31 December, 2012


warning for dehumanization

At camp I made a friend named Zach. His family was friends with the assistant director, so he was hired in a pinch to replace a counselor who left (someone who was paid extra for his years of experience, but regularly talked about how this job was beneath him and he wished he could hit disabled kids). All the other staff knew about Zach before meeting him was that he had no “experience,” his family was Mormon, and he was the oldest of eight siblings.

You probably know where I’m going with this. There was a general idea at camp that people who weren’t “experienced” were going to be blindsided on the first day of camp when they met so many people with developmental disabilities. Every year, a few counselors would quit after a week or two and everyone was very understanding that this was “a difficult job” and they just couldn’t do it. (Of course difficulty is relative--at my last job it was considered normal to work full time while going to school and raising kids, so saying you were stressed by work or something was difficult just seemed ridiculous to most people. But almost everyone at camp was a full-time student at a liberal arts college, so the bar for “I can’t do this” was a lot lower.)

Everyone waited for Zach to express some kind of shock or stress about working with disabled people. He failed to deliver. He had a deer-in-headlights expression that we took for nervousness but it turned out to just be his expression. He was a quiet, gentle guy who talked the same quiet way to everyone, regardless of whether they had a disability or not.

I had swallowed the whole “difficult” idea myself and like everyone else I wondered if Zach could really be as unchallenged by working with people with developmental disabilities as he appeared to be. Was it possible that this wasn’t really a “hard job” that required “special people,” but just a summer camp counselor job like any other?

Zach and I became friends. We ended up sharing a lot of personal information--I usually hold back with people who aren’t bad brains, but he never gave any indication that things I told him about my life were scary or weird. Eventually, I got it together to ask Zach what made him be so chill towards disabled people.

“Well, I helped raise all my siblings,” he said. “No one here is as hard to get along with as a four-year-old. And I’ve gotten used to pretty much every kind of personality there is, so nothing surprises me.”

Now I don’t expect to convince most prospective employers of how special I think Zach is, because for whatever reason, most people’s idea of a good support worker has nothing to do with him (except that they like to hire people who know someone who knows someone).
As far as I can tell, your ability to get hired as a support worker is related to three kinds of meaningless experience: knowing someone who knows someone, having worked with the same specific population, and training/certification. When the third factor is there it overwhelms everything else because it’s often a legal requirement. I’m not saying there is an obvious solution to this but it just sucks that the pool of potential support workers is determined by things that have nothing to do with their aptitude for the job, and that people who could do a great job are not considered.


I already told you about experience, so let me tell you about training. In Ohio I became a State Tested Nurse Aide, meaning I was legally able to work in a nursing home (some home care agencies also will only hire STNAs/CNA/LNAs or whatever they’re called in your state, but as far as I understand this isn’t a legal requirement outside of facilities). It took two weeks to become an STNA. In my class, I mostly learned things I was never required to do or that were the opposite of what actually worked. I also learned things that people will do anything to stop you from doing.

Above everything in the STNA class, there was a strong theme that you should respect the preferences and dignity of the person you’re taking care of. This was something I would have done anyway and it was one of the things that my future coworkers would find the most incompetent and annoying. “I know you’re trying to do what they taught you in class, but you don’t have to,” STNAs and nurses would constantly remind me when they overheard me asking someone what she wanted. I’ve never had so many people call me gentle as an insult. One of the nurses came into a room just to tell me that I didn’t need to close the curtain when toileting someone. I tried to find more discreet ways to be discreet.

(Funny toileting story: one time I was changing a resident’s diaper when my charge nurse, Rachel, stuck her head in. “Amanda! Amanda!” I tried to finish changing him but she just stood there saying, “Amanda, Amanda, come on, I need to tell you something.” Not wanting to leave my resident lying naked, I hastily pulled his sheet up over him and followed my nurse into the hall where she described how she had won a power struggle with a woman who crawled out of bed and asked for help getting back in. “If you can get out, you can get in” was Rachel’s answer, and she waited until the resident dragged herself back into bed. After expressing sufficient awe at this great story--which I guess was intended to correct my “gentleness”--I was finally allowed to go put a diaper on my resident.)

I dimly remember from STNA class that requiring aides to go through training and pass a test was intended to make long term care facilities safer. But training people to say they’re doing things that they are heavily discouraged from doing is not really going to improve the situation for anyone.

Maybe it comes down to official, measurable harm and liability. At my nursing home everyone was constantly trying to reduce the number of falls, which they did by putting gym mats next to residents’ beds. If a person fell or crawled out of bed onto a mat, it wasn’t considered a big enough change of altitude to be a fall. You just put the person back in bed (or you didn’t, if you were Rachel) and no one had to chart it. Even if there was only one aide to thirty residents, it was rare for a mobility impaired person to be able to crawl out of bed and across the entire mat before anyone heard her alarm. When someone did get that far, the nurse would ask over and over, “Was she really off the mat and on the floor? Are you sure she wasn’t just almost on the floor?” if you didn’t get the idea the first time.

The number of charted falls decreased. We were doing well; people continued to try to get out of bed because no one was there to take them to the bathroom or comfort them when they were scared, but it was not an official problem.

Maybe the actions of a State Tested Nurse Aide can be argued not to be the facility’s fault because the person was state tested, so how could anyone have known they wouldn’t do a good job? Officially, maybe training is the only way of telling if someone is good, even if it doesn’t actually tell you anything. As with most things I write about, until people actually care about what’s going on and not what they can pretend is going on, I don’t think it will ever get better.

The truth is that what needs to happen to have good aides is not about classes or certifications, it’s about the people you hire and the environment you put them in.


On a semi related note, let’s talk about home care.

Imagine a person named Laura. She is a senior who needs some help, so the planets are aligned for everyone to start making her feel like she needs to go live in a nursing home. Sometimes she feels that way too, like it would be easier on other people and she doesn’t want to be a burden. But given the choice, she really wants to stay in her house.

Laura is able to get 24-hour help. An aide stays in her house to cook meals for her and remind her to bathe, take medication, and manage her diabetes. There are two factors that make this more affordable: 1. an aide with no certification can be paid minimum wage and an STNA isn’t going to be paid much either; and 2. if an aide works 24-hour “live-in” shifts where his job is mostly just being present or keeping the client company, he doesn’t have to be paid by the hour.

This is pretty cool, but it only works because Laura is able to take all of her medicine by herself. If Laura has shaky hands and can’t give herself her insulin shots, it is illegal for her aide to do it because he is not a nurse. How can Laura’s support needs be managed now? Will a Licensed Practical Nurse have to stay with her instead of an aide? Will a nurse come to her house every morning and night, give her the insulin shot, and then leave? Either way, Laura’s support needs become more expensive and complicated because of a task most people can learn to do in a few minutes.

For some people this might be the push that leads to them having to move into a nursing home, all because of the notion that you need to go to school for two years to give someone an insulin shot. And those are my thoughts on training.

PS. I was reading up and it looks like the insulin thing is specific to California, but I'm pretty sure there are other simple tasks (like giving eye drops and handing someone a pill) that have to be done by an LPN or RN throughout the US.


  1. Your posts about all these little episodes of dehumanization never cease to shock me. They shock me because I know the people in these stories aren't abusive or neglectful, and would probably report a coworker who *was* abusive or neglectful --- there's just such a low bar that's apparently set for what "doing enough" for the people in your care is! I did not know the bar was so low, and I really, *really* want it to be higher. I wish I knew how to change things so that it was; the only ideas I have involve paying caregivers more and changing the way they're taught in school, or trained on the job. Not just to have professors tell them "disabled people are people, they need their dignity respected and their wishes honored" but maybe to actually talk to, and learn from, disabled people about what good caregiving looks like to them. Like, if you're job-shadowing in, say, a hospital or group home or whatever, in my half-formed ideal scenario you would be shadowing the people who are staying there as much as the people who work there.

    And your friend Zach sounds a lot like what *I* think of as a good care-worker.

  2. Your "Laura" scenario raises A LOT of really vexing issues in my head, though. I agree with everything you wrote, that simple medical care like helping a diabetic person with their insulin shots can be done by people who aren't nurses most of the time. (I do not find it impossible to imagine a person who wouldn't have the first clue what to do if a diabetic person asked them for such help, because I am that person. And of course third-party observers, particularly of a bureaucratic, official nature, have no way of knowing which non-credentialed person knows all about supporting a diabetic person because diabetes runs in their family and they've always had to help their mom or their grandma with her insulin and it's now second nature to them, which has never done it before but could pick it up readily enough, and which will never be able to do it to save their life.)

    It seems like maybe there's room for on-the-job training in things like this, or for short, simple and cheap certification classes. And there's a *monster* nurse shortage going on right now, so maybe these rules about when a nurse has to be on hand are going to have to be loosened anyway.

    There are other Lauras, though, whom I can't imagine faring well without a nurse; a Laura who requires an IV drip, for instance. Putting in an IV is hard --- my mom was a nurse before she switched to full-time momming, and she says she never mastered that skill --- and you could probably seriously hurt someone by putting one in wrong. But IV Laura ought to be able to stay in her own home, too, in my mind, and not have to be a gazillionaire in order to afford the kind of medical supports she needs.

    I'm now pretty sure we need socialized medicine, but I'm *not* sure that would be enough. It might even come with its own set of pressures on Laura to enter a nursing home.

    1. I don't really think the fact that some people wouldn't be able to learn to give an insulin shot means anything about insulin shots and giving medication in general. I mean, when I started working in home care a few months ago I got a lot of jobs where I was expected to do housework, which I wasn't really able to do on the level that was expected of me at some of the jobs. Housework is something that not everyone can do or learn to do, but that doesn't mean people need a license or certification to do it. And I was never suggesting that aides should be put in a situation where they're going to be given insulin shots without anyone showing them how to do it.

      "But IV Laura ought to be able to stay in her own home, too, in my mind"

      I totally agree--I don't think people only deserve to live in the community if their needs are inexpensive. But in the present day, in a capitalist society that is obsessed with institutions, it helps. So I don't understand why inexpensive needs have to be made expensive.

      An IV example seems pretty different to me anyway, because LPNs cannot do an IV, only RNs can. Sometimes LPN seems like this weird category of people who just exist to do things that aides aren't allowed to do but that don't really require a lot of study.

      "I'm now pretty sure we need socialized medicine, but I'm *not* sure that would be enough. It might even come with its own set of pressures on Laura to enter a nursing home."

      How do you mean?

    2. "And I was never suggesting that aides should be put in a situation where they're going to be given insulin shots"

      GIVING insulin shots. That sounds like the worst job ever.

  3. I'm not altogether sure what I mean by it, but I can think of two things right now: one, that a capitalist society obsessed with institutions can change one part of that --- capitalism, say, at least in the medical sector --- without changing the other, the "obsessed with institutions" part. Also, my intuition tells me that pressures to go for the cheapest option don't go away when the state is paying; it just means the pressure would come from the state instead of your relatives or friends.

    This isn't a dis on socialized medicine, at all --- I think it's way better than what we have, I just think it won't, on its own, necessarily guarantee autonomy for disabled people. Necessary but not sufficient, you might say.

    1. That makes sense.

      One thing is that institutions aren't always the cheapest option, though. People just are used to thinking they are.

    2. There's also the issue that states are themselves a form of institutional authority.

      A country with truly socialized medicine (as opposed to, say , the united kingdom, where public healthcare and private medicine "compete" but where those seeking public healthcare people are sometimes resigned to lesser healthcare) would necessarily be drawn to use systems of authority similar to its own. The Soviet Union, the first country with socialized medicine, relied heavily on institutions despite the cost. Removing the aspect of profit simply meant that the state was more willing to shoulder the various financial burdens that were deemed necessary.

      Nonetheless, in terms of forming disability policy within a particular country such as the United States, the occasional focus on cost is a good. On a purely tactical level it can help cement policy or convince people to provide aid that will allow people living now into their own homes within their own lifetimes when that might not otherwise be possible.

      -Pancho Ruiz (your blog has declared me anonymous for some reason)