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.