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.

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.

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.

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.

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.

Experience placeholder

Remember how I'm always writing posts and saying "this is a placeholder for a longer post or a series of posts?" Usually I don't finish the series and the placeholder is all there is.

Anyway this is a placeholder for a series, some parts written and some not, about the idea of experience.

Experience is supposed to be this all-powerful thing that is impossible to measure or define and therefore is impossible to simulate. Even though it's not possible to measure experience, it is supposed to be possible to tell when someone's experience isn't real enough experience. If you are lucky enough to acquire real enough experience, then you get leeway to say horrible things and treat certain people however you want.

A good example is the response to the woman discussed in my previous post. Her comparison of her son to a mass murderer was wildly popular, and everyone who criticized it was chewed out for being "insensitive" and "judgmental." A repeated argument used against her critics was that they just didn't understand because they hadn't experienced what this woman had experienced. Sure, maybe on a totally superficial, divorced-from-context level, it might seem hurtful to publicly compare a 13-year-old to Adam Lanza because he makes threats.* But when you add the mysterious quality of "experience," the woman's behavior is legitimate and the most obvious judgment is wrong. People can feel good about themselves for understanding the complexity of the situation--which isn't to say they have to understand the facts, or even think about how they would feel in that situation. They just have to say, "Well I can't judge this person, it's complex."

Being around disability is supposed to be such an amazingly complex experience that when you make judgments about how to treat people with disabilities, basic decency and common sense go out the window. Is it wrong to do something violent, disrespectful, or mean to someone with a disability? Well, it's complex. No, it's not complex! It might make you feel like you are a sophisticated person with a grip on real world issues if you can talk about how these things aren't black and white, but it really just indicates that you either support unethical behavior, or don't have the confidence in your own convictions when the fairly meaningless quality of "experience" is invoked.

By the way, one of my coworkers at the non-Dream job is a woman who likes to bring up how inexperienced I probably am in the service of telling me that people with dementia should be treated like children and that anything bad our client reports about her is a lie. She is especially creepy, but I've run into a few people who assume I'm not experienced with disability because I like to treat disabled people normally.

I definitely went through a period in high school when I forced myself to swallow the whole complexity pill, but for a long time since then I have been learning to trust what's obvious. People with disabilities should be treated like other people and situations involving them should be judged the same way as other situations.

I've never seen anyone do this, probably because it's a dumb idea

Remember my lifelong fear that a prospective employer would google me and read my blog? Well it happened. The job is the Dream Job, the Platonic ideal of a job that has been hovering over all the jobs I've had before. Since it was the Dream Job I got it anyway.

I have had it for a while and I also have another job. That leaves one day that I could be earning money in. The day is Thursday. If you live in the San Francisco Bay Area and you or your family member needs an aide on Thursday (or a babysitter if they are a kid) you should think about hiring me. I would also work any night but Sunday if I'm allowed to sleep during downtime. (I wouldn't expect to be paid by the hour for that obviously.)

Think about it, you already know everything about me.