one thing worth looking into could be working for a Centre for Independent Living or a similar "user-led" disabled people's organisation. Many of these have a policy of only employing disabled people and they are (or should be) founded on the social model of disability and usually a large part of their role is supporting people to get the kind of PA support, assistive technology (wheelchairs, AAC, etc), accessible housing, etc that they need.

  2. I love the tag "staff infection". Hee!

    Obviously, I can't tell if you're good at working with disabled people or not, but I would think that you'd have a valuable perspective to impart, being a disabled person yourself. Like maybe you'd be able to figure out better what they needed or how they could cope in ways a non-disabled person wouldn't. But I don't really know.

    I'm kind of fascinated by what you said about how you used to have trouble showering. What part of showering did you have trouble with, and did you just take baths all the time before you sorted it out? I hope I don't seem nosy or weird for asking but I'm just curious. It got me thinking about what kinds of 'normal' things I have a hard time doing or am unable to do, and I wasn't able to think of many except that I have a really hard time giving directions to people even to places where I know how to get to, because it's just really hard for me to translate the knowledge of how to get there in my head to verbal instructions that would make sense to another person. That and I can't snap my fingers. I literally can't snap my fingers; it's weird.

    I think there was more stuff like that for me when I was a kid but one of the nice things about being an adult is that it's so much easier to avoid the things you're bad at. Like having a hard time learning dance moves or being unable to play team sports is completely irrelevant to my life now.

    Sorry for rambling.

  3. thank you Shiva. I will look into that although I guess I thought that centers for independent living mainly focused on people who had physical disabilities only and I really want to work with people who have mind disabilities as well. but I may be wrong.

    the shower thing was twofold:

    1. I thought that I had to actually follow a really specific script of how to take a shower (wash face, wash ears, wash neck, etc.) and because I really carefully washed every part of myself, it took me a pretty long time to take a shower

    2. because a shower is a pretty unstructured event, I tended to just sort of space/become unstuck in time and just stand in the shower lost in thought. A way that I would deal with this (after several years of having trouble) was by coming up with a list of songs to sing in the shower and writing the list on my arm or leg and barreling through my setlist without breaks so I couldn't lose my concentration. Of course I sometimes did just stop singing and space out, but it made things easier, and I also had a timer on the bathroom counter that I could look out at to see how I was doing. I used timers to get dressed and stuff a lot when I was in high school. In college I was self-conscious about using timers and singing but fortunately a lot of this stuff has turned out okay and I've realized that you're not actually supposed to follow the entire Shower Script when you take a shower. And I sort of forgot about timers altogether until I was at camp this summer and had a camper my age, with Down Syndrome, who uses a timer the way I used to. Which was really cool.

    I can't snap my fingers either but I don't know if that's autism-specific. Although we could do a survey maybe. Anyway, I did take showers, they were just very long and disorganized.

  4. ps--also I don't like to put on clothes until I have dried off but I don't like to dry myself off so I used to spend like an hour sitting in a towel after showering, waiting to be dry (which my friend tells me is a really disgusting habit). But I got over this when I was working at camp this summer because it just wasn't possible to do that. Also I had discovered athletic shorts and they were less uncomfortable to put on wet skin than jeans or other kinds of pants.

  5. Is spacing out a lot an autism thing?

    Your thing about using the timer and songs reminds me of how I used to have a really hard time doing my morning routine and picking out my clothes without music playing. It was just harder to get it together somehow without a soundtrack. But that had its own problems, as I'd often have a hard time deciding what music I wanted to listen to as I got ready in the morning.

    I think going from having a boombox to just having an ipod cured me of that though. I need to do a post on music and how it affects me because I think it'll be interesting (well, to me at least).

  6. PS: I don't think sitting in a towel waiting to dry off is disgusting, as long as your towel is clean (resisting the urge to make a Hitchhiker's Guide reference).

  7. I think it's an executive dysfunction thing. Maybe. I don't know. It seems common in people with DD. And if you space out because you are going back to a favorite mental subject, it is an Autistic thing I guess.

    Did you ever read The Man Who Mistook His Wife for a Hat? That guy had trouble with recognizing objects and people--if he really looked at something he was eating, for example, it wouldn't look like food to him and he'd get so confused he wouldn't be able to keep eating at all. But if he sang while he was doing things, he could do them a lot better. I was always sort of struck by that detail and identified with it.

  8. When I was a kid, I couldn't snap my fingers. I'd ask people how to do it, but I couldn't really understand their descriptions of it well enough to do it. Eventually, I kind of figured it out on my own. I still don't know how to whistle, though.

  9. I kinda sorta can whistle, but it sounds horrible and it isn't really proper whistling.

    I remember being in a swimming class at the Y when I was a kid and not knowing how to hold my breath, and the teacher said, 'well you better learn'. Which struck me as idiotic.