14 March, 2012


Say it with me, I work in a nursing home. And while I don't consider nursing homes for old people to be the same as institutions for young PWDs (there is a big difference between going into a setting like this at the end of your life, and doing so as a young person often at the cost of pursuing the things that most people your age get to pursue), I do think I am learning about institutions and why they just aren't the best thing for anyone--at least not with staff ratios that are so badly suited for people's support needs.

This is obvious, but institutions create "behaviors." They create people who are demanding or mean or angry. A person who likes to go to the bathroom frequently isn't a bad person if they can go to the bathroom independently or if they have an aide at their house whose job is to take them to the bathroom whenever they want. But if the person shares an aide with 20 other people, she becomes "the person who always wants to go the bathroom and doesn't even fucking do anything in there" because of the effect that her quite innocent and harmless personality has on an already overwhelmed aide.

And the big thing is, some people don't want to sleep at night. They want to get up. They want help getting up and going somewhere. I clearly cannot provide this help. They get mad. I start thinking to myself, "why won't they just chill out and watch TV in bed," when the person wants something totally normal that I would probably be asking for sometimes if I lived in a nursing home.

There are various ways of dealing with this situation, but recently I was introduced to the idea of pretending that someone is about to die so they can get hospice services. This means that the nearby hospital associated with us will send an aide just for that resident, to stay with them and do everything they want. I guess when you're about to die you deserve to have all your whims followed even when you have support needs, whereas other people with support needs just have to suck it up and take what help people have time to give them.

I'm not saying this is exactly a lie since we probably do have to convince people that the person could die in 6 months. But it's not like this happens to everyone who might theoretically die in 6 months, because some people don't care or wouldn't get that much out of having their own aide. It happens to people who need/want way more support than we can give them. They are the people who are suddenly like, "you guys he's about to die, he needs to be on hospice!"

This is probably not that interesting but I just thought it was kind of a funny and not very subtle way of dealing with shortcomings of institutions.


  1. I think one of the things I mentioned to you before you took this job was my sister's experience of being "understaffed" and having to essentially choose between who she thought needed help the most (I think I also mentioned that you might resent someone who you decided didn't fall into that category). This is a pretty common experience.

    More staff isn't necessarily better, though, because it generally means less control over your life. Of course disabled people are made to choose between control over their lives and their well being every day and most of us have probably chosen "loss of control" at some point, at least in the short term. But if there were more staff it would bring a different set of problems.

    I also don't agree that there is a big difference when it is for older people. What children "usually" get to do is not the issue. I'd imagine that if you asked someone to make a list of the kinds of things that are important for young people to be able to do, they will mainly be things a large portion of the world has been going without. The problem with institutions is segregation from wider society and loss of control over your life, which is not any better if you are 80 years old. By keeping people out of the community and by failing to give them the available ways to interact with people, they are missing out important aspects of their lives, things that do not diminish in importance with age. Old people can still learn and "do things," despite what people tend to say.

  2. "More staff isn't necessarily better, though, because it generally means less control over your life." This depends on whether a staff person's job is about service or control (I think I once wrote a post outlining these two kinds of jobs and calling it being a staff person or being an aide). Having someone around to support you in whatever you decide you want to do leads to more control, not less, especially if for example you need help moving around.

    I am overdue writing this, but putting together every situation where I've worked with kids or PWDs (including people with age-related disabilities, i.e. now) I've noticed that control staff : euphemism ratios tend to be very high while service aides: euphemism ratios tend to be low. Like people with autism have a bunch of staff watching them to make sure they don't say the wrong thing, but people who physically need someone to keep them comfortable have to share that person with 10-20 other people with the same needs. Which definitely indicates what's supposed to be the priority re kids and PWDs.

  3. "This depends on whether a staff person's job is about service or control"

    It really doesn't though. The main problem with that is that it's not like people just do one of the two or that there's necessarily a separation in people's minds. "Service" people still get pushed into getting people to behave in certain ways. I think you've talked about this in your work and Amanda Baggs has talked about this kind of issue even with the assistance she gets one on one in her home. (I also remember commenting that many nurses etc don't even see themselves as "service" people as much maintenance people. The result of this is that sometimes it's not even "service and control" but "maintenance and control," which means being treated pretty much terribly to varying degrees.)

    Anyway, saying "but some people have more control if they have assistance" is something of a nonsequitar because if someone can't move around because they can't move their arms and legs, who is controlling them? That's a different kind of issue than being limited by the authority of other people. It can be a bigger issue but it's not always, hence my stipulation that "More staff isn't necessarily better." Plus there is the issue that it could be addressed in better ways than by simply flooding the nursing homes etc around the city/state/country/world that currently exist with more staff.

    The second paragraph of your comment is interesting though and wasn't something I was aware of.

  4. I mean is that a non sequitur? I guess there are different reasons that a person wouldn't have control but it can be because of lack of needed support, not necessarily because of someone trying to control them--and the original idea of this post was more about people not being able to get as much support as they need for what they want to do. I don't know how the subject changed enough that talking about this is a non sequitur.

    Also as you may have experienced, denying someone support can be a way of trying to control them as well.

    "Plus there is the issue that it could be addressed in better ways than by simply flooding the nursing homes etc around the city/state/country/world that currently exist with more staff."

    Oh Pancho, you and your strawmen.

  5. I am not going get into some big thing about who said what, but the problem with adding more staff is that there are more people who have authority over you and can force you to do things or into various situations. You were taking an unrelated meaning of "control" and talking about it like it's the same thing as what I mentioned. The other meaning is relevant to the original post, but it's not relevant (it does not follow) as a way of discounting the idea in my comment. That doesn't mean it's not relevant to anything.

    The other thing also isn't a strawman because I wasn't claiming you had just made that argument.

    I am probably not going to say anything else now because I am unlikely to say anything useful past this point.

  6. I just hope everyone at your nursing home has the same beliefs and morals as you. Its nice to hear nurses who appreciate the elderly and want to take great care of them. thanks!