J. Cole's "autism lyric"

This really just blends into the woodwork but since I happened to end up complaining about it in real life, here is a post about J. Cole’s apology for his verse in Drake’s “Jodeci Freestyle,” where he used “autistic, retarded” as an insult.

So, the apology isn’t great anyway, but the big thing I noticed is that he only talked about autism--he didn’t apologize to people with intellectual disabilities or their families, even though he used the word “retarded.”  I can’t really blame J. Cole for this because it seems like no one told him.  For example, the Anna Kennedy/Anti-Bullying Alliance petition against the lyric specifically asked him to apologize to people with autism and our families, and did not mention the other PWD who are hurt by the R-word.

Yes, J. Cole is stupid for not realizing that he should be apologizing to all people with developmental disabilities, but how stupid are organizations and activists that actually focus on disability for not asking him to do that?

There was a time when all developmental disability was assumed to be intellectual disability and people were confused by the word autism.  Now the opposite seems to have happened--for example, when people find out that I work for someone who is nonspeaking, they immediately assume she has autism, instead of realizing that there are many disabilities that could cause someone to be nonspeaking. In general, people will often describe anyone with a developmental disability as being “autistic”--even though intellectual disability is the most common developmental disability!

It’s hard for me to articulate why this makes me so angry, but I think part of it is that it illuminates how most people don’t learn basic information about disabilities.  Right now autism is being blown up as some kind of dramatic health crisis so it’s the only developmental disability the average person knows about and the catch-all term for all disabilities.  It’s not so nice for people with autism to be treated like the four horsemen of the apocalypse, but it’s also terrible that people with intellectual disabilities are so ignored by the average person that J. Cole doesn’t even realize he used their diagnosis as an insult, and neither do autism advocates. (I’d love to say just autism parents, but I’ve seen some Autistic people who didn’t notice either.)

So about advocacy vs. self-advocacy. I don't really like the term self-advocacy. I think in one of my blogger profiles I have "not self-advocacy" listed among my interests. Why don't I like the term self-advocacy? Because I am not a self-advocate.

For example, when I was five I broke my leg. I was a talking person who had two parents and a caregiver, but it took a whole day before anyone realized my leg was broken. My personality hasn't changed much since then. I don't really know why I am not a self-advocate, but I'm just not.

A problem I have with the word self-advocacy used in a political context, which was pointed out by someone in comments at the Thinking Person's Guide to Autism, is that it implies the advocacy of disabled people is always very specifically about ourselves. It also strikes me as some kind of weird attempt to avoid saying disabled person, as per fucking usual. "Some parents of children with disabilities talk to SELF-ADVOCATES!" No, dude. Some parents of children with disabilities talk to people with disabilities. It's not some kind of obscure political group and/or cult.

I'm just someone who talks about ableism and happens to be a disabled person. I mean, it's not this totally disconnected "I write about ableism and if you must know I happen to have a disability." I think I notice and care about certain things because I am disabled, and that affects the way my writing is. But my disability doesn't equal my writing (or my advocacy if you want to call it that) and it always bothers me when someone seems to be interested in my writing because I have autism and not because of the content.

Also, as I've said, I just am not a self-advocate. It's a personal problem. People who can self-advocate but can't write a blog have a different set of abilities from me.

For months I have been intending to write about a guy I used to be staff for. Let's call him Ron. I don't know if any of my former coworkers read this blog, but anyone who worked with Ron will know who I'm talking about when I say that his writing is really hard to decipher and would not be served well by the blogging format. I also don't think he could have an abstract conversation about social justice.

But anyone who has worked with Ron has had this experience: you're on break, or you're walking by on your way to support someone else, or you're brushing your teeth in the morning and this really distinctive voice comes out of the stall: "Good morning Amanda. Would you like to wipe my butt and spray deodorant under my arms?"

I always found it hard not to reply: "Fuck yes!" Not because I have a big attachment to wiping people's butts but because someone like Ron is a real hero to me. So many people go through life not asking for what they need. I remember being awed when a blind hallmate walked into my dorm kitchen and said, "Are any of the burners free? Which one? Am I putting the pan on the right one? Okay, can someone give me the spatula?" Something I feel like I'd rather die than do--which, I'm sure, is part of the problem. So many people go through life not asking for what they need that I know the revolution, when it comes, will owe at least as much to brave people like Ron as to speechless but talkative people like me.

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.

the violence of nerdiness

(from Fear Claws)

more on this (about Chase from Runaways, some weak spoilers)

I was also thinking that Chase’s lack of nerdiness/intellectualism/intelligence (including the facts that he isn’t part of a subculture, doesn’t do well in school, and is often kind of dense and spacey) is an extremely important facet of his character, and that makes it especially unfortunate that Joss Whedon retconned him as nerdy. The conceit of Runaways is that all the main characters have parents who are a different type of supervillain, and when the kids find out, they team up to fight their parents. Chase’s parents are “mad scientists,” obviously the most intellectual type of supervillain (which Whedon himself portrayed as a hero in Dr. Horrible’s Sing-Along Blog, with the villain being a conventional hero, Captain Hammer, who is a stereotypical dumb jock–self-centered, stupid, sexist, and a bully of the nerdy Dr. Horrible). Although, like all the Runaways’ parents, they do evil with the goal of providing for their children, Chase’s parents are physically and emotionally abusive, and they are the only set of parents who are like this.

Although Chase fights with his parents and behaves rebelliously, he is written throughout Brian K. Vaughan’s run as having internalized the lessons he was taught by their abuse–basically, that he deserved to be abused because he wasn’t a good person, misbehaved, or was otherwise unsatisfactory. An amazingly painful moment, toward the end of BKV’s run, is Chase’s realization that he is “innocent” after all. (Amazingly painful because Chase wants to sacrifice an innocent soul to bring his dead friend back to life, so his realization causes him to plan his own death.) Chase’s parents frame their abuse of him in terms of “we’re smart, and you’re unsatisfactory and don’t know what is good for you, because you aren’t smart/intellectual.”

I started thinking about Chase again because my original post was called “isn’t that a cliche?” which is a quote from the first page Chase appears on. During an argument about Chase’s grades, his dad hits him and tells him he is a “dumb jock,” a “cliche.” Chase responds, “You’re a nerd who punches like a girl–isn’t that a cliche?” Which I think is really interesting because if you do read Chase’s dad through that lens, as a nerd who was bullied as a kid and wasn’t physically able to stand up for himself, and the violence that grew in him became his supervillainy…doesn’t that serve as a frame for his parenting? Does he have a childhood hatred of “dumb jocks,” which he takes out on his dumb jock son? It doesn’t matter if you “punch like a girl,” after all, if the person you’re punching is young and dependent on you.

So can I just say how much I love Brian K.Vaughan? He clearly isn’t mainstream or anti-nerd, as many of the positive characters are nerdy, but he also sees the potential violence in the idea that nerds are better than other people. In Y the Last Man he does a great job of portraying very diverse characters and the same is true for Runaways.

(The reason I’m categorizing this post as “disability” is that I think some disability culture, primarily Autistic culture, has this kind of nerd violence in it. Basically, autism is associated with nerdiness and intellectual achievement, and the people who hold this association think that intellect should redeem autism from the stigma of disability, or even the word disability. People who feel this way are prevented from experiencing solidarity with people who have autism but don’t have high intellectual achievement, or have intellectual disabilities, and they are prevented from experiencing general disability solidarity. Which is a huge problem in my opinion, and very upsetting.)

Fallacy Week: Form Over Function Fallacies

Hi guys it's FALLACY WEEK! Every day you get some fallacy action from a post I made a super long time ago at LOVE-NOS.

Form Over Function Fallacies
I guess that all fallacies of relevance kind of are form over function, but these fallacies are ones in which stuff that is just incredibly, incredibly content-free gets used to win an argument. Again, these are difficult to separate and define, and parts of them are familiar, so I won’t be overlong in describing them.

1. John has an intellectual disability. John and Mary are having an argument about something important to John, and he starts crying. Isaiah, who is also present, concludes that John is obviously too fragile to be thinking about this stuff or having these conversations, or is too childlike to understand the issues being discussed.
2. John and Mary are having an argument about something important to Mary, and she starts crying. John feels bad for being insensitive or being too fixed on a particular point of view. Or if he doesn’t feel bad automatically, Mary or Isaiah tells him that he should feel bad.
3. John has autism. He and Mary argue. Mary tells him that he is too fixed on his own point of view, because of his autism.
4. John can have many different developmental or psychiatric disabilities, but he usually has autism. He and Mary argue. Mary tells him that he can’t understand the experiences of other disabled people, or their families and staff, because his disability makes him insensitive and unempathetic.
5. The way John talks is unusual and/or impaired, and boy do Mary and Isaiah talk about that after he’s gone. He talks in a very rehearsed way or blanks out when asked a complicated question, so Mary and Isaiah figure that he’s either lying or has been trained by someone else and doesn’t really understand what he’s saying. He uses the wrong words a lot, or rambles, so he doesn’t really know what he’s talking about. He uses very simple words, so he isn’t being serious. Infinite examples.

Rebuttal:
I can’t really deconstruct these because they just are awful and if you don’t understand why, you never will. Anyway, it's the end of Fallacy Week! Go forth and argue.

Fallacy Week: The Shocking Behavior Fallacy & The Suddenly Specific Definition Fallacy

Hi guys it's FALLACY WEEK! Every day you get some fallacy action from a post I made a super long time ago at LOVE-NOS.

The Shocking Behavior Fallacy

MARY: My nephew Ralph has autism and it’s really sad. He insists on watching Thomas the Tank Engine every day, and he’s sixteen.
JOHN: Why is that sad? There’s nothing inherently wrong with an older person liking things that are aimed at kids. I feel like in our society, people label a lot of things as problems that aren’t actually problems.
MARY: That’s really insensitive. Ralph bites himself so badly that he has to go to the hospital.

Rebuttal:
John didn’t say that it’s not a problem to seriously hurt yourself, nor did he say that Ralph doesn’t have any problems. But Mary reacted as though he did say that, and now John is knocked off balance. He wonders, did he say that? How can he explain that that has nothing to do with what he was saying? Is there anything he can say now to avoid giving the impression that he thinks self-injury is okay?
In the Shocking Behavior Fallacy, you can use a shocking behavior to excuse something unrelated that you did to or said about the person who has the behavior. The fallacy functions by changing a very specific statement to a general one. Mary changed John’s specific statement–watching Thomas the Tank Engine is okay–to a very general statement–everything Ralph does is okay. Now she can prove John wrong by giving an example of something Ralph does that is not okay.

(Fun fact: This is actually one of the most dangerous fallacies in use. By equating one thing a person does with everything that person does, it creates a class of people about whose treatment no one is allowed to complain. Let’s change the example a little and say that Mary is a staff person working in an institution, and every time she sees Ralph trying to watch Thomas the Tank Engine she takes points away from him, which means that he doesn’t get to go on day trips. John thinks that Mary is micromanaging Ralph’s choices in an abusive way. Mary responds that Ralph has to be monitored closely and dealt with harshly because his problems are so severe; he bites himself, remember?
Professionals can fall into an inverse of the Shocking Behavior Fallacy, where instead of going from specific to general to shocking behavior, they go from shocking behavior to general to specific. Ralph has a really big problem, but instead of thinking of it as one problem, Mary starts thinking of it as who Ralph is. So whenever Mary sees Ralph doing something she doesn’t agree with, she responds as if he is biting himself. The results can be horrifying.)

The Suddenly Specific Definition Fallacy

JOHN: It bothers me that doctors tell pregnant women that people with Down Syndrome can’t count change. They advise women to abort people like me, when they don’t even know what someone with Down Syndrome can do.
MARY: But most people with Down Syndrome aren’t like you. Just think, it would be so hard to have a kid who could never live on their own.

Rebuttal:
In this fallacy, you tell a person with a disability that they can’t use their feelings or experiences to make a point about their disability, because you just made a new, more specific definition of the group of people being talked about-–a definition which no longer includes them. Mary has transformed John from someone who had authority on the subject, due to his experience, to someone whose experiences aren’t valid because he’s an exception.
Let’s briefly accept Mary’s new definition of someone with Down Syndrome-–a person who can never live on their own. It’s true, John could have some opinions about whether it’s wrong to abort such a person, but he can’t speak as someone from that particular group. But guess what? The prenatal test doesn’t measure whether someone could live on their own, it just measures whether they have Down Syndrome. If a fetus exactly like John is diagnosed with Down Syndrome, it doesn’t get a break because it’s John. Its mother’s doctor is just as likely to present the diagnosis as bad news, encourage an abortion, and list a bunch of things the child won’t be able to do that may or may not be true of the John-fetus in particular, or people with Down Syndrome in general. Being an exception gets the John-fetus absolutely nothing.
The reason the Suddenly Specific Definition Fallacy is a fallacy is because of its suddenness. Stuff goes along, people with a particular disability are getting discriminated against, mild and severe alike. Everyone’s welcome in the stigmatized group. Then someone says, “Hey, I have this disability and all these things you’re saying about my disability aren’t true.” Bam! Apply the Suddenly Specific Definition Fallacy and remove the person’s authority (they can keep the stigma).

(Fun fact: I’m sorry if the example comes off as melodramatic, but I’ve read a lot about this stuff and John is not exaggerating.)

What should I know about autism that I'm not learning from pop culture?

from my disability page here

I feel like American pop culture is obsessed with autism. It is obsessed with two kinds of autism: very severe autism, which it thinks is kids hitting their heads, and mild autism, which it thinks is people who act weird and are socially impaired. In America and some other places, a person with autism can make a ton of money writing a book about having autism, especially if they make it sound as exotic as possible.

I'm a pretty good writer, and I have autism, but I think I will try to make money in other ways. I find it hard to write about having autism, especially if I have to make it sound exotic. It doesn't feel exotic to me since it is my life.* Also, as everyone knows, being asked "What is it like being gay?" or "What is it like being a middle child?" is very confusing, because you don't know what a lifelong situation is "like" because things have never been any other way. I feel like it's kind of a betrayal of yourself to write a really sensational book about a disability you have always had.

Anyway, I'm just trying to say that I'm not going to spend a lot of time writing about "what autism is like for me" or "what autism is." There are lots of places you can read that (some of them good). But this one page is an exception because I really just want to talk about the pop culture portrayal of mild autism/Asperger's Syndrome (mild autism and AS are not really synonyms, but whatever, pop culture thinks they are). I want to explain why it's not correct.

Lots of people think "Asperger's" is a purely social disability.

According to pop culture, people with "Asperger's" do some strange/geeky things, and don't understand other people's feelings, and don't have any friends. And that's all that "Asperger's" is.

This is fucked up because it's not true. First of all, it leaves out some really difficult parts of living with autism, and leads people to think that mild autism isn't a real disability. Second of all, it means that the severity of an ASD person's disability is often judged by how socially successful they are. This means that if a person has friends and/or seems "normal," other people won't believe that they are disabled, even if the person has a lot of other problems.

What are those other problems?

Well, one of them is called "executive dysfunction." I recommend reading the Wikipedia page on dysexecutive syndrome, which is a disorder caused by a brain injury, but is very similar to what ASD people experience. Executive dysfunction affects many people with developmental disabilities and is a huge issue for every Autistic person I know, but it hasn't been studied very much and isn't officially considered to be part of autism. (I'm guessing this is because so many studies are done on kids, who have a lot of decisions made for them and therefore aren't going to show executive dysfunction as clearly.)

Also some people with autism have trouble transitioning from one activity to the next, have anxiety problems, have intellectual disabilities, have depression, have sensory issues (get upset by certain sensory experiences, like loud noises or stiff clothes), get upset unless everything is a certain way, or have trouble talking. (Trouble talking can mean a lot of things, like having trouble pronouncing words so people can understand them, having trouble putting together clear sentences, not being able to talk at all when you're upset, or talking in a style that other people react badly to.)

One reason I like to say I have autism instead of saying I have "Asperger's," even though there is a stereotype that autism means severe autism and there is a ridiculous stereotype of what severe autism is: my problems are mostly related to executive dysfunction, anxiety, transitions, and having trouble talking. At least the stereotype of severe autism includes people being upset, not liking change, and not being able to talk or take care of themselves. Even though it's overblown, it's more like what my actual problems are than the "Asperger's" stereotype.

YOU MEAN YOU DON'T HAVE SOCIAL PROBLEMS??

Okay dude, here's the thing:

1. Lots of people with disabilities have social problems. Especially people who have developmental delays, because when they're in school, they may not have the skills or interests that other people their age have. Actually, for people with autism, it isn't always that we seem too young; some people with autism seem too old because they are self-educated and know about things that other kids don't know about, or "talk like an old person." But it can go either way. Or both ways in one person. Talking differently or having different interests can make it hard to fit in.

2. Lots of people who don't have disabilities like to ostracize people who are disabled. Some people with mild autism do things that "look disabled" like flapping their arms or clapping their hands when they're excited or running around all the time. This means that many non-disabled people aren't going to want to be friends with them.

3. Some people with autism may want to talk about the same things all the time, or always do activities that are related to those things. There are actually lots of subcultures that are accessible to a person like that, but the average non-Autistic person will want to do a variety of activities, and won't get along with such a person.

4. Some people with autism have very strong feelings and may scare people they want to be friends with, because they are really affectionate and want to spend a lot of time with them right away.

5. Some non-Autistic people may not understand why a person with autism isn't looking them in the eye, or doesn't want to hang out because it would mean breaking their routine. This means that they may think the person with autism doesn't want to be friends with them, when the person actually does.

6. Some people with autism may be shy and anxious as a result of being bullied when they were younger. They may also be kind of self-conscious and distant if they're trying really hard to hide the fact that they are disabled. This can make it hard to make friends.

I'm not saying that I'm 100% sure autism doesn't cause people to have trouble sensing other people's emotions, but there a lot of aspects of autism that could keep someone from being socially successful. I think it's very reductive to say that "Asperger's means a person is socially impaired/doesn't understand other people's feelings/can't make friends."

When I was 16, I was kicked out of a study of ASD kids because the study was about how to make someone better at reading facial expressions, and I was judged to already be good at reading facial expressions. But despite that, I had a lot of social problems at that age, and still have some now.

What is a better way to think about autism?

(In making up this fake question for myself to answer, I'm thinking about a better way than really sensational books and very special episodes of TV shows saying that people with mild autism are super genius geek robots who don't care about other people's feelings, or don't know that other people's feelings exist.)

I wish that autism was more strongly associated with intellectual disability (formerly known as mental retardation). This isn't because some people with autism have ID, although that's true. It's just because I think there are a lot of similarities: a person with autism, ID, or both is born into the world with a certain disability that they will always have. They will develop some skills later than other people. Depending on the severity of their disability, there may be some things they will always need help with. They may have trouble fitting in with other people. They may be abused by other people for being different. They may end up in situations they don't understand (and of course, people may assume they don't understand things they really do understand). They may have trouble taking care of themselves. They may have trouble talking.

This isn't interesting. It's not something to write a book about--which isn't to say that people with autism, or ID, don't often lead interesting lives. But their impairments alone are not interesting. They're just a part of life.

This is not to deny that people with intellectual disabilities are treated terribly in our society, in a different way from people with autism. I'm jealous that they're not seen as curiosities because of their disability, but the awful side is that they are often seen as not interesting at all in a pervasive way. Non-disabled people just want them to be completely kept out of sight. Non-disabled people insult each other using the word "retard" as if it doesn't refer to any real group of marginalized people. Non-disabled people are surprised to learn that a person with an intellectual disability can be funny or cool, and they do their best to avoid finding that out.

However, once people are actually forced to spend time with a person who has ID, such as by being their parent, I think they are more likely to accept the person for who they are and work around the impairments the person has. This isn't really the case with autism. And I think that the movement for people with ID to be treated equally is in a lot of ways ahead of the movement for people with autism, because of this acceptance. At least there are many organizations that encourage people with ID to speak up for themselves--whereas most people with autism are encouraged only to speak about themselves.

*I admit I'm being kind of a bitch what with constantly declaring that I'm not interested in writing about what autism is like. I mean, I know that some people have been recently diagnosed and they are very interested in reading about what autism is and what it's like, which is legit and I don't want to be critical of anyone who's in that situation and happens to wander over here looking for help. I just tend to be really snarky about this stuff because I really don't like the cultural trend of people with autism being expected to educate non-disabled people about autism. But if you actually have autism and want to talk about it, you should get in contact with me on tumblr or gmail or something.

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.)

small things

(This is kind of a messy post, because I started wanting to write it a few days ago and when I don't write things immediately they become disjointed. But I think I'm possibly hitting on some useful stuff.)

Recently Dave Hingsburger wrote a post (which I really liked) about riding a renovated elevator with his partner and a woman with an intellectual disability whom they both knew. The numbering system for the floors of the building had been changed in the renovation, and the woman was confused and scared that the floor she usually got out on had a different number. In his post, D.H. used the incident to discuss different kinds of accessibility--like, people are supposed to understand that, as a wheelchair user, he needs an elevator. But even if people can understand that, or at least accept it when they're told, they can still be unaware (and unsympathetic) when they're creating a barrier for someone with a developmental disability.

Something that I thought was interesting, though, is that D.H. put a disclaimer on the post, apologizing because he hadn't written it carefully and it might be offensive. I'm really unclear on how it could possibly be offensive--because he's calling out his readers who don't accommodate people with DDs when they should? I'm pretty sure that's not it. So I found myself wondering if he was worried that he was making people with intellectual disabilities look bad, or being patronizing, or something, because he was talking about the issue that this woman had.

And, you know, I get that. Being confused about things that other people don't get confused about is one of the most embarrassing things there is. Personally, I have often thought that one train station, or street, is a completely different one. I also misremember times; nothing falls into place for me, things always have to be completely thought through which is something I don't have time for, so: mistakes. And if some new option appears in the middle of a day that I had laid out for myself, I'll do anything to avoid it. It just feels miserable (which has kept me from getting jobs, and so on, because I didn't interview when they first contacted me).

I'd pretty much happily try to keep people in the dark, just because it's frustrating; the moment you realize, for example, that this isn't the train station you thought it was, so what you were saying doesn't make sense, and your friend is waiting for the rest of what you were going to say; everything becomes perfectly clear, so clear that you can't believe you didn't understand it before. So you want those other parts of you to disappear, the parts that existed a minute ago and had everything wrong. You just want the past to drop out of sight so you can move forward like you were never wrong.

The thing is, though, that my instinct feeds something dangerous. The problem with mistakes and slowness and confusion is that they can't necessarily be measured or felt as easily as blindness--and, for that matter, they can't be felt as easily as other aspects of intellectual disability or autism or other disabilities that result in these kinds of small problems. Because they are small problems, and looked at one by one they're not worth worrying about. They're funny. So you got confused about the new elevator. Just laugh at yourself and move on.

The problem is that we have to take stock of small things if we make regular mistakes or are very easily confused. Small things become impossible to laugh at, and even worse because other people don't understand the drain on your time and energy that it takes to recover from so many small things; because other people are just slightly annoyed with you every time.

The problem is that these things seem so embarrassing and stupid that you kind of want to forget they were ever there at all. If it's you, it makes you feel bad about yourself. If it's someone else, maybe you feel that you're airing their dirty laundry. D.H. makes a point of saying that the woman in his post is "bright and competent," as if the events of the post would cause his readers to assume otherwise. Which is probably a reasonable fear because the small things don't even exist in our conscious mind as disability, exactly; at least a lot of people try to understand that you respect someone even if they can't see, can't walk, can't talk--but the small things are still so invisible that they can just completely bias us against someone else or against ourselves, because we see them as an indicator of being inferior in some way.

One of my big issues with disability services at school is that they're completely ignorant of the small things. Accommodations are always about specific things that are agreed on beforehand. There are never accommodations for after you make a mistake (forgetting to show up for an exam, forgetting to turn in a paper that you actually finished). You just have to hope you'll be lucky, because the idea is that people (even disabled people) who work hard and concentrate don't make mistakes. There is no room for that.

I think it is easier, in terms of understanding and accommodation, to be unable to do a particular thing than it is to be able to do it some of the time, or to have it be a lot harder for you than it is for other people but to always be able to do it eventually if you put in the maximum amount of effort and time. Obviously, part of treating disabled people fairly has to be understanding complexities of disability and understanding that it absolutely isn't fair to expect someone to be at the top of their game all the time or working ten times as hard as everyone else--even if they technically can do the same things, with unlimited time, in a vacuum. And I think a really important part of talking about the complexity of mind disabilities is talking about times when people misunderstand things and make mistakes. This is such a timesuck and can make you miserable--and, yes, mistakes seem stupid after, but that doesn't stop the effect of making a ton of them.

But it's really difficult to talk about these kinds of incidents--confusion and fear and mistakes--because we think that they reflect badly on us, you know? Maybe we're immature. We should have done something different. But we really have to talk about them, or there will never be support for people who need it, because a lot of us will always keep making mistakes.

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.

Disabled Staff Person

I think I've mostly written about being a DSP in terms of identity and also aspects of disability that aren't related to impairment, like movement--basically that it is disorienting to always be assumed to be non-disabled or be someone who moves/acts normally because you are staff, especially but not only when staff have an insulting or patronizing attitude toward the people they work for and expect you to share in that.

However, there's obviously something else that makes a DSP different from other staff people, and that is impairment. While I do think the assumption that staff people are non-disabled often comes from just general...um, ablenormativity? is there a word for that?...there's also a more solid reason for that assumption, and that is that staff are supposed to be helping people do things they can't do on their own. So, if you are a DSP (unless your disability is absolutely unrelated to your client's disability, like you have paraplegia and they have schizophrenia) you may sometimes be in the position of being expected to help someone do something that it's hard for you yourself to do without help.

Which kind of begs the question: are DSPs good staff people (assuming there is some impairment overlap between staff and client)? Should DSPs be staff people?

Well, let's try to think first of all what it means to be staff. Let's say there are two kinds of staff: staff and aides. I tend to think you should think of yourself as an aide (it's a word I prefer but I'm not sure if I deserve it). To me the relationship between staff and client is that the staff person has authority, usually because they work for someone else more powerful, and they try to get the client to follow rules. The relationship between aide and client is that the aide's job is to help the client do things that they need or want to do. Depending on the impairment, like if it involves memory problems, an aide might say something that sounds staff-y like, "Hey John, it's time to take a shower," but there will be a different motivation and the aide and John will have discussed when John wants to be reminded to take a shower.

I think impairment matters more if you are an aide. Since staff/client is mostly about staff making clients follow rules, a lot of the things the staff has to do are pretty random and have nothing to do with impairment. In some cases, you could actually switch the client with the staff and the client could perform the staff's job pretty well. For example, at the summer camp where I worked it was a rule that campers (who were mostly adults with intellectual disabilities) couldn't serve themselves at meals. Obviously some people actually did need help serving themselves, but mostly I was sitting at a table asking a bunch of people if they wanted carrots who, if not for the rule, could have just gotten some carrots themselves. And this completely artificial rule added all these dimensions to my relationship with the campers at my table, which was weird.

There's also the fact that having a good relationship with clients becomes more important if you are staff. If John and his aide Sarah don't particularly like each other, it's not any bigger a deal than someone not liking one of their coworkers. They can just be polite to each other because they're both getting what they want (Sarah is getting paid for doing her job, John is getting support he needs). But if Sarah is staff--i.e. she has to get John up at seven every morning to ride in a van to the sheltered workshop--you'd better hope the two of them are really close because John is likely to be pissed off at her a lot of the time.

No one does their job right all the time, so I feel like the measure of whether someone's good at their job is just whether they're good at the majority of the things they're required to do. Let's say I'm an aide for someone who constantly forgets what they're doing from one minute to the next. I've mentioned how extremely difficult this is for me because, well, that's what I'm like except I guess I'm slightly above the line where I get staff for it. I am going to suck at helping this person dress, shower, etc.--if I'm this person's aide I'm basically going to suck at my entire job. (I also know from past experience that I start resenting the fact that if the person doesn't get dressed etc., that is considered to be my fault not theirs, whereas in my own life if I don't get dressed etc., that is considered to be my fault too; and stuff like that.)

However! If I'm this person's staff person, I could be great at my job. I can do a bunch of random easy stuff that my employer inexplicably requires me to do instead of letting the client do it. I also--and yes I feel very creepy saying this--am very good at convincing "non-compliant" people to do stuff, and calming down people who are upset. So my success rate at doing the tasks required of me suddenly goes up from, say, 50% to 90%, in the change from aide to staff person. I become competent, for some very dumb reasons, and at the cost of someone else's freedom.

I think it's very important to explore these facts because there is not very much writing about being a disabled staff person (let's include any kind of figure who offers support and can abuse power--teacher, psychologist, etc.) for disabled people. I have to figure this out for myself. And I think just as non-disabled people assume all staff are non-disabled, it seems like disabled people kind of do too when setting up the staff/disabled relationship as simply oppressor/oppressed.

So let's be clean about this.

1. I don't know why non-disabled people choose to become staff. Maybe they think it will be easy because they have someone disabled in their family who they get along with. Maybe they do it out of charity. Maybe they just think it's fun. Maybe they couldn't find another job.

2. I decided to be staff because I am disabled and it seemed like the only safe option. If I work in environments where no one is disabled, then I end up feeling under a lot of pressure to pass and I feel depressed and isolated, and end up experiencing the whole dissociation and self-injury swarm of awesomeness. I'm also not good at a lot of normal jobs because I can be very slow and don't think about big systems very well. Being staff not only frees me from a lot of these problems, but often provides me with the experience of getting to be around other disabled people, which makes me calmer and happier. I don't feel that I have another choice but to do this kind of job.

3. But it's very, very important for me to think about the ways that my attempts to protect and look after myself can damage other people. I wrote a post addressing some semi-related issues a long time ago--mostly about how I prefer working in segregated environments. Now I find myself thinking about how I prefer (for myself, if I resolutely ignore how it affects other people, which I can't) being a staff person rather than an aide.

So where does all that leave me?

I think there are two directions I can go in. One is to practically accept that I could easily contribute to fucked-up situations (either contributing to oppression by being staff, or contributing to someone's life being a little worse by being a subpar aide), and to decide that I will always avoid those situations by:
    a. being an aide for someone whose support needs are primarily physical, emotional, and/or communicative, rather than cognitive
    b. being staff (i.e. an authority figure) in an environment where I don't think it's wrong for me to have authority--for example, working with kids instead of adults

The other direction is to argue that maybe I actually am a good aide for people who have my kind of impairments, even though I suck at some stuff, because I have more rapport with them and am good in emergencies or something, and that that should outweigh my drawbacks. But I don't know if those things do outweigh them. Emergencies don't happen enough to really become the kind of task that can change your success percentage from 50% to 90%. And like I said--although I wouldn't want to be an aide for someone I didn't click with, and wouldn't keep a job like that for long--I think that getting along with clients is awesome but it should not be part of the job because if you need to use your bond to get them to do something, then there's something wrong with the job. So I will go with the first option.

Next year I'm planning to work as a school aide for kids with disabilities (don't get confused by the terminology, this is a staff person job), and I may keep doing that for a while to get my head straight and figure out what else is okay for me to do. Before you ask, "But Amanda, why don't you just apply to a place that gives people aides, and tell them that you have a disability and you need these kinds of clients, or if you have clients who have certain kinds of impairments, you can only work with them on certain things?" I'd like to remind you that this blog is not a comedy club.

Passing as Ethics: a primer

Passing as Ethics

So, passing as ethics is a term I invented and I use it a lot. It’s at the core of a lot of the stuff I write. In retrospect, I wish I had said “passing as functioning” or “passing as cure” because I think that would be more inclusive and cover more ground. Originally I thought that passing as ethics only happened to people with autism, but as I learned more I found out that it was more pervasive than I could ever have imagined.

Here are some passing as ethics values. I’m mostly writing this as if a professional is saying it, but disabled people can totally feel most of this stuff about themselves and I certainly did for a long time. I think it’s a very basic part of life for most people.

1. It is better for a person with a physical disability to walk without any visible mobility aids than it is to use a wheelchair, crutches, or cane--even if the person finds it painful or tiring to walk unaided, and/or is danger of falling.
2. If someone’s disability causes them to have an unusual gait, this is a problem, and it would be an improvement if their gait could be changed to look more normal, even if this didn’t make the person walk any faster or more easily.
3. Habits that mark someone as a person with an intellectual disability or autism, such as flapping hands, are inherently bad, and people who do them should be trained not to do them.
4. If there is a conflict between someone with autism and someone without autism, it’s the person with autism’s fault. If a person with autism gets bullied, this is evidence of why #3 is true; if no one had been able to tell they had autism, this wouldn’t have happened.
5. If someone misunderstands a person with autism, it is because the person with autism didn’t express themselves right.
6. Deaf and hard-of-hearing people should learn to lip-read. Hearing people need not learn sign language.
7. So basically, people with disabilities should always try to communicate in a way that is comfortable for people without disabilities, even if it makes the people with disabilities uncomfortable
8. To sum up, any habit, style of movement, facial expression, interest, feeling, word choice, way of pronouncing words, way of sitting, way of communicating, okay you get the idea, that is commonly associated with disabled people is
a. the opposite of success, and must be destroyed to improve someone’s “functioning”
b. morally wrong in some cases--that is, the person who is doing the behavior that’s associated with disability becomes automatically wrong in any conflict
9. If someone who used to look like they had a disability now doesn’t look like they have a disability (to most people), then they are recovered/cured (no matter how negatively it affects them to hide their disability, and no matter how many less visible aspects of their disability continue to affect them).
10. Don’t kill yourself after reading #1-9 because people will just think you killed yourself because it was so depressing to be disabled.

13. Social model of social failure

I guess this as close as I will get to an ending. I've typed up everything I can find in my notebook related to this, and written the things I had floating around.

Basically I think it's definitely true that a lot of normal people sync up with each other and come off in certain ways to each other, and then when a lot of people with autism don't sync up with normal people, or don't come off properly, the results can be very bad for the person with autism.

I don't think this relates to people with autism not having "social skills."

I don't think social skills exist. Or, if I do, I think they exist like God exists--in everyone. They just may not always be apparent. For example, I may have very good social skills when relating to other people who have disabilities, or people who are interested in the same things I'm interested in. I have much better social skills with men than I do with women. Social skills are not contained in a person--they require the right other person.

With work, I think a lot of people can learn to develop their mindfulness and modulation skills so that they can have good social skills (i.e., capacity to connect) with more people--or, so that more people can have good social skills with them. It's the same thing.

Some people--disabled or not--may not be able to learn how to do that, but they will still sometimes meet a person who is exactly like them, or who is very good at mindfulness and modulation, and they will have good social skills when they are with that person.

Other people will just not let other people in. Sometimes it will be because the other person is obviously different. Such people may have good social skills when interacting with people who aren't different. But with people who are different, they will always have no social skills; and when a person who's different is with someone like that, they will "lack social skills" too. (But if they were told by a professional that they lack social skills, they won't understand the two-way nature of the failed connection.)

A person could be going through life, who can't talk, doesn't like to look at people, and is in a lot of emotional pain which they express with "challenging behaviors." This person may live in an institution where no one engages with them because the person is not judged to be interesting, or interested, or capable. One day a new person comes to the institution who is interested in the first person. They start to walk around together and sit together, even though they don't look at each other. Maybe they play games like the two kids I knew who liked to move each other's arms without looking at each other. Maybe they make noises at each other. Maybe they just physically stay near each other as much as possible. This is what life is about, and for some people, it never happens.

But it just takes people who fit each other, or learn to fit each other.

When someone is isolated or bullied, that is not all about them. Other people are bullying them and deciding not to engage them. Still other people, from a distance, in abstract, are framing the person as Someone Without Social Skills, while leaving the other people involved unmarked.

But everyone involved must have bad social skills, because they are all contributing to what is going on. Maybe we can't in the short term stop people from bullying and isolating other people, but we can in the abstract apply the social model of social failure, and stop saying that social failures deserve to be alone.

4. Social skills and intent

I also guess you could--well, I mean, I can kind of feel the shape of an argument in my head--"Just because you guys like Stephen doesn't mean that Stephen has good social skills! That's something you guys are doing, not something Stephen is doing." I am sort of intrigued by the surfacing of this idea in me. If someone is severely disabled and doesn't really follow social rules like saying please and thank you, and doesn't seem to modify their behavior based on other people's reactions (I'm now talking about a hypothetical person because I feel like it's not possible to objectively judge that any real person isn't modifying their behavior), can that person really be said to have social skills any more than an object or a baby or a dead person that other people feel comfortable around? How can just being likable be a social skill?

Well I don't know but aren't some nondisabled people also just like a pretty rock that other people respond to because the sight of it makes them feel good?

I'm later going to discuss the idea of "mindfulness and modulation," which is a particular way of relating to people that I think is legitimately termed a skill, but which is not especially underrepresented in people with ASD, and is even overrepresented. Mindfulness and modulation is actually a conscious, intent-based social style. But lots of non-disabled people who are socially successful do not practice mindfulness and modulation, and may not move through the world with any more intent than someone like Stephen.

I mean, I recall meeting a friend of a friend who seemed very normal, and whom I didn't particularly like. Afterwards, my friend said, "She's sort of hard to spend time with because she doesn't pick up on social cues." I remember thinking it was funny because that seemed like such a textbook description of someone with "Asperger's," but this girl didn't have any of the qualities that would cause me to read someone as ASD. It hadn't even occurred to me to think of her as having "bad social skills" because she was normal. I guess I think of "bad/nonexistent social skills" as being something They say about Us--people with DDs or mental illnesses, or people who are part of subcultures. If They fuck up, if they're insensitive, it's just how they are.

If I fuck up, I think it proves everyone right.

Kids with ASD are said to be bullied and ostracized because they "lack social skills." In this equation, people who hurt other people (the normal people who are bullying the ASD people, conveniently erased by the passive voice) are said to be skilled. In this construction, they are the Haves and we are the Have-Nots and the thing they have is the ability to understand other people's feelings and reactions.

But um, then why are they acting like that if they know how it feels? When I was being bullied I remember having a feeling that the people who bullied me weren't real because they didn't seem to care about anything real and they didn't seem to know that I, and their other victims, were real.

(I went on a brief mental tangent trying to figure out if bullying can be considered a social skill--I mean yes they are mean blah blah, but even a bad action can come out of talent. I've concluded that while certain types of manipulation and abuse can be considered skills, most of the people who bullied me were not especially sophisticated at doing so. Obviously I was affected, but it's very easy to make someone feel bad; the tactics they used on me would have worked on almost anyone.

In the "My Year of Flops" section, I will discuss a bully with very good "social skills." I don't mean to imply that no such people exist.)

3. About Stephen

This summer I had a camper named Stephen of whom I was very fond. Although Stephen was not very good at explaining what he wanted or needed, he talked all the time as he was a full-time user of language as maintenance. Some common threads of his were:

"They have to charge the golf cart?"

"No camp in the winter."

"Will I have a good Thanksgiving? Where will I go?"

"Is it mine?" (about various objects)

"I'm on vacation?"

"I'm not going home today. I like it here? Yes, I like it here."

When I was on break I'm told variations on the following occurred:

"Where's Amanda?"

"She's on her break."

"Amanda's at Walmart. Where's Walmart?"

"It's in Rutland."

"Where's Rutland?"

"It's about half an hour from here."

"What's a Walmart?"

"Stephen, you know what a Walmart is."

"Which Walmart? Where?"

"It's in Rutland."

"Where's Rutland?"

I have often seen "asking repetitive questions" used as an example of ASD people's inappropriate social behavior. Setting aside the fact that Stephen was a very nervous person and I would never criticize him for trying to calm himself by confirming that the world continues to work in the same way every day, I felt close to him when I was answering his repetitive questions. I was very stressed out and I can't imagine that session without Stephen's presence and our conversations, which were like verbal massages--straightening out our minds by moving them carefully along the same old tracks. I love old tracks. I miss Stephen all the time.

I guess you could say that even if Stephen had the perfect social skills to socialize with me, that doesn't matter because I'm not normal, but for one thing I know a lot of normal people who like Stephen, and also it's not fair to say that only some people deserve to have their reactions to other humans be so important that they become the yardstick by which other people's abilities are judged.

Let me be played

I think that expectations for staff should be based in service not control. Which is to say you should try to give someone what they want not what you think they need. The obvious response to this is "but some people run out in traffic" and that's definitely true; obviously control is called for in some cases. But I feel like staff should start from a place of trying to serve people and then if the person is actually in danger, you can try to stop that specific situation. I think controlling someone should be something you decide to do in an emergency, not something you're expected to do as a regular part of your job. I think staff should be judged on whether the people they work with are satisfied and happy.

I was reading some of Roia's posts at The Mindful Music Therapist about how she felt really judged by the staff of someone she was a therapist for because her client kept taking her clothes off during therapy sessions. She felt like they thought she wasn't competent because she wasn't able to keep the person from doing that.

This is really depressing to me because I think there are a lot of motives for someone taking their clothes off that would actually reflect well on the staff person/therapist/teacher they did that with. I'm not saying it's good that someone strips, but it could mean that they feel safe, or in my experience it could mean that they want to play a trick on their staff person and see how they respond. I feel like if someone is trying to fuck with you, that's a pretty good sign of the person wanting to relate with you and learn more about you, and also to my mind can indicate that the person is confident about expressing themselves and initiating connection with other people.

So why would anyone be seen as incompetent because a person she was working with did that?

There were some times at camp when I'd be really pissed at someone and then I would realize, "I'm upset because I'm trying to stop a man twice my age from carrying his tape player with him to breakfast. What the fuck is wrong with me?"

The answer is, a lot.

Presumably in Real Life I don't get pissed at people for carrying tape players around. Actually, a person who carries a tape player around sounds like someone I would really like. And also, if I was the parent of an adult (that is, if I was an authority figure but without the policies/rules that someone like a staff person has) I can't imagine getting pissed at my son for wanting to carry around a tape player.

One reason a person might get angry would be if they think another person is angry at them or is trying to upset them. I knew that David generally liked me and we were having a conflict because he wanted to have his tape player, not because he wanted to disagree with me for the sake of disagreeing. So that doesn't explain why I was angry.

I should mention that when I say I was angry, I don't mean that I actually yelled at anyone, but just that I realized I wanted to, and then generally backed down and felt incredibly creepy and messed up. This happened probably three times, fully, but I think there were several campers who I resented on a low level even if I tried to be positive and get along with them on the surface.

I know that staff people can't always have positive feelings toward the people they work with, because some people just don't click with each other. But in retrospect, I think that I resented a lot of people not because of anything they were or did, but because I felt I would be judged for the things they couldn't or didn't do. This was a big problem with people who were slow or spacey or had a very specific way of doing things--I would be thinking, "fuck, we're going to be late for [breakfast/activity/etc.] and people [i.e. staff] are going to think I'm not competent" or "people are going to patronize me because I can't get three people showered in forty minutes"--or, with David, "people are going to think I'm a bad counselor if David is sitting there listening to his tape player instead of participating in activities."

Which is a sign that I'd gotten the impression my environment valued control above service.* When I felt like I would get in trouble or be judged if I couldn't compel my campers to do things a certain way, that caused me to take completely innocent behavior personally. Like lots of people, David often preferred listening to music to interacting with a group--but when I felt like my job entailed getting everyone to interact in a group, wanting to listen to music became something David was doing to me. When he wouldn't participate the way I was expected to be able to get him to, then I felt I looked bad, and ended up thinking things like, "Why does he have to be so selfish? Can't he think about how his behavior affects me?"

Which is really bad because it meant that totally normal and inoffensive things about David became a source of conflict, and made our relationship less positive. Although I think we had a good relationship overall, it would certainly have been better if I hadn't been stressed about how his personality traits were going to affect me. I could certainly have served him better than I did.

*I don't want to sound so critical of the place where I worked. For example, during orientation we were told, "Some campers with autism or OCD may obsess over checking things or may want to do things a certain number of times. We have all the time in the world--if it makes someone feel better, then do stuff a certain number of times." But despite this, I still ended up feeling pressured to control my campers, and I know I wasn't the only one.

I can't let that happen though. I think my goal as a staff person should be to be patronized by other staff. I want people to tell me I'm gullible and a pushover and I'm not being professional. He's not really sick. He's not really in pain. You can't just let him do what he wants all the time! You have to hurry him up. Oh, he tries to get people's attention all the time, just ignore it. Why is he all the way over there? What is he doing? She shouldn't be talking to you like that. He's playing you.

One time at the ABA school I saw a kid tracing squares on the carpet and I reached out to do the same. His teacher said, "Don't do that! You're encouraging him."

Fuck, I hope so.

I really like this Retard Theory post but I don't think that's an acceptable word for the poster to be using. Maybe more on this later. But I know that some trans women really don't like for transmasculine and genderqueer people to try to "reclaim" the word tranny--there's a web page in fact trying to collect evidence that the slur is mainly used against trans women and therefore doesn't belong to other trans/gender-variant people. I think this is important.

I like the word queer a lot and sometimes use it about myself. But when I was growing up, no one ever used that word as a slur, so it's funny--I feel like nowadays people who call themselves queer are not really reclaiming it, we're just using it because it's a cool word or it feels less constricting than another description. On the other hand, I fucking hate the word dyke, and I was really angry when someone I knew who had never been openly lesbian would throw the word around and use it about me. She said, "Well, I'm a dyke so I can use it." But I mean...I've actually been called that, so it's actually painful for me to hear it, and I don't see how someone can "reclaim" it when it was never used against them in the first place.

The SpeEdChange guy is implying in the comments of his "Retard Theory" post that he was labeled MR at some point and that's why he feels he can use it? Eh, I don't know. I just haven't ever heard of a person with an intellectual disability identifying that way, and I'm leery of absolutely anyone in the world who doesn't 100% for sure have that exact disability using it...I know this all seems very nitpicky, but I just am always against the idea of people saying things like "we're all the same, we all go through the same things." No, we don't.

I do think his intentions are very admirable though, and I certainly don't feel included in the terms crip or gimp (I may not be supposed to). I like the idea of saying Failure Theory, but YMMV.

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.

high-functioning is dumb take one

in other news, I continue to hate the term "high-functioning" so much that I want to start some sort of google-bombing project or something so the first result for high-functioning is an explanation of what a dumb thing it is to call someone. I'm going to try to make a really short, simple list of reasons why it is such an insulting and inefficient term.

1. people who are labeled "high-functioning" are still disabled and therefore less "high-functioning" than people who aren't disabled. But referring to someone as high-functioning can cause the conscious or unconscious impression that the person's disability isn't significant or real.

2. describing a person's disability by comparing it to other people's disabilities is kind of messed up. If some people are "high-functioning," then other people are "low-functioning," which I think is a terrible way to describe a person. It makes it sound like the person contributes nothing to the world. But even setting aside how insulting these terms are to severely disabled people, describing mildly/moderately disabled people by saying basically "they're not like severely disabled people" does the same thing as #1--it encourages people to think that a mild disability shouldn't be taken seriously, because the disability is constantly being described in terms of "well it's not as bad as something else."

3. "high-functioning" and "low-functioning" are terms that are ridiculously broad. They imply that if someone is bad at one thing, they are bad at everything, and vice versa. A person ends up being labeled as hf or lf based on just a few things about them. And when (as is often the case) someone is labeled "high-functioning" based on the fact that they are a fluent speaker, or they can pass for someone without a disability, that feeds the already too prevalent belief that being able to speak, or being able to pass, is the same as being successful. This hurts speaking/passing people because our problems are ignored; and it hurts nonspeaking/nonpassing people because they end up receiving services that are way too overfocused on trying to get the person to speak or pass, instead of trying to promote independence, happiness, and communication in ways that are most immediately achievable to the person.

4. "high-functioning" is a term that is ridiculously broadly applied. Since most people who speak are labeled as high-functioning, it's a completely meaningless label that can cover, for example, a person who receives a lot of support in living and has a supported employment job, all the way to a person who lives independently, has a competitive employment job, and has never received any services for their disability.

5. and--most obvious to me, but I never hear people say this--it has always struck me that there is no widely used term "middle-functioning" or "moderate-functioning" (I know those terms are used, but not commonly). But there can't be just two kinds of people with Down Syndrome, or two kinds of people with autism. If you must divide people up by their ability level, you've still got to admit there are more than two ability levels in every disability.

SO WHAT SHOULD I SAY INSTEAD????

Well, if you really have to divide disabled people up and compare us to each other--which I admit is sometimes necessary, for example when you are thinking about who needs what services, or if you are having a discussion about passing/speaking privilege--I think it is better to say mildly, moderately, severely, and profoundly disabled. Now I still think this is super blurry because again not everyone is at the same ability level for different things, but at least there are four options to choose from instead of just two, and at least the terms don't sound as ridiculously weighty and pervasive as high-functioning and low-functioning. "Mildly disabled" still has the word disabled in it so it doesn't imply that the person's life is awesome and easy. "Profoundly disabled" also has the word disabled in it so it makes it clear that the person's disability is all that is being talked about--it doesn't imply that the entire person, their soul, is "low-functioning." (Also, although I know this is silly, I enjoy using the word "profound" to describe people who are so often devalued.)

However, also try to avoid dividing disabled people up with these fuzzy terms at all. A lot of the time when people are running around saying "high-functioning" or "low-functioning" it would be a lot easier to say the person is good at math, or nonverbal, or something. You can best serve and support a person when you think very specifically about what their abilities are, instead of trying to categorize them in such a general way.

Yeah so I'm serious about wanting to google-bomb this and I would appreciate people's suggestions about what to add and subtract.

ambitions

I know I don't really need to decide now (or ever, I can bounce around) but I think a lot about job stuff after college and what kind of things I want to do.

I think something I've been realizing is that I may not be equipped to be support staff for adults who have ID/ASD. This occurred to me during the third session of camp when my brain stopped dead after micromanaging three people's showers in a row. I am a person who is mentally able to shower, but it's only been in the past few years that I've been able to do it well, without becoming spaced or having to use timers and write directions on myself. Even though I can do it now, I guess the foundations are still shaky enough that I have a limit, and don't have enough of that type of function to spare on other people who have similar problems. I'm just not able to do that kind of job long-term, and that makes me angry and sad.

An obvious idea would be to work in a school because there would be a fixed schedule and I could help people in academic areas where I'm not impaired. But I guess what bothers me about that is I feel like so many (non-disabled) people get excited about "special needs" kids because they think they can just waltz in and make the kids not be disabled anymore, especially in the case of autism. Or because they think that kids with disabilities are really cute and interesting--while being creeped out by disability in adults. These kinds of attitudes have always made me want to work with adults and not kids or teenagers because I feel like adults with developmental disabilities are just erased and devalued and the people they end up having as staff are not serious about what they do.

At the same time, the fact that most people who work in special ed are all Nondisabled Person's Burden about it isn't really a good reason not to work in special ed. And my decision to work with adults or kids doesn't affect the stigma against adults so "I have to work with adults" is kind of a dumb principle to have.

I'd really like to end up working with people who have "multiple disabilities," which I think is a really weird term. Last spring I got to spend some time in a class of preteens and teenagers some of whom had that label, and I felt like there wasn't enough of an organized attempt to engage them and develop communication. I mean, I'm not denying that a lot of people with the label probably really do have mind disabilities as well as physical ones, but I just think it's ridiculous to act like you can assess someone's intelligence who doesn't have a communication system. If I had the choice I would really want to do nothing but work on AAC with people all day, because it's so important and I think I'd be good at it, but I think that's sort of a big deal job that you have to go to grad school for and make your own schedule which doesn't seem workable for me.

Obviously I write a lot about being a Disabled Staff Person but it's usually more about identity and about having movement and communication things in common with clients/students that the other staff don't have, and how that is a weird experience. But the other part is that sometimes I wonder if I just am too disabled to be much good to other disabled people. When the person I'm supposed to be supporting doesn't need much more help than I need, or needs kinds of help I wish I could get, it ends up being sort of disorienting and occasionally making me jealous since I'm "high-functioning" enough to be expected to direct myself in daily living when I sometimes barely can.

In Can the World Afford Autistic Spectrum Disorder?, Digby Tantum tries to say that people with ASD are more wise, or creative, or something, because we figure out pretty early on that there are some things we want that we will never be able to have. And sometimes I do manage to convince myself that it's some kind of spiritual gift, but, well, usually not.