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.

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.

Hospice

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

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

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

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

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

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

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.

Annie

(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.

I gave up smoking for Lent and in the middle of my drowsy, headachey Ash Wednesday morning it occurred to me to write about something I've noticed. Basically, some people are weird about smoking. I'm hesitant to write about this because I feel like someone will get offended, so please can you just read this in good faith.

I don't think people should be allowed to nonconsensually expose other people to secondhand smoke, so I am not interested in reading responses about how my argument is invalid because of secondhand smoke. I'm concerned about stuff like employers having a policy of not hiring smokers. If you want to relate it to benefits I can explain why it's not about that. It's also not about having a smoke-free workplace, since that's easy to maintain without not hiring smokers. Clearly, this kind of policy is about a group of people who do something unhealthy.

This subject is a bit close to my heart since I interviewed for my current job 2 weeks before they stopped hiring smokers, and also because I think smoking was a factor in losing my camp job. I didn't break any rules related to smoking, but my supervisors just had a different attitude toward me as a person.

I think it is weird that doing something unhealthy can turn a person into Bad News. When I read articles about places that don't hire smokers, they talk about it like good citizenship--not that they want healthy employees, but that they want employees who are "role models" and "set a good example." In addition to implying that smokers can be identified by sight when not smoking, this attitude equates goodness with striving to be physically healthy. Not that this is a new thing--observe fat hatred, or hatred of any disabled person who doesn't seem to be trying hard enough to not be disabled (i.e. all of us)--but I still think it's interesting.

Smoking is a sneaky subject because it can be categorized as a choice. But it is kind of an illness even if it's a chosen one. If people are addicted, that is an illness. If it's not an addiction, it still results in physical weakness and accelerated death. So I think smoking is cool because it shows you how people feel about sickness without those feelings being camouflaged by the propriety and pity they feel required to maintain when the person "hasn't chosen to be sick."

In American Horror Story, a bully beats up the main character Violet because the girl's grandmother died of lung cancer and Violet was smoking in a public place. I love this scene because I had a less Ryan Murphy version of the same experience. No violence I mean. But I had the sense that someone hated me because someone they loved died from what I was doing.

How does the construction of smokers as "our" enemies make sense? Because we might start liking them and then they might die? Because our grandmother died and we kind of want to beat her up for "bringing it on herself," but we can't because we love her and she's dead, so instead we will treat other people like her in ways we would never have wanted her to be treated?

If someone is to blame for the death of a smoker, and you don't want to blame the individual smoker or settle down to blaming no one, why don't you just blame tobacco companies for making cigarettes delicious and awesome? In theory people who hate smoking would probably say they do blame tobacco companies, but they don't really walk the walk. If smokers are the sheep/pawns of tobacco companies, why should we be denied jobs for something they did to us?

(I don't have anything against tobacco companies but I do think they're the only logical villain if you want to consider smokers victims or feel sorry for us.)

I feel like it's perverse not to care if you live a long time. Well, actually some dangerous things like driving are okay, but there are certain ways of shortening your life that are wrong. Smoking is wrong because it's like smacking God in the face, except atheists are just as offended. I don't know that it's not a more hostile version of the gooey/horrified reactions people have to quicker forms of self-injury. Do we really need ribbons and bracelets to draw attention to the fact that people put sharp stuff inside themselves and It's Serious?

I was going to say something about nonsmokers who have group discussions where they pat each other on the back for not liking the smell of smoke and thinking that people who smoke are dumb (outside of these conversations, some of the same people are totally happy to be around smoke) but this tangent is pulling on me. I feel like conventional self-injury is a bad sign and a bad solution, for me, but I think it is weird that a lot of people would want to gasp and call me a "cutter" (designating me as having a condition that puts me in a whole other class of people, a whole new noun) but wouldn't gasp about me ignoring mental or physical health problems, or not getting enough sleep, which can cause way more permanent damage than just palling around with tape dispensers/soup cans.

But anyway smoking? Probably one of the grosser things in the world but it still bothers me that I feel like it's become kind of this symbol/scapegoat of people who are ill/bad/ill-because-they're-bad. We're like an anthropomorphization of death you can yell at.

Note: I'm not interested in hearing about how you feel when you're around people who are smoking right now or have just been smoking. This post is about attitudes toward smokers that persist even when we currently aren't smoking and/or don't smell like smoke.

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

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

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

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

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

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

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

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

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