I am working on a post about how much I hate this (not this particular post, but the whole discussion), but I got sidetracked by thinking about a particular intersection of sexism and ableism.

I don't think I'm the only person to have witnessed this series of events:

A young woman in a staff role encounters a developmentally disabled guy who "accidentally" touches her breasts, jokes about her being a stripper, jerks off in front of her, etc.

The woman is upset. She talks to a more experienced staff person, or to her supervisor, and is politely told to get over it.

Don't be upset, it's funny. He can't hurt you.

Don't be mad at him, feel sorry for him because he doesn't know any better.

When I talk about this I don't mean to imply that men with developmental disabilities sexually harass women more than other men. I'm also not sure that people's reactions are that different when it comes down to it. The staff/disabled power dynamic is just stacked on top of the idea that men should probably get to do whatever they want, so that both people are getting a shitty consolation prize for not having power.

I mean, what you tell a woman in this situation basically boils down to, "Why not be a good sport and let him have this one thing? At least you're not disabled."

bad brains making bad decisions

(from bad brains making bad decisions)

First off, it's really hard not to write about sex because:

1. The other day I read all the comments in an article about a British guy with an intellectual disability who had been ruled by a judge not to be qualified to have sex. Some of the comments were by people who had worked with people with ID, and were saying things like, "When people with ID have sex, they can't handle it emotionally and they go from partner to partner and get very upset."

2. When I was 15 or 16, I read this livejournal flamewar that I'll always remember. Basically, a woman who was into BDSM, who had kids with autism, suggested that people with autism shouldn't be doms because they wouldn't be able to tell if their partners didn't like what they were doing. Other people said that if this was an issue, the couple should use safewords; the woman replied that she didn't believe in safewords because you should be able to tell how the other person feels.

What do these two incidents tell us (besides that parents and staff are assholes and should never talk)? Well, one thing that stands out to me is that both people talking are implying that there's a standard everyone should meet in order to be able to do a certain thing. If you want to have sex, you have to not become distraught by it, or be reckless in entering into affairs and relationships. If you want to be a dom, you have to be able to tell if your partner doesn't like what you're doing, without them saying so.

But...for some reason, this standard is only being applied to people with disabilities.* No one is calling for immature and overemotional non-disabled people to be banned from having sex, and presumably the woman who was so concerned about autism and BDSM doesn't go around telling non-disabled couples that they shouldn't be doing BDSM if they happen to not be able to read each other's body language.

(*It should go without saying that I don't think either of these judgments about developmentally disabled people is true. But even if they were it still wouldn't be fair.)

By the way I was semi-joking because now I'm going to talk mostly as a staff person, oh noes. During training for my job at summer camp working with adults, we were being given a talk about making sure guys shave, or making sure you shave them if they can't do it. Our boss said, "Nothing makes me angrier than seeing a person with a disability walking down the street with a stain on their shirt and stubble."

But nothing makes me angrier than the idea that if a disabled person doesn't look conventionally put-together, that is a PROBLEM and they're not receiving adequate support.

Let's say a disabled guy gets out of bed in the morning and decides not to shave because he's lazy, or because he thinks stubble looks cool, or because he only shaves when he's going to be kissing his girlfriend that day (haha, double panic, disabled people who are lazy AND kiss). He puts on a stained shirt because even though it's stained, it has his favorite movie character on it, or it belonged to his brother who he really likes, or it's comfortable for someone with his particular sensory issues.

All good decisions. Well, not necessarily good decisions. I personally think stained clothes are 100% gross and would never wear them. But these are decisions that a non-disabled guy might make, and no one would seriously respond with, "Someone ought to be taking better care of him." Yes, this ties into the privilege checklist.

Dave Hingsburger made a post last week called Offering, respecting...a huge difference, in which he talked about the difference between "offering choices"--i.e., choosing the set of choices a person can choose between--and respecting any choices a person makes. "Relationships, yes ... kissing, no; movies, yes ... boozing, no; celery, yes ... smoking, no." To me, saying a person can either be cleanshaven or have a beard is offering choices; saying a person can have whatever kind of facial hair they want is respecting choices.

As I was thinking about this I started thinking...well, for me as a staff person there's probably a limit. I mean, if someone never wanted to brush their teeth I would make that very difficult for them. Which I was thinking made sense, because brushing your teeth is just...well, it's not just about how you look, you have to do it.

But then I remembered when my friend found out that her non-disabled boyfriend hadn't brushed his teeth in weeks. Her reaction (and mine) was, "That's gross," but neither of us thought that someone else should start making him brush his teeth. I think there's a very small number of things that non-disabled people could do to get the reaction, "Someone else should be taking care of you because your actions are so incorrect." Most of the examples I can think of have to do with not eating, self-injury and suicide attempts, and addictions.

One of the commenters on Dave Hingsburger's post did bring up the issue of people having preferences in the short term that don't fit into their long-term plans, which I think is important. I just feel weird about brushing teeth now.

from June 2009

[I found this on my old livejournal, it's quite different from how I feel about things now but I thought it might be interesting.]

Liz called me yesterday because she was bored.

I'm accidentally rereading my favorite book, Send in the Idiots by Kamran Nazeer. I just accidentally reread it all the time; whenever I see it I kind of fall into it. I read it for the first time two and a half years ago and it's what made me interested in working with special needs people, which I'm now convinced that I want to do forever. A guy who was diagnosed with classic autism as a kid, and has improved to the point that he's pretty much normal, profiles other autistic kids from his childhood school. The people he profiles are all verbal and have attained different levels of "being better"--one is in a relationship, three have jobs, one lives alone, one doesn't "look" autistic to other people. They all have coping mechanisms they use to manage their autism, some more unusual than others, and Nazeer wanders off into long explorations of why these mechanisms are necessary, what they do, and which ones he uses himself. Actually he wanders off into long explorations of everything so that, for example, we get a discussion of the word "genius" and how it's used to excuse people's bad behavior, and whether the purpose of a conversation is to express what you think. So it's not just a book about being autistic, it's a book about being human, from an autistic perspective.

Maybe because I've been reading the book I kept talking to Liz about putting up a front. She kept asking me doesn't it bother me, but I can't really imagine another way of being. When I started figuring this out a few years ago, I feel like that's when I grew up. Like three years ago: I have trouble putting words together, fast, in the right ways. And I have trouble talking or reacting in what looks like a normal way, or figuring out how to react at all. So I figured out that when I was looking for an emotion, I'd choose "excited." I couldn't buy things before because I didn't know what to do while I was waiting for the thing to be rung up. Then I figured out I could act excited about what I was buying, and it went from there.

So now I have this whole conception of my personality: young, excited, spacey, stoned, random giggling, weird questions. It doesn't involve doing things I would never do, I guess, but it does try to put them in a palatable Manic Pixie Dream Girl package because I feel like that's the only acceptable way for a girl to be weird. And also, if I seem like this cute kid who is really overwhelmed by things, then people will be more likely to make allowances for me, whereas if I was an adult who was really smart and intense and could be sort of angry and nasty, like most people, and still needed people to make allowances for me--well, then it wouldn't be cute anymore. Once I have a negative interaction with someone, I feel like they know how awful I am. I don't feel like I can be both a negative person and a person who sometimes needs to be treated like a child.

Something that really bothers me is when people think that I'm immature. I understand why, it's the obvious reaction to a person who acts like I do. But I wish people could understand but this was the only way of synthesizing my AS into a reasonably acceptable personality, and that when I started acting like a kid, that's when I grew up.

disability services are not accessible!

Hello. I'm a person who attends college. I'm also a disabled person, oh my gosh. I was hoping to talk to you today about the subject of, "DISABILITY SERVICES ARE NOT ACCESSIBLE."

Basically, the reason I found myself wanting to talk about this is because, you know, sometimes I take classes--being in college--and if I mention to my professor that I'm disabled, or...you know, either as like, "I'm having trouble with this because I have a disability that affects me in this way," or just in a way that, like, isn't related to academics but is just like, "I think I responded to this story this way because I'm disabled," I don't know...

So basically, you do this and then the professor will be like, "Well, like, if you need any accommodations, we should...you know, you should go to the disability services office and we'll get you some accommodations." They say this to be helpful. And, um, sometimes on the first day of class, you get the syllabus and if the professor is, like, a really sensitive professor they'll have written, like, "Students with disabilities, um, please contact the disability services office if you need accommodations." So, um, at this point, I completely give up on ever being able to get any kind of support from this professor as a disabled student, because disability services is so awful. I basically need disability services like I need a hole in the head--actually, I mean, not even as much.

So, what are my problems with disability services? It seems like they would be really great--they make college accessible for disabled students.

Um...okay. My first problem is...I got this pen so I can make little signs. Okay. My first problem is, "DOCUMENTATION." This means that...well, basically the way it works is that if you have a disability and you're in college and you want accommodations, you can't just say "I'm disabled," you have to bring in a diagnosis of your disability that is from the past three to five years.

So, um, this might seem like it makes sense--disabled people are always going to the doctor and getting diagnosed all the time! But, actually, um, it doesn't make that much sense because that's not actually true. Like, some people, they might be diagnosed with their disability when they're like ten and it's not a disability that changes, so, um, they don't ever get diagnosed with it again. So then they're like eighteen and they're in college and they're not eligible for accommodations because they don't have a recent enough diagnosis.

So, basically, I guess the reaction that a lot of people would have would be, "Well, so, get another diagnosis." Um...I guess, number one, is, like, yes, some people could do that but why is it necessary if it's a disability that doesn't normally change? And, number two, like, that actually takes a lot of time. It's kind of hard to go and do that when you're in college. And, number three, that actually takes a lot of money. My family has a lot of money--I can go and get another diagnosis if I'm told that I have to get one to have something that I need. Um, other people's families wouldn't be able to pay for that, so it's actually kind of a class bias in disability services.

Another thing I have about documentation is just that I don't necessarily understand the point of it in every case. Like, I think, hypothetically you could make some argument about how people are going to pretend to be disabled for like the benefits they get from it 'cause being disabled is extra fun. Like, I guess you could say someone is going to pretend to have some kind of kind of, like, chronic illness so they can have their own room or something like that. I don't know. I'm sure you can think of examples.

But a lot of the time there isn't really any arguable benefit for getting accommodations that you don't need. But...you know, if someone says they want to take a test in a different room for, I don't know, anxiety reasons, or, like, they're easily distracted, or, like, anything...how could taking a test in a different room, um, actually make any difference to someone who didn't actually need to do it? Like, if anyone goes and takes a test in a different room, it doesn't make them do better on the test unless that's actually something that they needed in the first place.

So, um, it basically bothers me because, as I'm going to go into, I can't help but feel that disability services almost has a hatred of disabled people because it's, like, this constant assumption that we must be lying and that we should do all this work to prove that we're not lying, which brings me to my second point which I'll just call, "ALL THIS WORK."

So, um, okay. Let's say I'm in class. I'm disabled and I realize that I would do better with a particular accommodation. Um...so let's say I tell someone that I need this accommodation. Whose responsibility is it that I get this accommodation and therefore, um, my schoolwork is just as accessible to me as a it is to non-disabled kids? Do you think that it would be my professor who is being paid to teach all the students, or do you think that it would be the disability services office who is also being paid to make college accessible to disabled students? Well, I'm going to read you something awesome which I found on the St. Petersburg College disability services website. I think it really just like sums up the whole attitude.

"Colleges and universities have no responsibility to identify or seek out students with disabilities. It is the student's responsibility to make his or her disability known to the proper individuals, to provide correct and current paperwork documenting the disability, and to request accommodation personally"--I really want to go and talk about this in a minute.

But anyway...yeah. It's our responsibility. All the time. I don't know if you know anything about being, um, disabled, but sometimes, like, it's really hard to do anything, and things that other people think of as being very normal, like, may be, like, pretty, really hard for you. So, it may, all the time, be kind of like going around and carrying, I don't know, a really, really giant heavy bag that no one else is carrying and you're expected to do everything the same as them anyway. So, I guess disability services felt that, like, one bag isn't enough, so they have to add a second bag of making you be the one who has to go through all of the effort to get accommodations instead of them just doing it--which it seems like would be their job, but no.

So, um, what do you have to do? You have to figure out what accommodation you need, you have to go to disability services--or maybe you go to your professor first, I don't know--um, you get your d--you get your documentation, which may take a lot of steps if you don't have documentation, but, um, you get your recent documentation, and you meet with your professor...and also, sometimes you have to keep doing this over and over again when you've already done it.

For example, I have a friend who had to take a test in a separate room, so every single time that she had a test in the class she had to bring a form to the professor for him to sign saying that it was okay for her to take a test in another room. So, basically because of the basic, like, cognitive problems that she had going on at the time she couldn't actually go to the professor and get him to sign the form. She couldn't remember or focus enough to do it. So she basically didn't get her accommodations because she was made to do all the work and she wasn't actually able to do it. So...it just doesn't really seem very fair I guess when someone is already dealing with things, and when someone, besides, is a student, and when someone else is doing this as their job, that they can't just do some things for you.

Um, a particular thing is when you're supposed to personally go to your professor and tell them about your disability and what accommodations you need. For some people this isn't really possible. In fact...yeah. For example, let's say someone has an anxiety disorder and they don't want to go talk to someone about it. Let's say someone has any kind of disability that is kind of stigmatized and they don't always like to go around telling people about it.

(break)

Sorry, my roommate was going to the bathroom and I didn't want that to be in the video.

Um yeah so basically there are various reasons that a person might not want to be able to go to a professor and start telling them about their disability, or that it might be very difficult for them to do so, but they're still required to do it. And this ties into what I was saying before--basically that disability services kind of seems to hate disabled students, because, um, even though things are already kind of hard, we're basically supposed to do all this extra work just to be treated the same.

Um, yeah, shit, what was my third thing?

I guess what I was going to say--I don't need to write it down. I'm probably wrong. I probably do need to write it down. But I was going to talk about, like, surprises. Basically disability services has this really cut-and-dry view of disability where you always know what you need. So, um, you know, if someone needs extra time to take a test, they'll always know that that's what they need. If someone needs...I don't know. You don't really need that many examples.

Basically, you know, someone's supposed to be able to know before they even start the semester what kind of accommodations they're going to need, and, you know there can't be any surprises. But...living with a disability, there are a lot of surprises. And one reason this is is just because of...I guess because of the general sort of complexity of, like...it's not always that you can't do something completely, but that for a lot of people it's that you can't do something sometimes or it's harder for you to do something.

So, this means that, like, you know, you might not ask for an accommodation on, like, a paper because you don't feel that you're...like, maybe you have, like, a reading disability, but you don't feel like you're so affected that you won't be able to work really hard and do this one paper. But then the paper comes around and you're like really super tired or, like, you have like three papers and it takes you so long to do this that you just can't do all of it, so you just don't do one of your papers. There's basically no way in hell that you could go at the last minute and be like, "Hey, can I have a disability accommodation? Because of my disability, I can't do all these papers at the same time." And...you know. That wouldn't be seen as real.

Something else, kind of an in-between issue, but something that's always personally bothered me is that, you know...if, for cognitive reasons, I cannot do something in class, like...I'm not even saying that I want to get away with that and have it not affect my grade. But I would appreciate it, I guess, if the professor doesn't decide that I don't care about their class and start being really nasty to me, which has happened; and, um, I don't know, I guess I wish that there was some way for disability services to actually be involved in issues when someone is either being discriminated against because of their disability or in which, like, professors are misunderstanding things that happened because of the person's disability--because if you're in a class with a professor that like really hates you it can make it really hard to succeed because you don't ever get any support or help from them.

Shit my roommate's dropping stuff and I know I'm gonna get really confused in a minute. I guess that was basically the whole point I was making, though. Basically, no room for clearing up misconceptions about disability--basically no room for anything relating to prejudice against disability--especially because disability services is extremely in the medical model of disability, in which everything is about the disabled person and basically it's the disabled person's fault that things don't work for them. Um, that's actually like, for me, I would kind of say that's what the whole thing is. That's what it feels like. The whole thing is about how it's the disabled person's fault and they should feel very very bad and the only way they can make up for causing such a problem is by doing all this extra work and getting their documentation together and shit.

What else did I have to say? Let's find out.

Shit--you know, it's really too bad, because I made another video about this and I said something so smart and I can't remember what it is.

So I guess you might be asking, what is something else that you could do, besides disability services--for example, if you are a professor, how could you help? Um...do it yourself?

Like...there's probably some things, I assume, are probably against the law. But there are other things that you can just do, and I know this because one time, for me, a professor let me take an exam in a separate room for emotional reasons, which I explained to him, which he accepted without me having any documentation because he was a really good person and he knew that there wasn't a reason that I would need that accommodation unless I actually needed it.

Um, there's things like that. There's things like trying to make your class universally accessible. What universal design means, basically, is that instead of making something so that only non-disabled people can access it and then, like, very long-sufferingly, like, making a tiny ramp for a disabled person to get in...you just make everything so as many people can do it as possible. So when you're designing your class, just think about different ways that people might need to access the information.

Or, you know, if someone's in class, just write on the syllabus if they're having trouble with something because of their disability, they can just talk to you. You don't need to have the whole part about "go to disability services," because you don't know what that means, so just say that they could talk to you, and then people will actually think that you get it, because you actually will.

Um, yeah, that's basically it. Sorry I can't remember the amazing thing that I said in my video that I made of this the other day.

(break)

Guess what? I just went back and looked at my other video and I found what I was going to say. I was going to say something about--wait--"BEING AN ADULT AND DEVELOPING GOOD SELF-ADVOCACY SKILLS."

So, this is something I have seen. When disability services people are being criticized for the fact that they basically make disabled students do all the work to get their services, they'll usually be like, "Well, we're actually teaching our students to be responsible, take initiative, and develop good self-advocacy skills." Well, this sounds nice, especially because a lot of the time disabled people are treated as being children, or treated as being incompetent and needing people to do everything for us, which obviously isn't a good thing. So, like, maybe first off it sounds kind of good when they're saying, "Oh, we're gonna make you do things for yourself." But actually, if you say that you're treating someone like an adult, but they're actually the only person who's being made to behave that way, then you're not really treating them equally.

Because, when you're in college, you aren't exactly being treated like an adult--like, no one is. You basically have someone kind of taking care of a lot of the details of your housing for you, a lot of the details of your eating, depending on the housing and eating decisions that you make, but you have a lot of people doing stuff for you.

And, if you're not disabled, your classes just are accessible to someone like you automatically and you don't have to do anything. So, if someone is disabled, and suddenly instead of doing it for them, you know, given the fact that they're a young adult and maybe they still need some support and can't do everything on their own, you say that they have to do it all on their own, because they need to get mature and get self-advocacy skills, you're actually holding them to a different standard from other students. Which is not fair, actually, so don't do it.

good brains wearing clothes

1. I can wear clothes that don't match (mismatched patterns, sneakers with a dress, pajamas in the daytime) and people will perceive this as an expression of my style rather than thinking that I don't know any better, or that my parents or guardians aren't taking good care of me.

2. I can go outside with messy hair, messy clothes, or a half-grown beard, and people will perceive this as an expression of my style, or lack of caring, rather than thinking that I don't know any better, or that my parents or guardians aren't taking good care of me.

3. If I am perceived as female and I don't shave, people will perceive this as an expression of my politics, or lack of caring, or gender expression, rather than thinking that I don't know any better, or that my parents or guardians aren't taking good care of me.

4. If I have a "childish" hairstyle (pigtails or braids, very long hair, a big cloud of curly hair) or if I wear clothes with children's cartoons on them, people will perceive this as an expression of my sense of humor, aesthetics, or interests, rather than thinking that I am like a child, or that my parents or guardians want me to be a child.

5. If I dress extremely nicely and formally, I don't feel like this is something I have to do to compensate for my disability.

(ETA: can someone explain lol_meme to me? I'm so confused right now.)

Shelly was still thirteen years old

In 1981, I was employed to teach a sailing course for individuals with disabilities. In an attempt to recruit new students, we visited several segregated living accommodations for people with physical disabilities. When we entered one "facility," I recognized a young woman whom I shall refer to as Shelly. Shelly and I had come to know each other while we were in a segregated public school and had become close friends. She had cerebral palsy. and was an intelligent, perceptive girl who had a dry and biting sense of humor. Together we had talked about what it was like to be handicapped, we laughed about how people reacted to us and shared many of the common ironies and frustrations.

After completing Grade Seven, I was integrated into a regular school and from there continued on into a secondary school, and then entered University. Shelly had continued her education in various segregated settings, eventually moving into a segregated residence. Shelly and I had parted when we were both thirteen years old. I had not seen Shelly for ten years since that time. Consequently, I was overjoyed to see Shelly again. I sat down and began talking with her. In five minutes, I painfully realized that Shelly was still thirteen years old.

At that moment, the connection between segregation and death became apparent.

--Norman Kunc, Integration: Being Realistic Isn't Realistic

Generally I don't like the idea of mental age, and I certainly don't think that someone should be said to have "the mental age of a child" because of their IQ score or their interests or anything. But I find this passage to be really striking. This summer when I was in Vermont--which is a place where a lot of disabled people go to mainstream schools, hardly anyone seems to live in group homes, and there are no sheltered workshops--I started to feel a difference that often existed between middle-aged and elderly people with intellectual disabilities, and people in their teens, twenties, and early thirties. It didn't have to do with how well someone could talk or something like that. Though there were many outliers in both groups, younger people overall seemed less "compliant" and seemed to have stronger interests. I discussed these two kinds of people in my Mark and David post, although in that post the two examples were the same age.

Maybe the more compliant people with less strong personalities were not exactly like children. Maybe mental age is the wrong word to use. But there is a sense of something missing. I don't mean to talk tragically about those people; many of them are great. But I think some people with intellectual disabilities must have certain experiences when they are growing up, and you can feel the distance between them and people with ID who have simply grown up.

disabling queerness: Fingersmith

Before I start, there are two kinds of ASD (or generally mind-disabled) characters, besides those who are actually canonically identified as having ASD. There are people like Pete Campbell where I sincerely think that if they were a real person born in 2000, they would be diagnosed with ASD. Then there are people like River Tam from Firefly, who obviously doesn't literally have ASD or schizophrenia, because we know that her ASD/schizophrenic traits come from emotional trauma and brain injury. If I write something "reading" River as a person like me, I'm not trying to deny the canon of the show, but just saying that functionally, she is kind of like people with certain disabilities, and can be identified with/claimed by us.

The character Maud Lilly, from the book and movie Fingersmith, is the second kind of character; she comes off as being like a person with ASD because of her life experience. Although this isn't the reason I love the book and movie--they're just incredibly fantastic and creative--it is probably the reason I find the love story so affecting, because Maud's experience of infatuation is so much like mine.



If you are interested in watching the movie or reading the book Fingersmith, you should probably know that there's a big twist and it has to do with exactly what this post is about. I knew the twist beforehand and I still love the book and movie, but if you want to be surprised, you should stop reading here.

Okay. (I'm talking about the book, but the movie doesn't change any of the facts--it just doesn't focus in on Maud's adolescence and sexuality as much as the book.)

So Fingersmith is a gothic novel about a 19th-century teenage pickpocket, Sue, who is hired to scam a sheltered girl named Maud. Maud lives with her uncle in the country and would inherit a lot of money from him if she ever got married--but it seems like she never will get married because she's so isolated. Gentleman, a con artist, is planning on marrying her and then getting her labeled as "mad" and put in an institution so he can have her money.

Sue's job is to be Maud's maid, become friends with her, and do anything possible to get her to fall in love with Gentleman and elope with him. Sue narrates in the movie, "When I saw her I thought: 'This is going to be easy.'" Maud is very stiff and soft-spoken and has nightmares every night (during which she begs Sue not to leave her alone). Sue has grown up taking care of babies and young children, so despite her plans to hurt Maud she has an instinctive protective reaction to Maud's anxious, childlike nature.

Maud is "developmentally delayed"--I don't use this as a euphemism for intellectual disability, but as a term for something that most disabled young adults have, both because of disability and as a result of being sheltered and not learning to be independent. Maud is young for her age. She does not understand how to do a lot of things that most people her age know how to do.

Sue becomes very attached to Maud, and ends up kissing and having sex with her because Maud claims not to know how to have sex. But she doesn't know how to stop what she's doing, and the con continues as planned. In the days after Maud and Gentleman have gotten married, but before Maud is institutionalized, Sue becomes more and more distraught and depressed about betraying someone she loves, someone who is so innocent. Then Maud steals Sue's identity, and Sue is institutionalized as Maud Lilly. Sue realizes that Maud was actually working with Gentleman to scam Sue.

The twist of the story is that Maud isn't a "pigeon," the term Gentleman uses for an easily manipulated person. This is already a "fuck yeah" moment for disabled readers. But what's even cooler is that Maud wasn't faking very much. She really is developmentally delayed and she really does have nightmares, and she really is very stiff and impaired when it comes to other people. Nonetheless, she is calculating and capable of doing evil.

The unevenness of Maud's abilities, the fallacy inherent in categorizing her as "childlike" or "adultlike," is encapsulated by her knowledge of sex. In the second part of the book, which is narrated by Maud, we learn that her uncle collects pornographic writing and images, and she has been his secretary since she was a child. The servants in the house don't know what her uncle's library consists of, and became unsettled by Maud because she would use sexual terms at a young age; this led to her losing their motherly support, after which she began to bully and harass them. Her uncle's friends are attracted to Maud when they visit the house and she reads porn to them--they think of her as sexy, impure, and probably available, though of course she's never even kissed anyone. After Maud has scammed Sue and is living in London, she tries to get help from one of her uncle's friends, but he refuses to associate with her because of her reputation.

Maud can't be categorized as a virgin or a whore; she is physically and emotionally untouched, but seen as damaged goods because of her intellectual knowledge. To me, the most beautiful passages in the book are those describing Maud's attraction to Sue--her surprise at realizing that something she's very intellectually familiar with could actually happen to her; that sexuality isn't the boring, mildly disgusting thing she always thought it was.

After putting Sue in the institution, Maud realizes that she is in love with Sue and wants to save her. But it's very difficult for her to do anything because she has no common sense or understanding of how to move around in a city. I won't summarize the rest of the book, but don't worry, everything turns out awesome and there are some more twists. I basically just want to talk about what a great mind-disabled character Maud is. She comes off at first as being completely guileless and unable to do anything. Then we find out that isn't true at all and she's a force to be reckoned with, but her disability doesn't just disappear; there really are things she can't do. And she's neither good or evil, she's both, just like all the other characters.

I want to develop this more but whatever

So one session at camp, two of my campers were named Mark* and David. They were both men in their forties who had Down Syndrome and had lived with their parents all their lives (well, David had just moved to what his parents called "a residence," a few days before camp started).

Mark's mom gave me a long talk about how slow Mark was, and so on. She stage-whispered that she had really spoiled him. But finally, she reassured me that Mark was "a fine young man."

WTF?

David's mom said similar things, I guess, about him being slow, but she didn't make me uncomfortable the way Mark's mom did. And she didn't refer to her middle-aged son as a young man.

This was the session that my brain completely shat out because I was working with people too much like me. I guess that technically David and Mark had similar problems. But when David was getting dressed and he spaced out, it was because he started playing with his shoe or very slowly organizing all his '80s TV show theme song tapes. Mark was just sitting there, staring at nothing and waiting.

David didn't like swimming, and when I asked him if he wanted to go swimming, he would say no. Mark would sort of shrug and smile shyly to himself and eventually say something that sounded like an agreement. Then he wouldn't change into his bathing suit and would eventually tell me that he was going to go swimming tomorrow, not today.

I was really stressed because they were both people who required a lot of focus on my part, but emotionally, David was much easier to take. I mean we had problems about a lot of things, but they were the kind of problems you want to have, if you know what I mean. He wanted to stay up and listen to music instead of going to bed. He wanted to make a speech to the whole camp about the circumstances of Michael Jackson's death. He got pissed because he had a really specific idea of what he wanted his Halloween Dance costume to look like, and we couldn't find clothes that fit his requirements.

Like most people who have been alive for four decades, David had preferences and habits. He was a fan of many TV shows, including M.A.S.H. and Dark Shadows, and he would tell me all about them (at my request). He hated to put his head under the water when he was taking a shower. He needed to sleep with a light on. Some of David's personality traits clashed with mine (I find it really hard to sleep with a light on) but, you know, that's what people are like.

Mark just agreed to everything with a sweet smile. He would very occasionally have bursts of energy where he would make really elaborate jokes I didn't understand. I acted really excited about these things because I wanted to encourage him to express himself more, and in fact I did find this stuff enjoyable, but it didn't happen that much.

I also felt uncomfortable because Mark seemed really detached from reality. For example he seemed to think that if he wrote down a schedule of what activities he thought should happen every day, that's what would actually happen. Because of the fact that he was hard to understand, I feel like I could totally be wrong in how I'm interpreting this--maybe it was just another joke--but I know that I was once a person who was very confused about what was coming in from the outside world, and equally confused about how I could affect it. In retrospect that was a scary time and I'm really glad I understand things better now and feel more in control. So it is upsetting to me to think that maybe Mark was stuck in that kind of experience of not really knowing how to affect his life.

I really, really hated living with Mark. On a day-to-day level, I just was frustrated because it was so hard to do daily living stuff with him like getting dressed and brushing teeth, but much deeper than that was the fact that he seemed so distant and, sometimes, submissive to the point of blankness. He made me incredibly uncomfortable, and I felt guilty for being frustrated with him, and guilty that I couldn't help him.

I complained to other counselors about the fact that Mark's mom called him a fine young man. If he'd lived with someone who thought he was a child, that could be why he hadn't developed the strong personality that David had. "No," another counselor replied, "it makes sense for her to say that. They are children. Especially people with Down Syndrome--their faces look so young. How old do you think my camper Josh is?" I guessed that Josh was twenty and the other counselor replied, "He's thirty," as if that proved something. I think he also told me not to be so judgmental of Mark's parents.

However, if Mark was a child, I wasn't clear on why he was writing letters to women asking them to "sleep in my bed please," sneaking into my bed when I was out, showing me this picture in the middle of the night [NOT SAFE FOR WORK NOT SAFE FOR WORK and imagine what it's like to be shown that by someone you've just met when you are half asleep], telling me I had nice legs, trying to kiss female counselors and campers, and other stuff that I don't want to talk about here. All this really freaked me out. Mark was not the only camper who ever acted like that, but there's a difference between someone who's very outgoing, and sometimes crosses the line into sexually inappropriate behavior, and someone who rarely initiates any contact with other people except when they are sexually harassing them. It made me scared of being around Mark--not necessarily scared about what he might say or do, but just scared about the way he was, and feeling like I was failing him because I couldn't understand him or connect with him.

Mark's mom was the only parent or guardian who ever tried to give me a tip when she picked him up from camp. We weren't supposed to take tips, and maybe there were one or two campers I would have taken a tip for, but I gave the money back without hesitating. I didn't feel like I had done a good job with Mark. I felt like I'd done a really shitty job. Mark's mom got mad at me and told me that "the girl last year took it--why won't you?" I tried to say that I already got a paycheck, and I was just doing my job. Finally Mark's mom gave up, got in the car with him and his dad, and said, "Well, I'll just give it to charity then."

"You should give it to something Mark likes," I mumbled as she drove away.

more thoughts about disability and presentation

(this is sort of part two of squandering slack)

I'll spare you a long description of my mom's problems with the way I look and dress. Besides, I write about them all the time. But it is just sort of a clusterfuck in the summer because my mom has logic on her side, i.e. it isn't reasonable to wear jeans in the summer, especially if you get easily overheated like I do and tend to throw up and have headaches. So my mom picks out the kind of pants she thinks I should wear, which are usually knee-length, and then puts me under pressure to wear them. And I go along with it sometimes even though I really want to keep wearing the same pants I wear all year. But I really don't like those other pants at all.

This summer the best thing ever happened though, because I got several pairs of athletic shorts to wear at camp, and I realized I liked them even better than jeans, and I also realized from observing other counselors that it is pretty standard to wear shorts in the summer and that's actually a more common thing to do than wearing knee-length pants. So I realized that I didn't have to feel awkward about not wanting to wear capris and they probably actually looked weirder than jeans.

You can spare me any shit about how I shouldn't care whether my clothes look weird or not. I can care if I want. And in a lot of ways I don't care, for example I could wear short shorts in order to look more standard but I like athletic shorts better. But it's just sort of galling to be wearing the capris and feel like I not only look different, but I look like I'm not in charge of how I dress.

It sort of reminds me of when I was younger and my mom would always try to tell me what I should say to other kids when problems arose. Even though the things I said really screwed me over, I wouldn't use her scripts either. I knew that her word choice was slightly off and would sound weird coming out of a 12-year-old's mouth. I feel like normal people don't think about word choice, but when they are kids they do pick out people with unusual word choice and make fun of them, so I was very aware that I already didn't use the right words all the time. If I used the wrong words I wanted them to be my own, even if they were catastrophic ones.

I was getting strangely and incoherently annoyed in an attempt to explain to my friend why it makes me mad to see a thirty-year-old disabled woman in the same high-waisted pants that her mother wears. Those pants look normal on the mother, but on the daughter they "look disabled." Except that when I say that, it sounds like I'm saying that the daughter should be dressed in order to pass, and that's not what I mean. I just feel like, whether or not a person is obviously disabled, there's a certain style of dressing that is prevalent among disabled people and makes the person look like they didn't pick out their clothes themselves. It can look very "nice"--very clean and neat--but it looks awful to me.

When I was 14, my mom forbid me to wear sneakers and skirts together, because she said it would make me look like I was mentally ill. I guess wearing combinations that aren't considered to go together, or doing other things that seem over-the-top, "looks disabled" in a different way, but to me, that way looks really good. I know a few people with ID who always wear a lot of necklaces and medals and to me that is the opposite of the other kind of looking disabled--disability is visible, but it's visible because the person is making different choices from the choices someone else their age would make, not because an authority figure is making those choices for them.

Am I making sense? I always feel embarrassed when this turns into a blog about arguing with my mom.