Why nursing homes are hellish places

I just found something I wrote last year and thought it was worth posting. Warning: it's very dark!

Nursing homes are hellish places. I can’t speak for every nursing home in the world. I worked in one for 8 months, have been in a few other ones (training, working with clients who lived in nursing homes, etc.), and have been a support worker in various other settings (some of these things are also true in those settings). I think there’s a system in place that causes residents of nursing homes to often be in hellish situations–treated roughly, severely physically neglected, and denied kindness, respect, and freedom at a time in their lives that is likely to be very confusing and painful.

The people who appear to be responsible for this are the staff who work directly with the residents–the aides and charge nurses (LVNs). And these are the easiest people to blame when something bad happens, like a resident getting injured or sick due to neglect. Not only does it seem to be the aide or LVN’s fault, but they’re often from marginalized groups–poor, women, immigrants, POC–so it’s easier for higher ups to project something negative on them. They weren’t empathetic, they’re not kind, they were too lazy to take care of their resident. Due to language or cultural barriers, the aide may not be able to present themselves in the best light or make the best impression. It also is easier to fire or punish this person than to change the system.

However, what’s actually happening is that they’re put in an impossible situation.

They’re paid very little, and aside from the obvious stresses and difficulties of being poor, they may be doing things like picking up extra shifts–so, like, working 24 hours in a row. They might be trying to raise kids, work another job, or be in school at the same time so they may not be sleeping much or at all. Obviously, all this stuff affects how functional someone is and how fast/well they can work.

But there’s the other thing which is that too much work is assigned. Like, when I worked at a nursing home, the minimum required ratio at night was 1 aide to 24 residents. (Often it was like thirtysomething residents–but since that wasn’t actually legal I won’t talk about that.)

So, let’s say 12 of these people aren’t continent and are supposed to be changed every 2 hours, let’s say changing & cleaning someone takes 10 minutes. (Which I’m absolutely sure someone who doesn’t know anything about it would say is SO much longer than it really takes! You should be able to do it in 5 minutes! But also it’s against the law to have diapers and wipes out and visible on a table in someone’s room, they should be away in a drawer. But you should be able to do it in 5 minutes even though you might have to change the person’s bed and clothes. Well…I’m saying 10 minutes. Sorry.)

Anyway, doing that job already takes 2 hours. But also there’s helping people who put on their call light asking for help getting to the bathroom, or for a glass of water or something. So let’s say 3 people do that, the water takes 5 minutes. One person goes to the bathroom and back in 5 minutes. The other person goes to the bathroom and sits there for a long time–you’re supposed to stay with this person because they are a fall risk. (You are responsible if you leave them alone and they fall.) So the whole trip takes 15 minutes. Now we’re at 2 hours and 25 minutes.

Also, someone is confused and is getting out of bed, walking up and down the hall, and walking into other people’s rooms and touching them, which is scaring those people. You realize this is going on, so you go and convince that person to go back to bed. This takes 10 minutes. (Also, the LVN finally comes on the hall–you haven’t seen her all night–and wants to drug the person to keep them from getting up, which I’m pretty sure is illegal, and is definitely a horrible thing to do. But maybe you can see where this kind of decision is coming from.)

We are now at 2 hours and 35 minutes for what was supposed to be 2 hours of work, and our hypothetical self is working without ever taking a break or going to the bathroom or anything. Also, I forgot that you’re supposed to be filling out this computerized chart of what everyone ate and if anyone went to the bathroom, and if so, how much, etc. I don’t really remember how long this takes overall, but let’s say that you do it for 20 minutes during this “2 hour period.” So we’re basically at 3 hours. You are working at a speed that isn’t realistic; you’re also probably exhausted because of your life circumstances that I mentioned earlier; and you are 1 hour behind in your work.

Oh, by the way, pain: getting the nurse (who is stressed & busy) and trying to get her to give a pain pill to someone who is screaming in pain. And, by the way, emotional pain, just kidding. Like, someone is terrified, or miserable. That person is crying. You’d like to go and talk to them and keep them company. Just kidding, it’s 3 people. You’d like to go talk to these people. But you can’t talk to any of them, you don’t have time. But you go talk to one of them.

Then, you hear an alarm going off, indicating that someone who’s a fall risk is walking around, but you’re pretty sure it’s someone who, while she’s technically a fall risk, is always getting up and walking around by herself, but she never falls. So you keep talking to this person who’s upset. The other person falls and is seriously injured. Also, you’re in a lot of trouble.

Basically, the actual circumstances of the job encourage you to not care about people at all–to do a half assed job with the physical act of taking care of people (not cleaning them very well when you change them; just throwing random clothes on them; not brushing their teeth; transferring people in a very fast brusque way that is physically uncomfortable for them), never mind their actual preferences (you’ll help them get to the bathroom when YOU can carve out the time to do that) or God forbid their FEELINGS (how could you possibly have time to just sit and talk with someone?). The job is SET UP LIKE THIS because the workload is not realistic. Meanwhile, the higher ups expect you to get all your work done, AND the things they officially ask of you are like, to be gentle and polite and respect people’s preferences.

So if the aide doesn’t get their work done or is short with people, the higher ups are like, oh they’re a bad aide. (To be clear, I obviously don’t understand why someone would speak cruelly to an old person they’re taking care of. I do understand neglect and roughness in this context–the former of which especially can be really dangerous.)

And the higher ups maybe aren’t evil. I’ve never been one. But when I was an aide, the nurse manager was this very soft spoken lady who seemed very sweet and caring (btw she also came off kind of upper class and seemed to find the working class aides rude and uncaring and stuff) but like…at best, she just didn’t get it! And I’m guessing that the further away you get from the actual situation, the less you get it. And those are the people who set the job up.

We Just Don't Know

Today my boss (Anna), her dad (Richard), and I were riding in the car. As Richard parked the car a disabled young man went by with his staff person and Richard recognized him from a class Anna had taken. He started waving at the man through the car window and the man stopped walking and turned to wave back at him. The young man's staff person, who was facing away from us, urged him to keep going down the street. The man tried to keep waving at Richard. The staff person, still not looking to see what the man was waving at, moved into his line of vision and tried to obstruct him from looking in our direction. He successfully got his client to stop waving and continue down the street.

Discussion questions:

1. Did the staff person assume the disabled man was not greeting a person, but just smiling and waving at nothing?

2. Or, did he just think that it was a waste of time for the man to interact with someone?

(Edit a few months later: I now know that these guys are Deaf so my impression of the situation was at least somewhat unfair--the staff person wasn't trying to obstruct his client's vision, just get where he could sign to him.)

training

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.

2

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.

3

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.

Creeps

Once a week I work a shift with a lady with dementia. Emily is very together and independent compared to other people I’ve worked with, but she does get people confused and embellish events over time. Sometimes she complains about her other aides and I have no way of knowing if a particular story is true, but it doesn’t really matter as far as my job goes. (The things she complains about are aides being incompetent or annoying her, not things that are dangerous if they’re true.)

For a few weeks she has been complaining about Marsha, who works the shift before me. This person has always been patronizing to both Emily and me, but today was the creepiest of all. I arrived at work and Marsha immediately told me, “You know, Emily gets confused. You probably haven’t worked with people with dementia before. They’re like children. You should be like this.” She patted me on the shoulder and said “There, there” to illustrate how I should behave if a person with dementia disagrees with something I do. “You probably don’t know what people with dementia are like. You have to treat them like a kid. If she says I did ___, that never happened.”

This was in response to me saying, “Hi, how are you? How has Emily been?”

Anyone can lie or be mistaken. In the absence of Veritaserum and Pensieves, I don’t assume everything is fact. But as soon as Marsha started trying to tell me about people with dementia and how I should pat them on the shoulder, I became sure that she has said rude things to Emily, because she is obviously a creep.

If someone is mad at you and you can’t even accept that they’re mad, and instead you go around talking about how they don’t know anything and anyone who listens to them is too inexperienced to know better, you seem like a huge creep because you’re trying to control and manipulate vulnerable people. Marsha knew that because Emily has dementia, her version of events is not going to be respected. Also, she had long since formed an impression of me as someone who was young and inexperienced, so she hoped that I could be convinced to accept anything she said.

Maybe if I was actually inexperienced this would work, and that’s really sad. The truth is people with mind disabilities are just people, but there is a big racket about needing to have “experience” with people with a certain diagnosis before you can relate to them or even interpret what they say. It’s not like people with dementia talk backwards.

Yes if you can’t cope with anyone being different, you probably shouldn’t work with people who have disabilities. But that’s a much bigger problem than, “Oh no, I don’t know how to work with people with Down Syndrome, when I’ve only worked with people with autism!” The idea that you have to read a book or have tons of uber specific experience to use your own judgment when relating to another human being is just nonsense. And it gives people a lot of power if they present themselves as someone who does understand this disability and is therefore the authority on how someone with it should be treated.

Before today I just thought Marsha was a patronizing person who understandably got on Emily’s nerves. Now I feel like she definitely is a creep, and although I doubt she’s done anything abusive, I bet she’d be great at covering for herself if she did.

Unfortunately, being a creep is not considered a valid reason for someone not to be allowed to work with vulnerable people. I have been working with creeps as long as I’ve been working. If I ever find myself in a support job where I do not have to interact with a single creep, I’ll feel like things have really changed.

Rabbits

When I worked in an institution I was afraid that I secretly liked institutions.

I was afraid that I liked the fact that I had a very specific job, that I would get told off for even trying to plunge a toilet myself instead of calling the person whose job it was to do that. I was afraid I liked all the alarms and call lights that worked in the same way, the small number of kinds of beds where once you knew how to operate a few of them, you knew how to operate them all. I was afraid that I liked every bathroom having the same color washcloth and the same brand of shampoo.

Obviously I am Autistic so on the surface some of this makes sense, but it's also something other than that. I was worried how deep staff infection went and worried that scheduled lives had started to seem normal to me.

I've been working in "home care" for a few weeks now and it's definitely hard for me to have to do stuff other than physical support when I have trouble cooking and cleaning for myself. But it's incredibly worth it.

I don't think I had really thought about the distinctness that a person's own home has. Not just the space but the way they do things, and how their ways and the space interact.

I love messy rooms full of dirty dishes, tables of grandmotherly objects like wind-up Easter rabbits and Christmas trees that are up all year. I love obsessively organized rooms too, with labels on everything. I love getting to work with someone who hasn't been moved across the long term care hall to a different room with a different stranger, but is living in the house where she raised her kids.

I feel very cheesy describing it this way but it does feel like my function is to be part of the machinery that helps someone keep being themselves, and that's really exciting.

"Would it kill staff to ever show the slightest bit of respect or compassion to their euphemisms?"

This is the opening line to a lot of my mental post drafts but pretty much all of the drafts are just different stories about my adventures working at a nursing home, at which I am going to work for 24 more hours before I move to California, where I am considering working in a gas station, or maybe becoming a professional Pokemon trainer, but most importantly not touching this kind of work with a ten foot pole for the rest of my life.

We'll see how long I can keep that up.

My mom asked me what kind of jobs I was thinking about applying for in California and I didn't know how to explain why I might not want to work as an aide anymore. When the average person hears that you work in a nursing home or with disabled people, their reaction is to think of you as a nice person and, I think, even gentle, which is more important to me. It seems like such a departure for me to explain why my inclination for support work actually feels like one of my worst qualities, and how I feel like if I was a braver, more adaptable, or just more ethical person, I would dive into a completely different line of work and never come back.

I think even a lot of people who would consider themselves fairly "radical" or social justice-y wouldn't understand why I feel like there is a huge push toward unethical behavior in a lot of support jobs. If someone isn't familiar with it it is easy to tell me I'm worrying about nothing and I should just feel proud of what a good person I am for working in a nursing home.

I tried to explain to my mom by telling her something small. People who work on the night shift are assigned to get two or three residents up and dressed by the time we leave, which is about seven. Sometimes we're supposed to shower them too. According to the rules, we're supposed to start get-ups "no earlier than 5:30," but this is one of the rules that no one will care if you break, and in fact it could even be considered a good thing.

If someone has to leave early, they will have their residents dressed by five or six, sitting in the hall in their wheelchairs. Some of the residents quietly push themselves around by their feet, but most of them just sleep sitting up. Some aides will just get their residents that early every day so they can get other work done after. If someone is working a double night shift and day shift, then they might just get all the residents on the hall up starting during the night shift, so they will have more work done early.

This is a decision that no one I work with would ever question, because you are getting your work done by the time it's supposed to be done. The day shift aides would probably even be pleased by a night shift aide doing this, because the person would be able to get more small things done on the hall before they leave. Basically a night shift aide who gets people up really early is seen as a competent worker who organizes their shift in a way that works for them.

You might be wondering what I think is so wrong with getting people up early. I mean I admit that in the grand scheme of things it's not exactly abusive and sleeping in a chair isn't going to kill someone, but to me it really shows how we don't put the comfort of our residents first or focus on what they want. I wouldn't mind if I had to get up and sleep in a chair in my clothes sometimes, but having someone get me out of bed to do this on a regular basis would be pretty annoying, especially if it was because they saw me as a task to get out of the way and not a person to be supported.

Anyway, I basically told my mom that this was something that my coworkers saw as a normal and harmless thing to do and it was an example of why I might not want to be an aide anymore. My mom told me that I was "very kind" but I should think about the practical reasons why people would have to get their residents up early. It is hard for me when people have to tell me I'm "kind" just because I am trying to think from the perspective of people I have a lot of control over, especially because it seems like a lot of people think that part of being competent or just being an adult is thinking about things only from your perspective and the perspective of people who have power over you.

Good work in bad places

To do good work in bad places has been an ambition of mine for years. I didn't even remember how much I had written about this until I happened to be looking at old posts on this blog. Originally I think I wanted to work with kids with autism and be the only person who was being gentle and not yelling in their face.

I do remember this one woman at The School who I'm sure contributed bad stuff in lots of ways (in an ABA school it's not like an individual instructor can really work against a fucked up behavior plan), but she was just very gentle. When the kids got excited or took initiative in making jokes or plans, she smiled to herself. Other teachers and instructors would jump at the chance to correct a kid's movement or word choice and they would have almost a hateful look in their eyes. This woman would correct them when it would have gone against the rules of her job not to, but it was softer, more like the way a mother or big sister would tell any kid to settle down and use their inside voice.

I'm seriously glad she was there, although obviously, who knows how the kids feel about it.

To do good work in bad places is an ego trip. To do things the way someone wants or be there right away when someone wants help. Having a nurse pass on a message from a resident, that I am the only aide who actually brings ice in the morning. That guy (who I'm glad has gone somewhere else because he really hated it here) would sometimes just stop me and say, "Anyone ever tell you you do good work?"

At three AM in the bathroom one of my residents was telling me how much it frustrates her that she has to spend the day in the activity room when there's so much she wants to get done in her room. "I want to write letters, my flowers are dead and no one has emptied the vase and new flowers are coming tomorrow. I can't get anyone to empty the vase." I threw the flowers away and emptied the water into the toilet of another room. She said, "Thank you so much, I don't have any money but if I did I'd give it to you."

There is also this thing with women with dementia, maybe one part of it is actually caused by the dementia, one part niceness, two parts fear. Or I don't know what to call it. Maybe for some people it's mostly friendliness, but it makes me uneasy. "You're so pretty." "You're so pleasant." "You're so nice." "You have such a pretty face!" "You're a good angel." "Thank you so much." "I get such good help from you, I want to give you a hug." "You're WONDERFUL."

Jesus Christ, no I'm not. I like hugs but not these hugs. I don't think I am the only person who gets them from most of these women--that is the first scary thing--but even for the people who I genuinely please or impress with my gentleness or carefulness, the satisfaction at pleasing them starts to go away pretty fast because I don't want to work somewhere where someone thinks I am special for listening to them or trying not to hurt them when I move them.

I used to want to work somewhere like that.

I'm not the smartest, fastest, nicest, or strongest person in the world. But I am someone who has a certain value set when it comes to working as an aide. I'm pretty aware of the ways that staff people can fall into abusing and controlling "clients," and I have a strong feeling that I'd rather be played than take away more freedom than my residents have already lost. I want to serve. I want to treat people as individuals. I don't want to get mad at people just for not fitting into a schedule. I don't want to treat people like objects I am moving from one place or time to another.

When friends have tried to encourage me to work somewhere that isn't an institution and doesn't have shitty ethics, I remember a time at camp when the awful guy was complaining about a guy with a disability who in his opinion acted with too much authority and was afforded too much respect by the other campers. "Sure, he may seem normal," the awful guy said, "but his elevator does NOT go all the way to the top floor."

Every single other person in the room laughed. "That's such a funny way to say it!" one girl exclaimed. All the people in the room happened to be counselors who didn't have a family member with a disability or much experience with disabled people prior to starting this job. Still, they had always treated campers with respect. I was surprised to hear them laughing at a joke about someone's disability.

I started to think that a lot of staff are like chameleons. Their attitude toward disability and their values as a staff person--their idea of what they're trying to accomplish in their job, and their definition of right and wrong--can completely change just based on where they are. The culture of camp was generally positive and respectful about campers so the inexperienced staff people picked this up and imitated it, but they were completely willing to talk about a disabled person in a disrespectful way if they got into a conversation where that seemed like the normal thing to do.

I am not a chameleon. For one thing, I'm disabled. Also, for various reasons I'm not unaware of my capacity for evil, and learning about staff infection has pretty much been my life's work (at this early date). I end up thinking there's going to be staff in bad places and it's better me than a chameleon. I'm not going to be untouched, I'm definitely going to get shaken and pulled into a lot of fucked up things, but I will do less than they would do. Hopefully, if I take their space, they might end up working in a good place or not working as a staff person at all.

This is the way I try to think about it mathematically. I feel like I'm not necessarily going to contribute much to the world, but I can contribute this. I am the kind of person who's more likely to be able to do good work in bad places.

The math is not always working for me anymore.

I read this: Heart Failure: Diary of a Third Year Medical Student. It starts off with this guy promising to always be the person he is. He probably stays more the person he is than someone else would, but it's still pretty horrifying to read.

Blah blah blah Nietzsche blah blah blah I'm thirteen years old, but battle not with chameleons because the longer you gaze into institutions the less and less there is of the part of you that was naturally inclined to do good work.

And one thing I gotta say

When someone kicks me

and I’m annoyed in the moment

and a minute later I realize that I would want ANY DISABLED PERSON I LOVE to kick someone who was trying to do what I was trying to do

that is staff infection.

How Indistinguishability Got Its Groove Back

is something that might someday appear in all its parts and might not. Right now I'm primarily interested in writing about staff infection. Spoiler alert though: the answer to "how did indistinguishability get its groove back?" is exactly that.

Or like I said before: it never really lost it.

I think there are two reasons "staff"--very broadly defined as doctors, teachers, therapists, aides, and a million other people--end up trying to control people with disabilities.

1. They believe people with disabilities inherently need to be controlled.

2. They get in a position of power because of people with disabilities' support needs and/or youth, and have the opportunity to make people with disabilities more convenient to deal with.

Whichever reason is not your reason can be used as a straw reason to support the real reason. I could give examples but basically you know it when you see it. Doing this relates to the Harder Fallacy and Shocking Behavior and things like that.

The way indistinguishability got its groove back is that a person with power looked at a person diagnosed with autism and decided they didn't like the way person's body looked or the way the person felt about things. Or (I say when I get angry) the way the person said no.

The person with power started trying to change the person with autism's body (or whatever). The person with autism couldn't defend themselves because they couldn't talk. Or, if they could, other people felt their beliefs, opinions, and arguments were inherently weaker than those of people without disabilities.

The person with power told their coworkers or their employees or the other people in their field to do the same thing. They by and large did.

Occasionally someone was bothered by it but afraid of losing their job, being seen as a pushover by their coworkers, or not being respected by other autism scientists. But most people weren't bothered. Maybe the original person with power was very charismatic and converted them. Maybe they already didn't like how the person with autism's body looked. Maybe they just didn't think about it, accepted it as part of their job, and eventually came to be a little passionate about its rightness. After all, no one was trying to change their bodies.

When I say this happened once I mean that people in power make this decision about people with autism on a regular basis. Probably as you are reading this a person is deciding to be this way, and their decision will spread because it doesn't occur to many people to question it.

To some extent this is true about any decision within that dynamic. Let's say someone decided that all kids with a certain disability have to play soccer, or read Tarot cards. I think this would actually catch on to a greater degree than you would expect. But indistinguishability is such a historically popular thing for people in power to choose to force on disabled people that it has a kind of momentum. You just think about it and it's already there.

Every person in power who unthinkingly chooses or supports indistinguishability is adding to its mass. It's an army of laziness, an army (usually) of feeling safe in your body. Of being able to talk about how much you love The Office in between sessions of training a kid with autism not to make jokes that don't have an obvious punchline. It's easy to do pretty much anything to people with disabilities but indistinguishability has an army.

The pressure of the army makes room for more soldiers. Obviously. This has all been an excuse for a pun. The way indistinguishability got its groove back is that indistinguishability actually is a groove being worn into the fabric of society by sheer constance and bullheadedness. Have a nice day.

What are restraints?

A lot of staff people talk about restraints like they are not the greatest thing, but it seems like they don't understand what is wrong with them. I am not an expert but this is just how I feel.

I think a lot of people feel like restraints are bad because they are scary-looking. To be honest a lot of people don't even seem to feel that much(1), but anyway. Some people and places are "restraint-free." They believe in being gentle. The question is: is gentleness restraint-free?

I have always been told stuff like, ask someone what shirt they want to wear not whether they want to get dressed(2). Make statements about what's happening, don't ask questions. The idea is that if you do this the idea of disagreeing with what you're doing won't even enter the person's head. Which is supposed to be the ideal thing--no conflict. But these "tricks"--presented as innocently as advice on how to transfer someone--are intended to keep a person from making decisions about their own life that might be inconvenient to you. Is this extremely different from physically making it so the person can't move?

Picture a staff person who reacts with complete sweetness and friendliness to a resident who's trying to do something like get up when he is supposed to be asleep. The staff person distracts the resident with conversation while gently guiding him back to his bed, and it seems that she has successfully caused him to forget what he had planned to do.

I can't think of any supervisor I know who would watch this interaction and not come away thinking, "wow, what a good staff person." The person is avoiding conflict and keeping the resident (apparently) calm and happy, while still efficiently controlling him. The supervisor might even think that this is a staff person who really cares about her residents because she is so "gentle" and didn't do anything that came off as angry or aggressive.

But what is actually caring about not allowing someone to make a choice, and not even having enough respect to tell them what you're doing? Is it caring to try to trick someone to the point that they won't even know what is going on? (If someone has a disability like dementia, is it really going to help them keep skills as long as possible if you are trying to control them by making them confused?)

There are other things that aren't always recognized as restraints, like failing to offer someone the support they need to do something you don't agree with. But I feel like these this are sometimes recognized as restraints. Like in Ohio, leaving someone in a locked wheelchair is a restraint, which seems to be along the right lines. (Chairs are not though, which is weird since at least some people could unlock a wheelchair.)

I feel like the idea is that it's bad to do something that would look immediately abusive at a glance or look like someone's stereotype of a restraint. Merely being controlling isn't recognized as wrong and the implications and affects of trying to manipulative someone into doing what you want are not considered.

(1)In my nurse aide class, we were told that while we would be shown how to put someone in restraints, we didn't need to learn how to do it because it was no longer on the state test. As part of the class we were taught and tested on lots of things that could be considered attitudes or ethics, like "don't try to convert residents to your religion" or "be willing to listen to a resident talk about their problems." Our various teachers, who were nurses, would give us advice from their experiences about how to treat residents properly.

But absolutely no subjective comments were ever made about restraints and why they were no longer on the state test. No one even said, "it's better not to use restraints" or the most basic thing in support of more facilities being restraint-free.

When one of our teachers put a student in a restraint to show us, everyone just watched like it was normal. Except one girl was really creeped out. She said, "I have a friend who can't stand being held still and if you did that to her she would go crazy. Anyone would go crazy if you did that to them. It's wrong." She said this almost to herself, not like she expected a response, and no one gave her one.

(2)When I described this "trick," Pancho Ruiz suggested that it could work not because the person has actually been kept from considering other options, but because assuming consent like this would be sufficiently scary to stop the person from disagreeing with staff.

    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.

2

    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.”

3

    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.

slow

This is a little boring but it does remind me of the overused simile where you feel like you are plunged into ice water. I was at work around midnight, with a resident I really like. Actually the first time I met her I sneakily teared up because she shares a name with my dead grandma, who I remember as a bastion of hyperfemininity and unconditional love. She also just reminded me of her even though she's more snarky. She has a drawling way of talking and moving which you could probably diagnose or not but I think of it as a style. She is always interesting to talk to and encourages me when the steady lift refuses to roll over her oxygen tubes or the cord for the bed remote.

After we got back from the bathroom and I ran over the tubes and cords, I picked her legs up and put them in bed. I aspire to someday do this in a way that doesn't hurt her bad leg, but if there is a way, I haven't learned it yet.

Her: Oh my God.

Me: I'm sorry!

Her: No, I'm sorry...for having feet.

Me: You're sorry for having feet?

Her: For having big feet.

Me: I'd be more sorry if you didn't have feet.

Her: Oh, God. That's one blessing I have.

(At this point I was expecting a joke about being blessed with big feet.)

"All the children were normal," she said. I sort of froze and, after a characteristic pause, she continued, "All the money and time that goes toward an invalid..."

I don't think I said anything else before I left. Maybe I said, "Yeah, well," which is the best response because maybe it leaves room for everything I could want to say. Anyway I had the ice bucket feeling.

At three she put on her light to go the bathroom. I actually felt nervous about what it would be like to talk to her, someone I had always looked forward to talking to before. Once I got her in the bathroom I crouched on the floor because my legs had hit the feeling where they feel like some other appendage that I'm using as legs by mistake. I closed my eyes but weirdly I almost felt afraid of doing this in front of her now as if I didn't want her to see my weakness.

She asked how I could sit like that so early in the morning; she didn't think she could. She had dreamed she went hiking with her daughter in Big Sur, where she has never been. After a while I wondered if she had fallen asleep in the bathroom and if I should try and wake her up.

"How is the bathroom stuff going?" I asked. She couldn't understand me the first time (this is not because she is old; I'm not the best conversation partner for anyone who has the mildest hearing or processing problems in the world). When she understood the question she thought about it and said, "Slow...like me," with a crooked smile. I realized one of the things I most admire about her is the grace of her slowness.

Hospice

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.

This is just something I've noticed in a few environments. I work in a nursing home right now but I think it also applies to staff who work with people with DDs*. The idea is that if a "client" or other euphemism is rude to you, you can be rude back to them.

Sarah: I don't like you!
Aide: Well, I don't like you either. (turning to other person) Look how obnoxious Sarah is!

Okay, let's take a minute because this is really weird! First of all, the experience of having someone who openly dislikes you come into the place where you live and take care of your personal care stuff has got to be depressing. I can't help but think it just might make someone LESS LIKABLE. It also sounds scary, no matter how principled the aide is about not letting their opinions affect their work.

My personal feelings aside though, this just has nothing in common with how service people act in, like, every other type of job. If you were cashiering and a guy was yelling at you for ringing things up slowly, you would apologize. If you were cutting someone's hair and they started bitching, you would go along with it. It doesn't matter that they're being rude, YOU WORK FOR THEM.

I guess some people would say this is because unlike long-term euphemisms, this kind of customer can take their money away from you at any time. But I don't really think this is the whole thing. Bus drivers are pretty nice and I'm not exactly going to go buy a car if they piss me off. When I worked at my college dining hall I would have gotten in trouble if I'd been rude to someone who was eating there, but they were going to eat there anyway.

Really I think the whole business is more simple. When you are being paid to do things for other people, you put yourself out, because you are working. If you did whatever you felt like it wouldn't be a job. It would be doing something nice for someone because you wanted to.

Probably a lot of people in service jobs like doing nice things for people, and that's part of the reason they chose the job they did. But I think some people who do support work never really separate doing their job from doing something for someone else in real life. They don't do bad work--they really care, and they have good relationships with the long-term euphemisms who meet them halfway. But if someone doesn't meet them halfway, no professional code snaps into place, no "the customer is always right"--there is just this person you have to take care of, just like if you had to take care of your grandma and she was mean. But it's not the same thing! You work for them!

I just think this is creepy because I would be creeped out if I was the long-term euphemism everyone hated and kind of glared at while putting my clothes on and giving me a shower. But it's also just not professional. Sometimes I think it happens because, without really acknowledging it, we recognize that this class of clients can do less to punish us if we piss them off. I don't think this is as consciously selfish as I'm making it sound, but that's one of the things that makes it scary.

*(Actually I think there's an extra thing when it comes to DDs, because staff sometimes have a feeling even if they're working with an adult they are supposed to be shaping/improving the person's behavior in the way they would with a kid. So it's not even that they're being rude in response to rudeness, it's that they actually think doing their job well includes telling a person to say please or think about how the things they ask for affect their staff person.)

I am working on a post about how much I hate this (not this particular post, but the whole discussion), but I got sidetracked by thinking about a particular intersection of sexism and ableism.

I don't think I'm the only person to have witnessed this series of events:

A young woman in a staff role encounters a developmentally disabled guy who "accidentally" touches her breasts, jokes about her being a stripper, jerks off in front of her, etc.

The woman is upset. She talks to a more experienced staff person, or to her supervisor, and is politely told to get over it.

Don't be upset, it's funny. He can't hurt you.

Don't be mad at him, feel sorry for him because he doesn't know any better.

When I talk about this I don't mean to imply that men with developmental disabilities sexually harass women more than other men. I'm also not sure that people's reactions are that different when it comes down to it. The staff/disabled power dynamic is just stacked on top of the idea that men should probably get to do whatever they want, so that both people are getting a shitty consolation prize for not having power.

I mean, what you tell a woman in this situation basically boils down to, "Why not be a good sport and let him have this one thing? At least you're not disabled."

disabled staff person no. 03847101

disabled staff person stuff is really weird

because I barely had a staff person.

I've had doctors and I guess therapists in the resource room when I was in middle school, but the truth is I don't really know what it is to have a staff person like some people do.

on the disabled vs. staff lines, I can't say exactly I have been on both sides.

as a staff person, I do sometimes feel scared. like this summer, when this guy kept saying disabled people who get upset need strict control and he wished he could hit them. and when I told my boss she told me I should have talked to him about why it upset me.

"it upsets me that you want to hit disabled people, because I'm disabled."

stuff lodges in me. I am not staff even though I'm staff. things happen and they stick in my throat.

other staff are like chameleons. if you're taught to be respectful to disabled people, you more or less are. if you're taught that "this is the real world" and you shouldn't ask them what they want because it takes time, you will enter THE REAL WORLD. and you talk like this:

"people with cerebral palsy are depressed and angry that someone has to do stuff for them, but fortunately these people have MR so they don't understand and they're happy."

staff person: "oh yeah, I guess that's true."

"I feel like some people talk to disabled people like they're children."

staff person: "yeah! they're just people and should be treated normally."

"he looks normal but you can see his elevator doesn't go all the way to the top."

staff person: "hahaha! that's such a funny way to say it!"

will the real staff person please stand up? probably not.

I'm not like this (I think)

cause I'm a real disabled person and I get to have weird conversations like this:

"I think it would be fun to work in a group home but I'd feel bad that people have to live there."

my aunt (who is in a care profession and was giving me advice on jobs): "well, for some people it might be more convenient. they chose to do it after all."

"actually, a lot of people aren't given the choice."

my dad: "amanda means the disabled people not staff who live at the group home. see, look how much she cares about the feelings of disabled people! isn't she caring?"

yeah, so caring. unable to enter THE REAL WORLD and see a bunch of objects or problems in the place of humans. unable to see these things that shimmer in and out of different meanings--are they cute? do we love them? do we respect them? do we think they'd be better off dead? are we too good for this job or is it inspiring?

but I am not a disabled person, I'm staff.

I'm not being bitter even though I am. I hate that some of my friends see me as the enemy sometimes because I am staff. I also think it's fair.

like, if it's really difficult for me to get a job because disability limits my options, and I get this job, and I don't report/identify abuse because I know they all think I'm weird and incompetent, and people won't believe me and I might lose my job and not get a reference

I still let abuse happen.

remember The School that I interned at, that I got my start blogging about? like, with the aversives and the anti-stimming and the crackdown on language that sounds too old or too young for your age. you'd better believe I kept my mouth shut at The School entirely and never told anyone there what I thought. it's probably been less than a year since I last used them as a reference.

other staff think I am a bad staff person. because I don't know what I'm doing. because I'm shy. because I don't have experience. because I'm scared of/intimidated by disabled people.

because I say:

"I'm sorry"

"wow I'm sorry, I spaced, I didn't realize what you had asked me to do"

"I'm sorry" (when someone has yelled at me)

"well, what do you want to do?"

to disabled people.

one time I called a disabled person by the wrong name, started to walk away, realized what I'd done and came back to apologize. "wow, you're so POLITE!" said the staff person.

I don't live in the real world. I don't live in the real world.

but I do.

all this niceness/incompetence means I find it almost impossible to speak up about anything. I love my people really hard and I'd like to pretend that love illuminates me and makes me brave, but that's a total lie. I can't even suggest to people that when a mobility impaired kid who can't talk starts trying to go somewhere, you should probably let him actually accomplish that instead of obstructing every single desire he slowly and painfully tries to act on.

this kid was pointing at the door, looking at me, and making noises. he never made noises. a very old lady pointed at me this weekend, in the nursing home. another lady said, "help me, get me away from that woman, I'm afraid of her, she's going to hurt me, I want to kick her in the ass, I want her to die."

my excuse is I didn't know that woman's name. also found it too easy to tell myself I was wrong. she was just tired. the stuff she was saying to old and disabled people, and the way she was handling their bodies...she was just tired.

anyway, I know that's what everyone else would say, if I said something.

I am not disabled.

I want to be. got mad at you because I make myself sick.

still kind of believe in doing good in bad places, that because I am not a chameleon I would be better suited to bad places than the rest of them are. also worried that life would become an endless supply of things stuck in my throat--this constant reminder--

I'll die in this room if you die in this room?

--that I both am disabled, and don't deserve to be.

So about advocacy vs. self-advocacy. I don't really like the term self-advocacy. I think in one of my blogger profiles I have "not self-advocacy" listed among my interests. Why don't I like the term self-advocacy? Because I am not a self-advocate.

For example, when I was five I broke my leg. I was a talking person who had two parents and a caregiver, but it took a whole day before anyone realized my leg was broken. My personality hasn't changed much since then. I don't really know why I am not a self-advocate, but I'm just not.

A problem I have with the word self-advocacy used in a political context, which was pointed out by someone in comments at the Thinking Person's Guide to Autism, is that it implies the advocacy of disabled people is always very specifically about ourselves. It also strikes me as some kind of weird attempt to avoid saying disabled person, as per fucking usual. "Some parents of children with disabilities talk to SELF-ADVOCATES!" No, dude. Some parents of children with disabilities talk to people with disabilities. It's not some kind of obscure political group and/or cult.

I'm just someone who talks about ableism and happens to be a disabled person. I mean, it's not this totally disconnected "I write about ableism and if you must know I happen to have a disability." I think I notice and care about certain things because I am disabled, and that affects the way my writing is. But my disability doesn't equal my writing (or my advocacy if you want to call it that) and it always bothers me when someone seems to be interested in my writing because I have autism and not because of the content.

Also, as I've said, I just am not a self-advocate. It's a personal problem. People who can self-advocate but can't write a blog have a different set of abilities from me.

For months I have been intending to write about a guy I used to be staff for. Let's call him Ron. I don't know if any of my former coworkers read this blog, but anyone who worked with Ron will know who I'm talking about when I say that his writing is really hard to decipher and would not be served well by the blogging format. I also don't think he could have an abstract conversation about social justice.

But anyone who has worked with Ron has had this experience: you're on break, or you're walking by on your way to support someone else, or you're brushing your teeth in the morning and this really distinctive voice comes out of the stall: "Good morning Amanda. Would you like to wipe my butt and spray deodorant under my arms?"

I always found it hard not to reply: "Fuck yes!" Not because I have a big attachment to wiping people's butts but because someone like Ron is a real hero to me. So many people go through life not asking for what they need. I remember being awed when a blind hallmate walked into my dorm kitchen and said, "Are any of the burners free? Which one? Am I putting the pan on the right one? Okay, can someone give me the spatula?" Something I feel like I'd rather die than do--which, I'm sure, is part of the problem. So many people go through life not asking for what they need that I know the revolution, when it comes, will owe at least as much to brave people like Ron as to speechless but talkative people like me.

3. How you learn how things are done

My dad told me that most parents wouldn't understand my "visceral reaction" when I see indistinguishability held up as an ideal, or even as something that would be nice. As if we were talking about religion, which he dislikes, he said, "Maybe it's not important and it's not what they should want, but most people want to be normal, so they want their kids to be normal. You can't tell them their choice is wrong."

"I don't really think it's parents who make that choice," I said.

"Oh, so it's just the evil professionals making parents do what they want?"

"Well, yes." Not that I think professionals are evil--this is really about staff infection, not individuals. Lots of the infected are probably great to play Dungeons & Dragons with (more on that later) but they have a particular way of thinking about people with autism.

Parents often don't. I know how I feel about disability in general and autism in specific, because disability is a permanent part of my life. For the average person that isn't the case. Now they have a kid who who has this--what do you call it? Disease? Mental illness? Neurodevelopmental condition?--well, they have this scary autism word that you see on TV. What the fuck. This is terrible. What do they do? What are they supposed to think?

It's perfectly normal, when something happens which is challenging and with which you have no experience, to look to the people around you for examples of how to respond. If your kid has autism, the people around you are often telling you that "recovery" for someone with autism is about looking non-disabled, and that this recovery is urgent, so you go along with it because you're not a fucking autism expert. You don't know how things are done.

Unfortunately, it's exactly the powerful momentum of how things are done which keeps people from thinking much about the things they are doing. Sooner or later the parents know how things are done too.

2. How Indistinguishability Keeps Its Groove

I'm sorry to mix metaphors because I often compare zombies to people like me (unusual gait, does the same things a lot, often judged to be better off dead) but let's focus on some different aspects of the zombie and swivel that image over to another group of people: staff.

How did you get your groove back? Well, indistinguishability, you never really lost it, and that's what scares me. Maybe this is a failure of mine because how can I be more scared by a difference of opinion than I am by more obviously bad things, like violence? I'm not sure. I know I find vampires pretty unterrifying when they're sadistic, but zombies are unbearable because they don't even know or choose the crimes they commit. There's nothing to explain.

So what I'm trying to do is explain. Not why I'm against indistinguishability, cause I have, but why it seems so stupid when I say that, like I'm against electricity. People respond with the most ill-thought-out support, and it doesn't matter at all. "But flapping your hands is against social norms and kids need to learn to follow social norms!" Across the country, kindergarteners are told to be yourself and do the right thing even if it makes you stand out--except when it comes to this one group of little kids. "But other kids will notice that they're different and exclude them!" Okay, just like when kids are bullied for race or religion their teachers start training them to look like white Protestants. Maybe you're thinking people can't pretend to be white, but some people can--and besides, good luck convincing his peers that a kid who can't talk isn't disabled, even if he keeps his hands by his sides.

This is a completely meaningless argument though because anyone who defends a point so weakly has already won. Even if someone says "Yeah, I guess you're right," it's like some interesting philosophical discussion about unicorns. Intelligent input darling, now let's go back to our day job where we kick horses in the face for having horns when they shouldn't.

"Hey hold on," you may be saying, "I'm not kicking anyone in the face! I'm just writing a behavior plan where if Erica talks about unicorns too much she doesn't get dessert."

That's cool but a lot of disabled people have had to live with this stuff longer than you have, and it kind of feels like being kicked in the face.

"Aw, but it doesn't feel that way to me."

That's because it's your job. Everyone's job feels normal to them. Our government likes to pretend that Abu Ghraib happened because Lynndie England is a bad person, but she just had a work environment where she thought it was normal to act a certain way. I know this is an aggressive comparison, but there isn't a point of wrongness where the things that you're doing suddenly feel wrong. I feel that if people were more aware of the broad spectrum of things that can feel normal when it's your job, it would possible to engage them in real conversation about what they do.

How Indistinguishability Got Its Groove Back, part 1

My first writing about disability was about an ABA school that I interned at when I was 20, which was a very ableist and passing-obsessed environment. Being in that environment I was forced to confront things I'd tried not to think about.

I remember when I first started writing about this kind of thing I was very careful to say that I wasn't anti-ABA and thought ABA could be really helpful and useful. I've kind of dropped that whole thing, not because I'm against behaviorism--I arguably am a behaviorist--but because I guess I am against any school or therapist who identifies as "ABA." ABA is technically a way of teaching, not what is taught, but it has historically been associated with physical punishment and it still is very much associated with passing. So I tend to make certain assumptions about anyone who identifies with the label ABA without trying to apologize for or justify it.

Recently my dad was trying to convince me to work at a very old, famous ABA program, because of the benefits. When I pointed out that the person the program is named after used to give electric shocks to children to stop them from flapping their hands, my dad told me that he had researched this on the Internet and "they don't do that anymore." But this isn't enough for me.

It's not enough for professionals to refrain from the most obviously abusive practices, especially if they identify themselves with the doctor who introduced those practices. If you're going to work in an area that has that kind of history, you have to address that history. It's not enough to just stop hitting kids because you shouldn't hit kids--you have to think about why people like you were hitting kids in the first place, and how they got to a point where they decided it was okay, and how you might end up getting to a similar point.