03 May, 2012

    Sorry to just write about my job. But I have to admit I don’t have time to think about being disabled, but I am the enemy and I guess writing about my time as the enemy can possibly be educational to others. I feel really screwed as a support worker who wants to do ethical work but also is a non-driver, because the less institutional a setting is, the more likely they are to only hire people who drive. But I am still finding myself thinking that when I move in a few months, I’ll do anything to work somewhere that’s not an institution, I don’t care what it takes.

    Caregiver burnout is seriously the weirdest idea I’ve ever heard of, since I’ve never in my life had a staff job where the people I supported (all supposedly “heavy” populations to work with) have actually been difficult. I mean, there has been a very small minority of people who are tough to work with for different reasons, but probably less than in the general population. 99% of stress in my staff jobs has always come from being asked to perform contradictory tasks, or being asked to do things that I think are wrong. The stress always comes from cutting corners and compromising, being afraid that the thing I skipped to get something else done will turn out to be really important, or being guilty because either I did something that I know was wrong, or I did something that someone else might think is wrong. If I’m stressed about something related to the people I support, it is usually because I know I’m starting to see them with less ordinary human compassion. They’re becoming pipes.

    But really I just want to tell you about some advice I got the other week.


    I used to work 8-hour shifts (11 pm to 7 am). I’m really glad I started out that way, because a night shift is definitely the most mellow it ever gets at the place I work. For the last hour or two of the shift you are helping people get dressed and showered, but until then, the job basically consists of helping someone if they wake up and want to go to the bathroom, and doing things like emptying catheter bags which you can do on your own schedule.

    Last month I started working 12-hour shifts (7 pm to 7 am) which means that the first four hours of my shift are about ten times busier than I’m used to. If the person who worked 3 pm to 7 pm got a fair amount of work done, I have to put maybe 10 people in bed in 3 or 4 hours, which is fine. Other times I have 14 people, which doesn’t work out for me so well.

    Two weeks ago, one of the night nurses showed up for work at 11 and noticed that I still had one resident left to put in bed. The nurse--let’s call her Anna--is a few years older than me and maybe six years ago, before she was a nurse, she worked here as an aide. It was her first job as an aide, just like me.

    Anna approached me later that night and said, “I noticed that someone was still up when I got here. You should really have everyone in bed by ten.”

    I tried to say that I’ve had trouble putting people to bed fast because I don’t have much experience working with these residents in the daytime and I don’t know what kind of lifts they need, or even things like if they have dentures. I tried to ask for a guideline on how many residents I should put to bed in an hour.

    Instead she suggested that I start at the top of the hall and put the residents of the first room to bed first. If I continued in that order, she said, I would be able to get things done faster. She started to do an impression of how she used to talk to residents when she first started working: “‘Hi, I’m Anna, I’ll be your aide tonight. Would you like to go to bed? Well, what time would you like to go to bed? Okay, I’ll come back then.’ And I would be on my hall at 10:30 wondering why everyone else was finished. You have to have a way of doing things and do it in that order.”

    “I guess some people will always say they don’t want to go to bed, if you ask them,” I said.

    “That’s right. And other people will be sitting in their doors calling, ‘Honey, put me to bed.’ But you have a lot to do, and they understand that. So just get in there and start at the top of the hall and go to the end. I bet by the time I see you next week you’ll be a pro.”

    I have my own thoughts about the content of what she was saying, but my main reaction in the moment was that it was nice of Anna to offer me advice, and that she had done a good job presenting that advice in a way that didn’t make me feel like there was something wrong with me. When she came back on the hall later, I thanked her for what she had said.

    Now she said, “I know it’s hard, because in your aide class, they tell you to ask everyone what they want. And you’re a sweet person--don’t change that--but you have a lot to do.”


    Despite all the obviously messed up things about support work it is hard for me to imagine doing a different kind of work, because the people I end up supporting almost always turn out to be really great. Or maybe it’s just the kind of relationship fostered by that work, that I end up seeing the best side of people. Either way it is a job where all the big frustrations end up being totally made up for by mundane details.

    The more I like my residents though the more I just wish I was working for them. I want to do what they want, not put them where someone else decided they should be at a certain time. This is such an obvious aspect of institutional settings that I wouldn’t even say it is what this post is about, although if you have not worked or lived in a nursing home, I guess now you know more about it. (This blog explains things a lot better than I could.)

    Anyway, what struck me about Anna’s advice isn’t that you’re not really supposed to ask people what they want. I have been learning that since the first day my State Tested Nurse Aide class ventured out of our classroom and into clinicals at a nearby nursing home. At the end of clinicals, my classmates talked while we were filling out the sheet of skills we had practiced--brushing teeth, changing diapers, passing trays. Everyone noticed that unlike our role-plays in class, which we always started by asking the imaginary resident what she wanted, in clinicals we were expected to do as many skills as we could unless the resident actually yelled at us and fought us (and even then we were supposed to give it a good try.)

    The thing is though that when my classmates noticed this, they just thought it was the difference between official standards and the way things work in real life, like it's easier not to lift people in the way that is officially supposed to be better for your back. They weren’t upset that we were supposed to be coercing people into doing things they didn’t want.

    This is also what struck me about what Anna said to me. She felt like if I was just exposed to the idea of not asking people what they want, I could just start doing it. She assumed that I was asking people what they wanted because it’s what I had learned in class, or because I was “sweet”--that it was a habit that came with my temperament, like saying please and thank you. It didn’t occur to her that I might be making an informed choice because I thought it was the right thing to do.

    I didn’t finish How Indistinguishability Got Its Groove Back and I don’t know if I will.  But this kind of ties into it. Basically I feel that most people who work with vulnerable populations, and/or people with disabilities, don’t seem to come into their job with a sense of ethics or power dynamics or the potential for abuse, and no one works to instill it in them. This doesn’t mean that most people in these jobs are awful people or that they commit a lot of abuse, but I think that there would be a lot less abuse and people with disabilities would have better lives if someone just thought these ideas were important.


  1. I really hope you do finish How Indistinguishability Got Its Groove Back, or at least come up with a suitable replacement...your writing is pretty high up on my list of favorites with regards to disability (as I think you're already aware). And the really radical (i.e. "of roots") writing that I find on blogs has always been most helpful for me personally, politically, and ethically....I don't know what I'm saying but yeah.

    1. I guess that's why I've been writing less, I just don't feel like I have much more radical to say. I don't want to become someone who repeats myself or splits hairs just so I can keep updating? But I'm glad you feel that way.

  2. I am so glad that you are still writing and advocating. I am also very pleased that all of your archives are here, as I found you first on YouTube while searching for something else and I am now looking forward to reading all your past posts regarding ASD and life in general... really enjoy your writing.

  3. I actually would find you writing about your job, and how you put your ethics into practice working with other disabled people, very valuable.

    (I also do not see you as an enemy, now that you are Staff --- I know you probably meant that as a joke, but my favorite jokes are the jokes that are true, so I do kind of worry that you really see it that way --- I see you as a really valuable ally to your clients in a way that other staff, who might be good-hearted but just don't have the experiences, or the political awareness, that you do couldn't be.)

  4. It wasn't a joke and thanks. I appreciate you being interested because I feel like a lot of people don't really care especially now that I'm not working with people with DDs and that kind of bugs me. Maybe for some good principled reason but probably mostly because it's annoying to be learning/thinking a lot and feeling like no one would want to read it.

  5. Are you calling ASD a disability? I believe that if you think of it in those terms you are bound to couch your life in negativity.

    Definitely willing to chat more if you want. (Disclaimer not a therapist, just willing to share my experience).

    1. ASD is a disability, if you think disabilities are negative things you should apologize to people with disabilities that are considered objective like paraplegia.