I work for a nice family. I hope they aren't regular readers of my blog because I am going to quote one of them (from memory, so not very well, but I feel like it's an important thing to think about).
"You try to figure out tricks to keep social interactions going, when you have a child who is often unresponsive. Someone asks them a question and the person is waiting and waiting, and so then finally you say okay, and you say something to keep the interaction going. But over time, the time before you answer keeps getting and shorter, and your child is getting phased out of the interaction."
21 February, 2013
19 February, 2013
Official Reactions
(Notes: This post contains references, mostly nominal, to a few things that trigger a lot of people, particularly violence, meat eating, and “national tragedies.” It’s not a very “tight” post because I am trying to explore some ideas I’m not sure about. It’s also very US-centric and I don’t know if people act this way in other countries. Finally, I am not a trauma survivor.)
Is a horrified reaction to images of violence more important than your efforts against violence?
I believe it’s not.
It seems to me like people’s reaction to the sight of violence or graphic descriptions of violence is held up as a higher indicator of their ethics than anything they actually are doing or think. Really, it either indicates who they are emotionally or their willingness to conform to standards of appropriate behavior.
For example, I knew a guy who, when a scene of male on female rape appeared in a movie or TV show, would comment, “It’s so hard for me to watch things like this,” but not in the context of asking for it to be turned off. Obviously there’s nothing wrong with him feeling that way, but it seems like rather than just avoiding things they cannot watch, people announce that they can’t watch something as though other people need to know this, and they sometimes even continue watching.
It’s really not worth mentioning except for practical purposes. First of all, despite the common performance of not being able to handle certain images of fictional or nonfictional violence, images like violent murder mysteries, slasher movies, and “true crime” books and TV shows are very popular. If people really couldn’t stand to hear or think about violent events, then they wouldn’t be reported on over and over.
On the subject of things that are reported on over and over, I think it’s disingenuous for people to act severely personally affected by 9/11 when they are not from New York, didn’t lose anyone, and didn’t have mental health problems focused on the event. Sorry to be so blunt but I don’t see the reasoning for someone from California or Utah thinking that they can claim 9/11 as a universal American experience. It didn’t happen to them and it’s just a symptom of the idea that we have to perform the official reactions instead of our own.
Similarly, when “a nation mourns” or “a nation’s heart breaks” because of a mass murder, you can count me out. Any reaction that I have to hearing about people being murdered is personal, not national, and I also know that there are many more people who I don’t hear about because their deaths aren’t considered tragic in the right way. It’s more important to me to think about how murders can be prevented than it is to pretend my heart is broken by something unrelated to me.
I’m pretty self conscious writing this because it’s probably the most stereotypically autistic thing I’ve ever said. It would be really easy for someone to say that I feel this way because I don’t have empathy or don’t understand the emotions most people have. But I obviously can’t convince someone otherwise if they choose to perceive me that way. The truth is this performance of discomfort and grief bothers me because I think it accomplishes the opposite of what’s necessary to make the world better.
First of all, it alienates the people who should be supported the most. If someone is very familiar with violence or abuse, they might be used to “horrific” stories and images. They might not react to them with obvious distress. When they hear about a violent crime, they might immediately start thinking about how to prevent similar crimes, instead of expressing grief. They might make jokes about abuse or speak about it bluntly. People who act this way are treated like they’re insensitive, inappropriate, and tasteless. I’m not saying that everyone needs to emulate them, but it’s a problem when people who are actually survivors, and/or are working tirelessly to end violence, can be perceived as not caring about violence because they don’t have the same reaction as people who are less involved.
On the other hand, some people who have survived violence are very distressed by images and stories of violence. To some extent, other people will be sympathetic to the needs of a person like this. If someone survived a school shooting and has panic attacks when he sees school shooting related images, people in his life might respect that and not show him a movie or TV show with a school shooting. But this accommodation might be allowed more because he’s seen as a broken victim who needs to be taken care of, than because people think his reaction is reasonable.
If he acts too angry and “entitled” about his triggers-- “What the fuck is wrong with you? You saw this movie before but still told me it was okay to watch it!”--then he’s “taking it too far.” People generally think of someone who has serious reactions to triggers as a person who needs an unfair amount of support. He shouldn’t act like it’s his right for people to be sensitive to his triggers. If his trauma is less impressive--if it was a long time ago or what happened isn’t quite shocking enough, or God forbid he even refused to disclose it--then people see him as even more unreasonable and spoiled.
And even if they respect his feelings, he’s still an outsider in a discussion of school shootings, because his experience is so different from the average person’s and for some reason, the average experience is the most important.
I haven’t thought of this since I was 12, but immediately after 9/11 my school chorus began to prepare for a 9/11 tribute assembly where we would sing patriotic and inspirational songs. We were far enough from the city that only one student at my school, “Lauren,” had lost a parent. On the day of the assembly I heard another girl ask a teacher: “But what about Lauren?”
“Don’t worry, I’m sure she won’t have to go to the assembly,” the teacher said.
I remember thinking how weird it was for us to be having this assembly--presumably to show we cared about 9/11--when it seemed likely to upset the person at school who was most affected by 9/11. It should be obvious that vague communal responses to “tragedy” are not centered around the people who are most affected, but on the emotions of people further away. If not, why are the emotions of survivors inappropriate, insensitive, unhealthy, or, at best, the “special needs” of a minority who must be accommodated?
I think the fetishizing of the emotional-but-shallow reaction encourages unethical behavior. I’m not trying to pick on people who eat meat (I eat meat sometimes too), but I think it’s a serious problem how horrified people will act about the sight of a dead pig or the idea of killing a pig, when they see no problem with eating pork. I’ve even heard someone imply she was morally superior to people who didn’t get upset by the sight of dead pigs--again, she was someone who ate dead pigs. This has implications far beyond eating meat or not eating meat and it can easily be seen in how people have different opinions about the deaths of people they can relate to--children, white people, non-disabled people, Americans--and people who seem too far away to be upset about.
It’s probably natural to be more upset about the death of a child, or someone you had a lot in common with, or the type of person you idealize. I’d probably have more of an emotional reaction to the murder of someone who lived in my city and had the same interests as me and had a disability. The thing is though that this reaction is meaningless. I shouldn’t let it dictate my opinion, because I should care equally about the murder of someone across the world who had nothing in common with me, or if I don’t, I should act like I do.
If I care more about my reaction to something that doesn’t directly affect me than I care about the reactions of people who are affected, or the facts of what happened, or how to keep it from happening again, then it’s like my idea of how to be a good person is based only in having feelings about things--not listening to and respecting people, not paying attention and researching what’s going on, not working to make things better.
This may surprise you but I think people are pretty bad already. But a great way to make yourself worse is to believe that you’re good because you did something completely useless that took no effort.
Is a horrified reaction to images of violence more important than your efforts against violence?
I believe it’s not.
It seems to me like people’s reaction to the sight of violence or graphic descriptions of violence is held up as a higher indicator of their ethics than anything they actually are doing or think. Really, it either indicates who they are emotionally or their willingness to conform to standards of appropriate behavior.
For example, I knew a guy who, when a scene of male on female rape appeared in a movie or TV show, would comment, “It’s so hard for me to watch things like this,” but not in the context of asking for it to be turned off. Obviously there’s nothing wrong with him feeling that way, but it seems like rather than just avoiding things they cannot watch, people announce that they can’t watch something as though other people need to know this, and they sometimes even continue watching.
It’s really not worth mentioning except for practical purposes. First of all, despite the common performance of not being able to handle certain images of fictional or nonfictional violence, images like violent murder mysteries, slasher movies, and “true crime” books and TV shows are very popular. If people really couldn’t stand to hear or think about violent events, then they wouldn’t be reported on over and over.
On the subject of things that are reported on over and over, I think it’s disingenuous for people to act severely personally affected by 9/11 when they are not from New York, didn’t lose anyone, and didn’t have mental health problems focused on the event. Sorry to be so blunt but I don’t see the reasoning for someone from California or Utah thinking that they can claim 9/11 as a universal American experience. It didn’t happen to them and it’s just a symptom of the idea that we have to perform the official reactions instead of our own.
Similarly, when “a nation mourns” or “a nation’s heart breaks” because of a mass murder, you can count me out. Any reaction that I have to hearing about people being murdered is personal, not national, and I also know that there are many more people who I don’t hear about because their deaths aren’t considered tragic in the right way. It’s more important to me to think about how murders can be prevented than it is to pretend my heart is broken by something unrelated to me.
I’m pretty self conscious writing this because it’s probably the most stereotypically autistic thing I’ve ever said. It would be really easy for someone to say that I feel this way because I don’t have empathy or don’t understand the emotions most people have. But I obviously can’t convince someone otherwise if they choose to perceive me that way. The truth is this performance of discomfort and grief bothers me because I think it accomplishes the opposite of what’s necessary to make the world better.
First of all, it alienates the people who should be supported the most. If someone is very familiar with violence or abuse, they might be used to “horrific” stories and images. They might not react to them with obvious distress. When they hear about a violent crime, they might immediately start thinking about how to prevent similar crimes, instead of expressing grief. They might make jokes about abuse or speak about it bluntly. People who act this way are treated like they’re insensitive, inappropriate, and tasteless. I’m not saying that everyone needs to emulate them, but it’s a problem when people who are actually survivors, and/or are working tirelessly to end violence, can be perceived as not caring about violence because they don’t have the same reaction as people who are less involved.
On the other hand, some people who have survived violence are very distressed by images and stories of violence. To some extent, other people will be sympathetic to the needs of a person like this. If someone survived a school shooting and has panic attacks when he sees school shooting related images, people in his life might respect that and not show him a movie or TV show with a school shooting. But this accommodation might be allowed more because he’s seen as a broken victim who needs to be taken care of, than because people think his reaction is reasonable.
If he acts too angry and “entitled” about his triggers-- “What the fuck is wrong with you? You saw this movie before but still told me it was okay to watch it!”--then he’s “taking it too far.” People generally think of someone who has serious reactions to triggers as a person who needs an unfair amount of support. He shouldn’t act like it’s his right for people to be sensitive to his triggers. If his trauma is less impressive--if it was a long time ago or what happened isn’t quite shocking enough, or God forbid he even refused to disclose it--then people see him as even more unreasonable and spoiled.
And even if they respect his feelings, he’s still an outsider in a discussion of school shootings, because his experience is so different from the average person’s and for some reason, the average experience is the most important.
I haven’t thought of this since I was 12, but immediately after 9/11 my school chorus began to prepare for a 9/11 tribute assembly where we would sing patriotic and inspirational songs. We were far enough from the city that only one student at my school, “Lauren,” had lost a parent. On the day of the assembly I heard another girl ask a teacher: “But what about Lauren?”
“Don’t worry, I’m sure she won’t have to go to the assembly,” the teacher said.
I remember thinking how weird it was for us to be having this assembly--presumably to show we cared about 9/11--when it seemed likely to upset the person at school who was most affected by 9/11. It should be obvious that vague communal responses to “tragedy” are not centered around the people who are most affected, but on the emotions of people further away. If not, why are the emotions of survivors inappropriate, insensitive, unhealthy, or, at best, the “special needs” of a minority who must be accommodated?
I think the fetishizing of the emotional-but-shallow reaction encourages unethical behavior. I’m not trying to pick on people who eat meat (I eat meat sometimes too), but I think it’s a serious problem how horrified people will act about the sight of a dead pig or the idea of killing a pig, when they see no problem with eating pork. I’ve even heard someone imply she was morally superior to people who didn’t get upset by the sight of dead pigs--again, she was someone who ate dead pigs. This has implications far beyond eating meat or not eating meat and it can easily be seen in how people have different opinions about the deaths of people they can relate to--children, white people, non-disabled people, Americans--and people who seem too far away to be upset about.
It’s probably natural to be more upset about the death of a child, or someone you had a lot in common with, or the type of person you idealize. I’d probably have more of an emotional reaction to the murder of someone who lived in my city and had the same interests as me and had a disability. The thing is though that this reaction is meaningless. I shouldn’t let it dictate my opinion, because I should care equally about the murder of someone across the world who had nothing in common with me, or if I don’t, I should act like I do.
If I care more about my reaction to something that doesn’t directly affect me than I care about the reactions of people who are affected, or the facts of what happened, or how to keep it from happening again, then it’s like my idea of how to be a good person is based only in having feelings about things--not listening to and respecting people, not paying attention and researching what’s going on, not working to make things better.
This may surprise you but I think people are pretty bad already. But a great way to make yourself worse is to believe that you’re good because you did something completely useless that took no effort.
05 February, 2013
More on this later but I think a big reason for my "invisibility" is how much I lie and cover for myself. I don't even see it. Sometimes I try to keep detailed journals and I notice a bunch of things happening that once they're on paper I know don't happen to most people, but in real time I don't even register what's happening before I start lying about it.
03 February, 2013
hobbies
Sometimes it's hard to tell if there is much of a difference between me and young non disabled people I come in contact with. We have jobs. We live away from our parents. We don't have support staff. When I actually think about it, the difference is that I don't have any hobbies but I don't have what non disabled people would consider a good reason not to have hobbies. Basically, I'd have to either be pursuing some really intense goal like being a doctor, or I'd need to have been saddled with a lot of responsibility, like having custody of my brothers and sisters. In the first scenario I guess it seems single minded and tough of me not to have hobbies, and in the second scenario it's something that people would feel sorry for me about.
I don't feel tough OR sad about not having hobbies, because I enjoy all of my life. I have a bunch of things I'm trying to maintain, which go something like:
1. Work full time.
2. Shower every two or three days.
3. Do the dishes.
4. Eat regular meals and cook a lot of them.
5. Don't self injure or lie in bed crying all day or lie in bed all day at all.
6. Spend time with my roommate.
7. Keep in touch with 4 friends.
8. Wear clean clothes.
9. Brush my teeth so I don't get 7 cavities again.
10. Sleep 8 hours a night. (I love sleeping but if I don't sleep a lot the other stuff isn't possible, so maybe it's more of a means than an end.)
I'm having a little trouble with a few of the things on the list, but generally, they are all working, and I'm really happy with how things are. Which is good, because this is all I can do. I think that at some point I might be able to add more things one by one, but it's only going to be a few more things, and I already know what else I would want to do if I could.
I'm not an especially overscheduled or conventionally busy person, but I can't really add things to my life just because I'm interested in them, because it's not worth the effort. I don't like anything more than I like the first ten things on my list and I will not be able to do those things if I'm trying to pursue other stuff.
Of course, other stuff falls in my lap sometimes and I'm really grateful for that, but it's not a hobby.
I don't feel tough OR sad about not having hobbies, because I enjoy all of my life. I have a bunch of things I'm trying to maintain, which go something like:
1. Work full time.
2. Shower every two or three days.
3. Do the dishes.
4. Eat regular meals and cook a lot of them.
5. Don't self injure or lie in bed crying all day or lie in bed all day at all.
6. Spend time with my roommate.
7. Keep in touch with 4 friends.
8. Wear clean clothes.
9. Brush my teeth so I don't get 7 cavities again.
10. Sleep 8 hours a night. (I love sleeping but if I don't sleep a lot the other stuff isn't possible, so maybe it's more of a means than an end.)
I'm having a little trouble with a few of the things on the list, but generally, they are all working, and I'm really happy with how things are. Which is good, because this is all I can do. I think that at some point I might be able to add more things one by one, but it's only going to be a few more things, and I already know what else I would want to do if I could.
I'm not an especially overscheduled or conventionally busy person, but I can't really add things to my life just because I'm interested in them, because it's not worth the effort. I don't like anything more than I like the first ten things on my list and I will not be able to do those things if I'm trying to pursue other stuff.
Of course, other stuff falls in my lap sometimes and I'm really grateful for that, but it's not a hobby.
31 January, 2013
After much thought I’ve decided that the best way to spend my twenties is by watching live action tween shows on the Disney Channel. My favorite show is called ANT Farm. It operates under the dubious premise that an 11-year-old would be forced to attend high school just because she is a good singer, and that people in San Francisco use cable cars to get to and from places.
If you can believe it, this is actually a better concept than most of the Disney shows and I'm pretty into it. There are a lot of references to Internet memes, which are presumably intended for older geeky family members, unless 11-year-olds are just a lot cooler than I think they are.
But let me tell you what happens every time I watch the show.
But let me tell you what happens every time I watch the show.
I notice this character using a mobility scooter. Then I notice myself noticing him and I realize that I never see people using scooters or wheelchairs on TV, especially not the kind that I usually see people using in real life (i.e. electric ones, instead of the hospital wheelchair that sad disabled people get pushed in on TV, or for the occasional supercrip character, who is always paraplegic from a spinal cord injury, a manual chair that he pushes with muscular arms).
When I see this character, I think, how weird to see a disabled kid on TV. Maybe things are going better than I thought. After this initial reaction, which takes about half a second, I remember that this character isn't disabled--he's lazy and geeky, and one of the jokes of his character is that he uses a scooter because he's too lazy to walk around. It doesn't really surprise me to see jokes about scooter users being fakers since that is an idea normal people are really in love with, but I am a little surprised to see it on a kid's show since it's just so mean spirited. Other times when I've seen something like this on a Disney show, I've looked it up and it looks like there has been some reaction--for example when they made a joke about someone having an eating disorder. But apparently even Disney is allowed to make jokes about people using mobility devices they don't need.
What always strikes me isn't the existence of the joke, but just the fact that this is the only kid getting around like that on the Disney channel, and probably one of the only ones on TV. More than anything else, the joke makes me notice what isn't there.
31 December, 2012
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.
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.
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.
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