09 August, 2011

So I'm back from working at camp and I have been feeling more and more that I don't want to be staff for people with DDs--I was going to say more on this later, but why don't I just tell you about it now. I wouldn't pass up an opportunity to work with people with DDs if it fell into my lap (I wouldn't pass up any job if it fell into my lap obviously), and might volunteer if I can find any easy/convenient way to do it. I want to return to camp every summer for as long as I can, because there are some campers I consider friends and can't have a long-distance friendship with because they can't write/read/talk on the phone. But I don't particularly aspire to have another job with that population. What I'm thinking right now is that I'd like to do personal care stuff in a hospital, which might include working for some people with DDs, but wouldn't primarily be defined that way. It is the definition that really gets to me.

I became seriously interested in working with people with DDs when I was about 19 (I'm 22 now). At that point I didn't think of myself as disabled or really even as being on the autism spectrum, even though I judged myself much more in the frame of my not-really-autism than I do now. I just knew that I felt safer and happier with people who had DDs, regretted the lack of opportunity to be around them when I was growing up, and couldn't handle the stress of working with and for "normal" people.

Ultimately it was a way of cheating. When I went into spaces where I was in a staff role, I was categorized as non-disabled by other staff; I could do or say pretty much anything, sometimes including telling people I had a disability and what it was, and it would never stick long enough for me to be categorized as disabled. People would forget or ignore anything that muddled the division between disabled people (campers/students/consumers) and non-disabled people (staff). People I told about my jobs would always tell me how "special" and "patient" it was for me to work with people who had DDs. So I got to be someone who was officially, unquestionably non-disabled, who was even an especially nice non-disabled person, while being around disabled people which was what I really needed.

I think through the positive presence both of people I've met through anti-ableism online and people I've been staff for, I've become someone who can no longer be so disconnected from the fact that I'm disabled. When I'm assumed to be non-disabled by other staff I feel erased; not just by definition, but also because anti-ableism and disabled friends are a big part of my life so it can be difficult to even talk to people when that isn't recognized. When other staff say ableist things, I take it personally, and the gulf between me and the staff people I actually like suddenly becomes enormous because they don't--even if they see a problem with it, it isn't about people like them.

Now that I'm no longer hiding from myself I find this terrifying and depressing to be around.

There was an in-between period where I felt guilty about staff work--putting myself in a situation that was more comfortable for me as a disabled person but also making it much easier for myself to access passing privilege. It felt like I was doing it at the expense of the "clients" or officially disabled people or whatever you want to call them, since I was trying to get the benefit of knowing them while also keeping very clear separation from them. But at some point this conflict disappeared. I don't feel separate from them, or want to be.

Because of that my old ambitions can never really work out.


  1. I think you got the right idea, though maybe it's not my place to say any of this.

    I do want to say a couple things though. One is that I get the impression that you had a really positive impact on the people you were serving relative to some other people. You did this while being pretty upfront (at least to yourself and on here) about having selfish motivations for being there. These things are not a coincidence. It is not a coincidence that you can do more good than an "altruistic" person who thinks they can get money for being a "good person." This is one part of yourself that I think you have a right to be glad about.

    Second is, don't give up on finding better spaces. Because I honestly believe they can exist, even in this climate. Spaces where disabled people are not seen as faulty, spaces where having a similar disability is seen as a positive thing, spaces where people can just exist as the sort of person they are. I also think you have the potential to play a role in creating these spaces, though probably not by yourself (I certianly don't blame you if you don't do this). Maybe not for money, either. Money messes things up, so either you deal with that influence or divorce yourself from it, maybe in some of the ways you are trying to.

    Again I apologize if I shouldn't be saying this. I definitely don't have a right to dictate/judge this stuff, but at the same time I can't help feeling encouraged by it even though that may ultimately be a way of judging/dictating.

  2. Wow I graduated in Abnormal Psychology in 2003. Initially I wanted to work with people with mental disorders. After graduation I felt I couldn't deal with this 'separation' between Them and Me.. I just felt the line between me and them was thin/non-existent so how could I pretend to be on of staff while I was depressed and felt so disconnected myself.

    I only found out about ASD (or whatever you want to call it)in 2011. So crap, really.. I studied this stuff and it took me part of a lifetime to find out I was having a disorder I could never get rid of. Irony :P

    PS just found you via Youtube. You have an awful lot to say about everything. It makes my mind spin. I kinda think about my own life mostly, and I want to find practical solutions to everyday problems, I try not to thing too much about labels and theory. Eventhough, lack of life events does push you towards theoretic reasoning instead of just going out and do some real stuff :P