31 December, 2012


warning for dehumanization

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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


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

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

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

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

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

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


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.

28 December, 2012

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.

25 December, 2012

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.

20 December, 2012

trigger warning

tw: recent mass murder and various discussion of other kinds

Nobody liked my original title/premise for this post so it isn't happening. Can I just point out something though about "I Am Adam Lanza's Mother," which is a boring viral post by a lady about how her son, who has autism or some kind of behavioral problem or PTSD, threatens suicide and murder-suicide a lot. I don't even remember the post that well, but I don't know how much more you need to know about it than someone publishing pictures of her 14-year-old on the Internet and saying that he is the same as someone who killed 26 people. I don't even care what her point about mental health services was supposed to be (the impression I get from her blog is that she likes guns, so she is trying to suggest "mental illness" is the cause of mass murders and the main policy issue that people should be thinking about in the wake of them).

Anyway, I'll say it again, I just really don't think it is cool to post pictures of an innocent child calling him a mass murderer just because he said he was going to kill his mom and himself when he was mad at his mom.

I don't think it's a GOOD thing when people with mental health problems regularly talk about killing themselves or other people, but it's just disingenuous as hell to act like people who do this are the same as mass murderers or even have much to do with any kind of murder at all. I don't think I have said stuff about other people but I've gone through a lot of periods where I would bring up killing myself in response to various small frustrations. It's not healthy but I think it is probably normal for people who are having really extreme emotional states and it means more that they need help with those emotional states than that they are going to carry out a premeditated crime.

I'd also like to point out that parents of kids with disabilities talk about murder, suicide, and murder-suicide all the time! I don't like for people to demonize Alison Singer because she did apologize, but she is a famous example of a person who talked about wanting to kill herself and her kid, and basically told her kid about that desire, and was praised for it. I can think of lots of other parents who have been praised for talking about this. No one compares them to mass murderers.

(PS I think it is interesting how much people seem to hate Andrea Yates, when if her kids had psych disabilities instead of her, they would probably feel sorry for her.)

I am feeling a little faint right now and this isn't the most well composed post in my whole blog (maybe I will have to delete it because this is a pretty risky thing to write about when I'm not at 100% cylinders), but these are just some thoughts about how people respond to threats based on whether the person making them can be categorized as disabled.

20 November, 2012

behavior vs. ability

Some people do different things or need different things from the average person. (Or the imaginary average person.) Other people have to decide how they feel about that difference.

1. Should the average person accept that some people do this different thing, and not be mad about it? Should institutions and communities try to adjust to meet the needs of these people?

2. Or should the person who's different change their needs to be more like the average person's needs, change their behavior to draw less discrimination and aggression, and be held responsible for any ways they get hurt if they fail to change?

As a person who does and needs some different things, I feel like option one is the right answer in most cases, unless the different thing someone does is being a serial killer. The majority of the time I feel like it's just a more interesting and efficient way to live.

However, usually a minority group's right to option one is supported or denied on the grounds of whether they can help being different or not. If you want someone to be responsible for your bad behavior toward them, you argue that they are being different on purpose.

One example I can think of is people who are against gay marriage and go around saying, "But gay people already CAN get married! They can marry the opposite sex!" This puts the blame on gay people for not changing our needs to match the majority. I also saw someone who, when asked if gay people were allowed in their religion, said that we probably wouldn't be interested in joining anyway. This implies that if people wanted to not be excluded for being different, we just wouldn't be different.

There is also the whole idea that poor people are poor because of some kind of moral failing and everyone who tries not to be poor isn't. Therefore not helping people who are poor is supposed to be tough love encouraging them to straighten up and become rich.

When people argue for option one, they say that the difference is involuntary. "I was born gay. If I could take a pill to be straight I would. The idea of kissing a man makes me want to throw up." Etc. What I think about this dichotomy isn't the point because it's so universal. If you try to talk about this stuff in other ways most people will not even know what you're saying. When you say that someone can't help being different, you're almost always indicating that you're on their side.

Therefore you can kind of tell what side someone's on just by how they talk about someone who is different.

Medical and mainstream culture descriptions of autism are steeped in option two language. They are very superficial descriptions of things Autistic people do, with the implication that Autistic people do these things simply because they like them, or for no reason at all.

1. "Autistic people stim" not "Autistic people stim BECAUSE" or "Autistic people have motor/sensory stuff going on that causes them to move like this or be soothed by doing this."

2. "Autistic people avoid eye contact" not "It scares Autistic people to look at other people's eyes."

3. "Autistic people avoid touch" not "Some kinds of touch can scare or hurt Autistic people."

4. "Autistic people have 'splinter skills' and strong interests and like to do the same thing over and over" not "Autistic people can learn specific things better than general things, and see number five."

5. "Autistic people like rituals and are resistant to change" not "Autistic people do better when they are in situations where they know what's going on and what's coming next, to the extent that some people can't handle life at all when it's not like that."

#5 has been on my mind a lot lately because the last few months have involved me having to do a lot of unplanned things and make a lot of sudden transitions. This has reduced my quality of life and my ability to do other stuff, which is clearly because I have a disability that makes it hard for me to emotionally and cognitive cope with surprise and change. However some people would say it's because I want to make out with train schedules.

Some OTHER people would probably say that because professionals don't know exactly why Autistic people do certain things (the reasons I'm giving are from Autistic cultural/anecdotal knowledge, not from books), they have to phrase everything in terms of what an Autistic person chooses to do. First of all, the reason professionals don't know why Autistic people do things is because they usually only study how to to make Autistic people not do things. I think their phrasing shows what they are interested in knowing not what they're able to know.

But I also I just fail to believe that people can't say, "It seems like Autistic people have to do this, for some reason."

I made up an imaginary mobility impaired person and I'm going to tell you a slightly unlikely but not absurdist story about his life. People are a little less likely to blame SOME mobility impaired people for their problems, which is why I think this story helps illustrate my point. But I'm also sure that it has literally happened plenty of times.

An imaginary kid named Sidney learns to walk at the usual age, but he always sits down crying after a few steps. Even when adults try to encourage him, the same thing happens. Sometimes they can bribe him with candy to walk across the room, but he cries while he's walking. When Sidney gets old enough to talk, he confirms that walking more than a few steps really hurts.

Not finding any immediate solutions, Sidney's parents continue to push him around in a stroller. Eventually they get him a wheelchair so he can be more independent. As he grows up, a few things change about how Sidney gets around, but since he is an imaginary person I won't go into detail. The short version is, he grows up to be an almost full time wheelchair user.

No one is able to trace Sidney's problem to a genetic condition or an injury to his legs or brain.

If a doctor describes Sidney's disability as "preferring to use a wheelchair and avoid walking," this doctor is not on Sidney's side. The description fails to acknowledge Sidney's experiences and implies that he's irrational. It doesn't encourage healthcare providers to try and help Sidney with his actual problems--in fact it may mean he can't access services he needs. It doesn't encourage other people to accommodate Sidney's wheelchair. It doesn't encourage Sidney to feel confident in speaking up against injustice, seeking help, and just taking care of his own body.

In many ways, this description of Sidney's disability can physically, emotionally, and socially hurt him. If the doctor says he wants to help people like Sidney, Sidney better watch out.

02 November, 2012

I went on Facebook before going to bed tonight and discovered that "Ron" from this post died this morning. I feel a little weird expressing too much grief about this, after all I haven't seen Ron in more than a year now.

He was one of the most original people I've ever known and he lived with so much joy and confidence in himself. More than anything I am so glad that Ron got to spend his life with his family, in his own home, with all the things he loved to collect. I'm glad that if anyone ever tried to stop Ron from living life his way, they did not succeed and by the time I met him (he can't have been older than 50) he was very set in his ways.

No one talked, danced, wrote, or thought like Ron. He wasn't just unique, though. He was kind and he was strong enough to ask for what he needed from other people. He was brave enough to be joyfully himself.

I am so sad that Ron has gone out of the world, but I'm glad that he was in it, and I'm glad that so many people with and without disabilities had the chance to meet him and see what a beautiful person he was.

09 October, 2012


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.

21 September, 2012

Iceberg problems

I wrote something like this in a Facebook comment a long time ago and I realized I didn't ever write it up here like I was planning to. I've been thinking about it because it applies to a lot of things other than disability, but I'm sticking to disability in my explanation of it.

So from your (universal disabled person's) point of view, there's the stuff other people notice about you that's different or seems to cause problems. Then there's your actual problems, differences, and/or suffering which is going to be most obvious to you and maybe some people who are close to you.

I don't know if I'm explaining this well but just think of an iceberg, where people notice the tip of the iceberg but most of the reality of what the disabled person experiences is underwater. Here is an example about Clayton, hi there Clayton if you ever read this blog. (Aside from this most of the examples are going to be about autism.)

When people meet Clayton they notice that he walks and moves differently. Sometimes they wonder if his physical disability includes an intellectual disability. They find out that it doesn't, and then they think of his disability as consisting of how he walks. Sometimes they even come to feel that the way he walks isn't that different after all and then they "don't even notice his disability anymore" or "don't think of him as disabled."

They don't see fatigue and physical pain that Clayton suffers due to having CP, and he said that some people actually try to argue with him when he explains that his disability is more than the way he walks. This can happen with people he's been friends with for a long time.

It's obvious that people do this when they don't have experience with disability, but the weird thing is that they also do it when they do. It's a major trope in arguments between disabled adults and parents of disabled children that the parents will tell the disabled adults they're not really disabled or they're not really suffering. I don't think this is something that happens because anyone is an asshole. People just get really upset when they think someone is claiming an experience they don't really have and they see it as an insult to people who really do have the experience.

As far as I can tell, this is how it works: people see the underwater part of their family member's disability, and maybe they don't even see how things look to someone who doesn't see that. They don't see how maybe if a stranger meets their family member in the right context, for a short enough time, they don't notice how the family member moves or that they have trouble talking. They know when their family member is about to flip out from stress, so they don't realize that to most people, the person is going to appear calm until they're actually screaming.

If they notice that their family member is really good-looking or sweet or charismatic, they just see that as a coexisting thing or (depending on their attitude toward disability) maybe something that makes the whole situation even sadder. They don't realize that some people are actually going to be much more unlikely to notice signs of the person's disability, or admit the severity of the disability, because they find the person pleasant to be around.

Or, if they notice all of this, they think it's really awful and unfair that people don't understand that their family member is disabled and they wish people could see beyond the surface.

But at the same time, when these people look at disabled people who aren't their family member, especially people who they are inclined to see as other or as their opponents, they don't imagine there is anything beyond the most superficial and loudly stated markers of disability, and they even argue with those. They don't try to learn about what might be happening underwater to make this person identify so strongly as disabled. They don't just give the person the benefit of the doubt and assume there is probably a lot of stuff going on they don't know about.

(Probably my favorite thing was seeing someone argue that her kid is more severely disabled than other people who are perceived to be equally disabled to him, because she knows that he works really hard to appear the way he does.)

Obviously if the point of this post was to criticize parents who attack disabled people this way, I'm beating a really dead horse and my current one post a month output could be channeled in a more creative direction. Everyone knows it is boring and makes disabled people feel really bad.

However I haven't seen a lot of people acknowledge that disabled people do the same thing to other disabled people who they don't agree with. I can think of a few A/autistic bloggers and writers, who don't always have the same opinions about disability as each other, but who obviously feel that they have different opinions from most Autistic people who talk about disability and most Autistic-run organizations. Whether they talk in vague terms or about specific people, these writers usually seem to feel that everyone they associate with "anti-cure" or "neurodiversity" or "anti-ableism" is a homogenous army and none of us are as genuinely disabled as they are.

This is pretty interesting and I've had some conversations with these people where they try to argue that yes okay, maybe everyone can't immediately tell they are disabled from reading their blog, but they still have the right to call out other people and question their right to an opinion because they couldn't immediately tell they were disabled from reading their blog.

Of course this isn't limited solely to people who tend to chew out individuals and organizations that I like. I am a pretty big perpetrator of it myself. I tend to perceive every disabled person I meet as more skilled and/or better off than me in some way related to disability.

1. They are better at doing stuff than me.

2. They have more normal emotions than me.

3. They have a better work ethic than I do (which I guess is a way of just saying they have better executive function and don't ever want to cut their face off from being scared to the point that it is hard to do anything).

4. If it seems like they really are worse at all this stuff than me I just figure that they're probably dealing with it a lot better than I am so they're morally superior to me.

5. Or maybe they're not pushing themselves as hard as I'm pushing myself, that must be nice.

6. They have a disability that other people are going to recognize as being real, like they are in a wheelchair. Therefore they have it better than me because they don't have to feel bad about themselves and everyone understands what they're going through.

This doesn't make me very good at being compassionate towards other people or making friends with them, but you might be interested to know that occasionally people slip through and we become friends, and all of these things are usually NOT true. Most disabled people I've become friends with suck really hard at everything, push themselves really hard, and have a lot of problems that aren't immediately apparent.

Not to be overly broad but even people without disabilities can have underwater stuff. Depending on what someone's problems are (like if they have to do with belonging to a marginalized group) they might have more or less underwater suffering and work and experience going on. But we all have insides and we do ourselves a disservice when we don't work to recognize that.

(Note: I obviously don't think it is objective or even defensible to say that there are really "invisible" parts of a disability that no one can possibly notice without having them or being extremely close to someone who has them. We don't see a lot of signs of disability because we're taught to assume that no one is disabled. But even though I think it sucks, that is how most people function now.)

24 August, 2012

"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.

01 July, 2012

to him it was a joy until he ran out into the warm air

About a month ago my mom was here and she said something about wondering if she and my dad had been too hard on me when I was growing up. We were talking about our respective MH stuff and I had mentioned I was probably more likely to kill myself than be unemployed.

If I wasn't like that though I would probably be unemployed. Do I ever want to quit my job. Not for all the ethical reasons. Just the working 3 12-hour shifts in a row with a 4-hour commute and 5 or 6 hours of sleep in between and eating one or two real meals in the whole stretch. I'm very able bodied but I still hate my body for its soreness and slowness and tiredness, my headaches, and I hate my brain for starting off slow even with enough sleep.

Sometimes I have had gaps in my memory a little bit and Clayton says if you don't sleep this will happen and you won't even know.

One of my best friends, who I know doesn't read this blog anymore so I can say this, is someone who I've consistently encouraged and cheerleaded in getting a job. Now they have a job and they are miserable. They live in fear of losing their job and they can't cope with that fear and working a normal amount of time makes them exhausted.

I'm tired too but what I am learning about myself is I can just keep going and going, everything just goes underneath something else. When I think about myself a year ago being all depressed about school and sleeping ten hours a day and eating I want to punch myself in the face. I'd give anything to be sleeping, I'd give anything to be someone who complains about having had less than eight hours of sleep. I'd give anything to be able to sleep without waking up scared. During the weekend I live from cigarette to cigarette and for Athena smiles and that's about it.

You know how I tend to put disabled people into two categories. Supercrips and not. All my friends hate it. It usually makes them feel bad no matter which one they are.

We're not so different, you and I. We all have no choices. If I wasn't more likely to kill myself than be unemployed, I just would be unemployed, and that would be a different thing to live through.

We're always going to be valued for our ability to work as much as an imaginary non-disabled person who even people without disabilities are killing themselves trying to become, especially poor people. Employment, or even just volunteer work (which sounds inspiring but doesn't help you get food or a place to live) is set up as this glamorous and touchy-feely goal for disabled people. It will give us a feeling of purpose.

I'm here to tell you there is no dignity in work. Work does not give life value. Disabled people who don't work don't have wasted lives--just very scary, miserable ones, because the world wants it that way.

29 June, 2012


Writing this in a rush because I’m trying to get myself fed and watered before work, but this is really important and the deadline for public comment is Monday so if you could link it and write in if you have experience/knowledge with these issues, it would be pretty helpful to disabled people who are on Medicaid.

Medicaid Program: state plan for home and community-based services (click “Comment Now!” to share your feelings)

The Administration on Intellectual and Developmental Disabilities wrote an explanation of the situation that is a little easier to understand and here is a PDF about it that is written for disabled people.

This is me trying to explain it and almost dislocating my brain, have fun with this:

The long-term plan is that disabled people who might otherwise end up living in institutions because of their support needs will get “home and community-based services” (HCBS) instead, which means not living in an institution. This is actually less expensive to the government and obviously it leads to a better life for people with disabilities.

However some disabled people feel that the definition of “home and community-based services” needs to be more strict because otherwise, providers could make disabled people live in settings that are basically institutional settings disguised as something else. States get a financial reward from the government for moving people out of institutions and into the community, so there is a motivation to cut corners and try to categorize things as “HCBS” when they really are more of the same old thing.

For example, redistributing the residents and staff of a large institution into a bunch of houses and continuing to run everything the same way as before is not “moving those people into the community.” They are still in an institution, even if you call those houses “group homes” or “shared apartments.” There are also other ways to disguise an institution as HCBS or make HCBS into an institution.

As the Autistic Self Advocacy Network points out in their public comment on defining HCBS (which I highly recommend), denying someone housing unless they agree to receive certain services is something that makes a housing setting institutional. If someone doesn’t have a choice about what services they receive and they could get kicked out of their housing if they say no to certain services, then they obviously aren’t being supported to live independently, they are being threatened into compliance. ASAN also suggests that providers should not have the right to break rules about what HCBS is, just because they argue it is in the best interest of a particular disabled person. There should be some rules that can’t be broken, so that a disabled person’s supposed needs can’t be invoked to take away their freedoms (for example, the freedom to lock their door, have friends over, or decorate their living space).

I admit that I find policy stuff almost impossible to read and I’m guessing that is even more the case for the average person who has direct experience with institutionalization. But if you really think about this, it isn’t as complicated as it seems, and they really want to hear from disabled people. You should write in if you have something to say about how home and community-based settings should be defined, especially if you can write from your experiences or the experiences of disabled people you know.

28 June, 2012

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.

26 June, 2012

the split

Clayton and I talked about how he got really upset when I said that I hate men.

1. he said that he was partly upset because when I said I hated men he assumed I didn’t include him and he feels like people have always not counted him as a man because of his disability
2. also that it just hurt

I tried to talk about “the split” which is really what I am thinking of when I say I hate men. It is just a feeling of parts of you being in a really deep opposition to each other. For example on Saturday a really kind and friendly bad brains man (about twice my age) sat next to me on the bus and I loved that we talked and it made my whole day better but:

1. he asked me if he could sit next to me and I basically couldn’t say no
2. he kept referring to my looks
3. he made me take off my sunglasses so he could look at my eyes
4. he asked me if I had a boyfriend

This didn’t really bother me because he wasn’t trying to pressure me into giving him information so he could contact me. It didn’t feel the same as that. But it is an example of how I hate men anyway. Why did he feel like that was okay? Why was it so normal that I didn’t even feel bothered by any of it?

This is the split and it’s hard to tell how I feel about it because I want to treat everyone with charity and lovingkindness and be interested in people even if they do something I don’t agree with, even if they do something I think is terrible.

But sometimes I wonder what is me being charitable and what is me being railroaded and just putting up with people’s privilege.

In high school my best friend was this really sweet lovely kid who was also such a straight guy. He didn’t treat me bad for being gay like the other straight guys but he still said ridiculous stuff like that he thought people were just pretending to be gay for attention. I loved this boy and something I love about myself is that I am a person who could love him even though he did stuff like that.

But damn there is something a little strange in it and I occasionally get spitting mad when it occurs to me how calm I am.

Recently I said something horrible to a friend from a minority group I’m not part of. There are a lot of things wrong with what I said but the worst thing is that I didn’t feel instinctively that it was wrong the way I would if it was something that was hurtful to me. So she had to explain to me how bad it was.

She wasn’t mad. She was really sweet about it, and in her calmness, I’m guessing, was the split between her and me.

25 June, 2012

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.

13 June, 2012

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.

20 May, 2012

The Suicide Suck

(If reading this post makes you think you need to be worried about me, please read it again. I am just being honest about a possibility that exists for a lot of people.)

Death can feel like gravity. It can feel like you're killing time, but not waiting for anything. I've been going a long time without the Suicide Suck and it's a really nice feeling.

Maybe it's easier to blame something. Maybe it's easier to blame myself. The truth is I guess both things. I have a tender belly. I guess it's possible I got this way from too frequent wounding when I was a kid, that instead of toughening up I ended up constantly hanging on strings, but I might just have been born tender. The social justice movement to help me would just involve encouraging people to protect the tender-bellied among them. There's no obvious injustice that has caused every Suicide Suck of my life, but that doesn't mean that each one isn't a response to my environment.

It's weird because even though it appears for specific reasons, the reasons are different every time. The Suck is actually faceless, but it always looks like something. It's only lately that I realized there was only one lion, or rather, anti-lion.

Oh Suicide Suck. Maybe you will be the death of me, and it's weird to be thinking this in a completely Suck-free zone, at least a month's insulation between now and the last time I was in one. I feel so good. I mean plenty of the time I feel tired or angry, but normal-style, not the Suck, which is this kind of raging tearfulness bubbling up behind my eyes and advising me how to get rid of it.

But it will be back and I guess one time might be the last time and that's not so bad. We all have to go somehow and if my way is that way it doesn't negate everything that came before. After all fighting to live is a different kind of fight, because you only have to lose once. Adults who commit suicide have often spent years refusing to do so. It makes me mad that successful people who kill themselves end up being defined by killing themselves instead of the fact that they were able to become successful while wanting to kill themselves. If I ever get Sucked I want people to know that I had a chronic illness that was part of my personality but that the last minute of my life wasn't who I am.

03 May, 2012

    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.


    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.”


    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.

02 May, 2012


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.

10 April, 2012

Someone was telling me it's really hard to comment here unless you have a google account. I think I have it set on "account users including open ID" but it obviously hasn't worked out that way so I changed it so people can comment anonymously. I don't know if there is a crowd of anonymous people frothing to comment on this mostly abandoned blog or if I've just opened my heart to a world of spam, but this should be interesting.

01 April, 2012

I'm Spasticus Autisticus

I am a big, big lover of this song and I was going to just post it on Facebook as my reasonably uninvolved observance of Autism Acceptance Day. But I happened to find an interview with Ian Dury about the song, which disappointedly ended with him sort of apologizing for mentioning autism and saying it's probably "frightening" for parents. I never thought a dead guy could stomp on my heart so hard, but it was the 80s and there wasn't even what there is now in terms of Autistic-identified people who could have told him not to apologize. So I forgive you Ian Dury, like I could ever be mad at you for long.

The main thing about the interview was that he confirmed my gut interpretation of the song, which is what I really want to talk about here.

"On the single bag there's what's supposed to be an explanatory note, which is about my tribe being...knowing our racial creed and paying no heed to such things...it can be rich or poor, disablement can get anybody. It was really about Spasticus being a slave who wished to be free, and I put at the bottom 'We too are determined to be free.' And it's based on--the idea of Spasticus is based on a film called Spartacus which had Kirk Douglas in it, and at the end bit, they say 'Which one of you is Spartacus,' you know--'I'm Spartacus,' then they all go 'I'm Spartacus,' and they hung everybody that confessed."

I've been moving away a lot from identifying as Autistic, and probably not for good reasons, but just because I know professionals are on a mission to take it away from as many people as they can and it's hard for me to want to hold onto it when every time I tell anyone I have autism they seem determined to interrogate and confound the reality of my disabled life. So I've retreated into just being slow and crazy, which are words that are available for all people at no charge; or if I'm feeling a little more political I use old words like feebleminded or very new words like headcrip--again none of these words are technical terms, and aesthetically and emotionally that's a big part of their appeal.

But this worries me the same way the word queer has sometimes worried me. The problem with only identifying with something vaguely and choosing the word for your identity aesthetically is that there's strength in community, identity, and numbers, and if everyone is called something else it's hard to find and hold onto each other, to support each other and try and work together for the things that will benefit people like us.

I have always thought that one of the worst disadvantages disabled people face is how few disabled people there are. Don't get me wrong, there are shitloads of wheelchair users, people with LDs and DDs and MH conditions, D/deaf and blind people and HOH people and people with low vision, people who use crutches and canes, people who don't use anything but have to live differently because they live with chronic illnesses, and, you know, you know a lot of people like this and you can think of all the kinds of "people like this" I have neglected to mention.

But that's all we mostly are--people like this.

I've said there are two kinds of disability and you end up fighting yourself with either one. A person is stigmatized as disabled, seen as unworthy of the things he wants from life, and has to prove himself non-disabled in order to be his own person, no matter how much he may harm himself in the process by doing things he can't do. Or a person isn't considered disabled and has to do things she can't do because everyone expects her to do them and there is no support. It's a trap either way.

Both ways a disabled person is fighting not to be disabled. The second person might have a nostalgia for the stigmas and stereotypes of "visible" disability, because it seems better than getting no support or recognition, but ultimately she feels too guilty to try and get those things. Holy shit I'm tired. What I'm trying to say is, what do disabled people think about themselves?

Basically: they do not think they are disabled.

They either think of it as something they have "overcome" or "risen above" with their accomplishments or just their personality, or they think of it as something nasty and rude to mention, or they think of it as something they don't deserve to claim because their disability isn't real or isn't that bad, or they think of it as a word that, if they used it about themselves, would indicate that they're sad, that they're giving up.

This has real practical effects on "people like us," this nameless population. We're so fucking short on disabled writers, disabled scholars, disabled teachers, disabled staff, disabled activists, disabled doctors (imagine the DSM being written primarily by doctors with mental disabilities)--we're so fucking short on people who have an identity and loyalty to other disabled people. Because we all think the word disabled is bad for us! We all throw it away and when we do that, we have nothing because we only have ourself and whatever word we have for ourself--not disabled, just different; not disabled, just has trouble walking; just crazy, just stupid, just slow--just perfectly individual and unique and alone. But our people need armies and bodies of work.

If I was going to start one organization to help disabled people, its focus would be to help kids with disabilities meet adults who identify as disabled. I've thought this for a year or two and I don't think I have the skillset for that kind of thing but it does pull on me sometimes, because it's not that people like us aren't talented and tender and brave, but that we all hang separately.

Anyway. I'm Spasticus Autisticus, is what I'm trying to say.

14 March, 2012


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

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

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

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

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

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

09 March, 2012

I was going to try and write about this coherently and explain the specific reasons why my disability prevents me from driving but maybe I will do that another time. For now here is a cross-post from tumblr.

hate the assumption that everyone drives

I seriously see people argue that everyone drives/has to drive. um if you couldn’t drive because you would DIE, you would learn that there are other ways of getting around, but not only do they blow, other people constantly ignore or forget that you don’t drive! while I was trying to explain this situation to the scheduling person at my work, I tried to explain that it takes me FOUR HOURS to get to and from work, and she made a little wince face. yeah, sit on the bus for four hours a day and see if all you can say about that is a little wince face.

so here’s the deal, help me out here because I feel like these kind of rules aren’t always set in stone if you actually have a good reason, but like…I’m a supercrip mongoose and there’s nothing I’m worse at than explaining I’m in extreme circumstances. I’m probably going to write a letter and then it’s going to be like “oh just talk to her why did you write a letter lol” (I actually tried to write a letter originally but I got redirected to talking and the little wince face, yeah, NOT HAPPENING AGAIN)

if you have talked to me about my job you might have gotten the impression I hate it. I actually love my job, I have the same job as Hodor. let me rephrase—I love my job WHEN I’M AT WORK.

don’t love that I get paid to work 40 hours a week, but spend 20 more hours riding the bus, for a grand total of SIXTY HOURS. don’t love being home for only 12 hours in between two work nights—go to bed! sleep! wake up! eat and veg out for an hour, feed the mysterious homeless cat, get dressed, go back to work! if you are wondering how I manage showers I would advise you not to come too close to me.

if you talk to me at night when I am about to go to work, you would never get the impression that I love my job, because I fucking hate my job when I wake up at night and I can feel my short period of freedom immediately slipping away from me. I don’t hate work but I hate that I have no fucking time.

so, I was considering asking to work 3 12-hour shifts instead of 5 8-hour shifts. I knew some other people did it and it would save me 8 hours on the bus and give me longer periods of free time. but I didn’t really get around to asking because it wasn’t a huge deal and I didn’t want to change my routine so early.

then this thing starts happening where when I walk to work at night men follow me and stuff. one time this happens when I leave work to go to walgreens at 3 am, and this time other staff notice it because the guy drives into the parking lot to look for me and then drives away when security comes out.

so that morning 2 nurses from the day shift made me go sit in a room with them and gave me a talk about DON’T LEAVE THE PREMISES AT NIGHT, which I swear to God began, “Aw, did you think you were in trouble? Don’t worry, this is for your own good.” I don’t know how much more annoying they would be if they knew I have a disability, but when people don’t consciously know I am disabled they subconsciously perceive that I am 11. in this case, an 11-year-old who’s asking for it!

but stuff also happens to me when I am just walking to work, from the bus, when I have no choice! staff have also concern-trolled when they see me walking to work from the bus stop. “THIS ISN’T A SAFE NEIGHBORHOOD.” oh yeah you think?

anyway after the adventure with the guy in the parking lot, I’ve finally decided fuck this I want to start working 3 12-hour shifts and getting to work WHEN IT IS STILL LIGHT OUT PLEASE.

so…then they told me that only people who work on the independent living floor can have 12-hour shifts and people who work in LTC can only have 8-hour shifts. even though aides who technically work on the independent living floor get assigned to work in LTC all the time. that’s how I met so many people who have 12-hour shifts! so it’s clearly like, a policy/way of doing things and not the way things have to be.

God help me, the first thing I said was, “Oh, well can I work 16-hour shifts then?” and she was like “I’ll get back to you about that next week” and…yeah, fuck me, I would do it if they let me, but I’m still worried.

I was obviously totally unsuccessful at pulling at the heartstrings and explaining how extreme this situation is. I’m not crazy, right? this isn’t just me whimsically asking to work 12-hour shifts because I like the number 12. but…there I was bleating, “but my bus ride is 4 hours” and not hitting on the important ideas like, “MEN FOLLOWING ME IN CARS.”

so I’m probably going to write a letter, but yeah, advice is appreciated because the current form of the letter is pretty angry.

05 March, 2012


(The story in this post might be upsetting to some people because it involves trying to pressure someone into taking medication and judging them for not taking it.)

I feel like I shouldn't be posting right now because I should be sleeping and I'll be tired on the way to work, but I feel like I use the excuse of sleeping to avoid almost everything, like church, and I barely sleep anyway so here I go.

"They say an unhappy man wants distractions--something to take him out of himself. Only as a dog-tired man wants an extra blanket on a cold night; he'd rather lie there shivering than get up and find one."--CS Lewis, A Grief Observed

When we were freshmen Clayton and I had a friend, let's call her Annie. I don't know how much of this is 100% accurate but I don't think Annie reads this blog, so it's probably all right to just tell you how I remember it. Annie identified herself in conversations as someone who had a mental illness and sometimes hurt herself, and one day she casually told me that she probably should be on medication because she was at an age when the way her brain was was being solidified and if she didn't go on medication right now, she would always have problems. She told me this like it was funny and she didn't particularly care to do anything about it.

Clayton and I both have savior complexes and we made it a project to try and get Annie to go to student counseling. Never mind that he would later realize how fucked up he had gotten from the medication student counseling put him on, or that I've been virulently anti-medication of any kind since I was 16, to the extent that I would rather throw up from pain than take an Advil. For whatever reason we decided that we were right and Annie was wrong and we had to get her to go to counseling.

It was almost summer; Annie wanted to be outside when it was sunny so she could skateboard and hang out with her friends. Every day the two of us would descend on her and try to get her to go to counseling and she would say that she didn't want to go until it was dark. Student counseling closed at five in the evening so this was the same as saying she could never go. I remember how ridiculous and reckless Clayton and I thought she was, and how much we annoyed her.

Annie and I grew apart over the next three years but she is someone I admire a lot because she's so smart and interested in so many things. Sometimes it seems like she just has to think of something she'd like, and all the resources appear to make it happen. I found her hard to be friends with because she moved so fast--she would suggest doing something, I'd resist it because it went against my schedule, and by the time I started realizing I would like to do it she would already have left to begin it.

The point is though that a year or two ago I started really understanding how I could see Annie's decision as smart, not stupid. It got me through the last year and a half of college, trying to think that way--blinding myself to the big picture, trying to unfocus my eyes and look at seconds and colors. I couldn't do things right and I couldn't feel good a lot of the time so I stopped trying. I didn't fail. When I saw something in front of me that might make me feel good, I took it.

So for a long time I've been on that kind of track and I've realized how hard it is for someone outside to see why you don't listen to "reason." Why you'd rather ride in a car than worry about your problems taking care of yourself. Why you'd rather have fun smoking than figure out if you will let yourself live long enough to die of lung cancer. Why instead of constantly apologizing to yourself and everyone for not being more organized, you're making Kraft Macaroni and Cheese in a huge pot and watching YouTube videos with your roommate.

The thing I feel most clearly now is that it was none of my business what Annie did with her time. I'm not as clear on the rest of it--how being like Annie applies to me and how I should feel about it.

I found myself talking about Annie today. I was trying to argue why it's okay for me to be involved with men even though I am gay. I'm probably going to get upset writing about this because the conversation turned to an end that felt more permanent than usual. I know I was convincing him at the beginning. At some point it wasn't working anymore for me to say "we should live in the moment" and "I don't expect to ever have a family or a relationship with a woman, so we might as well try and feel as good as we can."

And I remembered, a few years ago I would have thought being with a guy was like throwing something in God's face, being too lazy and desperate for comfort to feel anything but the shadows of what I could feel. I would have thought it was the real thing or nothing, and even now it's hurting me to type that it's not the real thing, because I want it to be as good as the real thing when it's with a guy, but it's not and that's not my fault. And the boy wasn't hurt, he's the strangest, nicest boy--he was relieved.

The truth is it's very hard for me to work especially not being a driver, and it's really hard for me to live on my own, and the only people I talk to outside of work are men who try and bother me. Giving up smoking is a serious sacrifice not because of nicotine as much as the fact that I lose a reason people will talk to me. I'm really sad right now. Sorry if this is too much information, but I've been going back and forth on the Annie thing for such a long time, and I wanted to write about it. Not Annie herself because obviously she shouldn't have been on meds when she didn't want to be, but thinking about endgames vs. staying in the sunlight whenever I can.

The thing is I don't know if I ever felt so much this way since I was on meds myself in tenth grade. Every day I'd take stimulants and spend a few hours thinking everything was really special and important, not realizing how much I didn't notice or how fucked up everything had gotten. As the day went on I got sadder and sadder and the only thing that mattered to me was--guess what--the person I was dating, who I wasn't actually attracted to.

Towards the end of the drugs, in some sobbing state, I told my mom I wasn't happy. My mom saw me all amped and buzzed up on the way to school every morning after I downed my Wellbutrin and Adderall. She said, "But I see you happy every day."

I said, "but I'm not a happy person."

I built myself back up through the two depressing but somehow joyful last years of high school. I was a very sad but happy person by the time I turned eighteen. I'm not sure how lazy and distracted I must have gotten, to get so far off track--because yeah I have to look at the small things, but this has gotten small enough to seep into all of them.

I'm not a happy person.

And this is me telling God and myself that I'm going to get better.