Illusion of Competence

How It Works

2011-12-01T11:18:00.000-08:00

NTs with Big Ideas: We decided to create this autism-related service/ make this autism-related documentary / write this autism-related policy brief.

Autistic Advocates: Was it developed in consultation with Autistic people? Can Autistic people use this service? Are Autistic opinions featured in this documentary/piece of writing?

NTs with Big Ideas: No, we chose to focus on ~~non-Autistic~~ parents and professionals.

Autistic Advocates: Why on earth would you exclude Autistic people from this thing which is about autism?

NTs with Big Ideas: Well, we had limited resources, so we could only focus on one stakeholder group. And we chose to focus on ~~non-Autistic~~ parents and professionals (is that two groups? Oops, I meant we could only focus on two groups) because — um…

because parents and professionals have all the spending power

because parents and professionals have the biggest lobbies

because if we consulted Autistic people, they would want us to provide a different kind of service than the kind we want to provide

because if we consulted Autistic people, they would want us to take out this ableist rhetoric which we want to use

because it never even occurred to us to ask Autistic people about this thing

… because we did.

Wanting you to listen to me doesn't mean I don't want to listen to you

2011-09-27T13:17:00.000-07:00

I've been reading people's blog posts about the TPGA Dialogues, and I think that some people think that I think something that I don't think. (How's that for Theory of Mind?) I've seen a couple different people summarize the original disagreement that Robert and I had by saying: "Robert wrote a post about how the R-word can hurt parents of special needs children, and then Zoe responded saying that non-disabled people have no right to be offended by the R-word."

I'd just like to clear this up because that's really not something that I think at all! I think the R-word is offensive, and that quality can/should/must be recognized by everyone, not just people with disabilities. I would never ask anyone not to be offended by the R-word. Please, get offended! Do it loudly! Make sure everyone knows you're offended! We need as many people as possible speaking out about this.

Here's the thing, though: I don't think that it's okay to talk about the offensiveness of the R-word without talking about how it hurts disabled people. That was my criticism of Robert's post: he wrote a lengthy essay against the use of the R-word, but the only reason he gave was that non-disabled relatives of disabled people could be hurt by hearing it. And I don't think that was appropriate, just like I don't think it's appropriate to talk about sexism and never mention the effect it has on women, or talk about racism and never mention the effect it has on people of color, or talk about homophobia and never mention the effect it has on queer folks. When you talk about prejudice, you can't ignore the people who experience it first-hand. That's all.

People have also said that I wanted Robert to "write from the perspective of a developmentally disabled person" something which he, as a neurotypical person, clearly can't do. Or they say that I expected him not to write from his own perspective. This isn't really true either. I appreciate the fact that parents/siblings/caretakers write about their experiences - they are important experiences to share. But they are not the only experiences of disability that it is possible to have. What I would have loved to see from Robert would be an acknowledgement of other people's experiences relating to the R-word, especially the people who the word refers to. In the entire post, he didn't mention that disabled people are affected by the use of the R-word at all, an oversight for which he later apologized. I was upset about this oversight, not because he was writing from his perspective, but because he left out other perspectives. That's all.

Non-disabled people, I really don't want to silence your voice. I want to hear it! But I want you to hear my voice too. So please speak out against the R-word -- but don't forget to mention the effect it has on disabled people. And please, write from your own perspective -- but don't forget to acknowledge ours.

Free CeCe

2011-09-24T11:07:00.000-07:00

More people than usual are visiting my blog right now because of the TPGA dialogues. That's great because I just found out about something really important that I think you all should know about. It doesn't have to do with autism. But it does have to do with oppression and with human beings having rights. If you can, please please keep reading.

Here's what's going on, from the website SupportCeCe. WARNING: this quote describes a really foul violent incident, which involved racist and transphobic slurs and people getting hurt.

CeCe McDonald is a young African American transgender woman charged with “second degree murder” after an incident that began when she was violently attacked because of her gender and race.

CeCe is a creative and energetic person who, before her life was so unjustly interrupted, was studying fashion at MCTC. She had a stable home where she lived with and helped support four other African American youth, her family. CeCe’s family describes her as a leader, a role model, and a loyal friend. She is known as a wise, out-spoken, and welcoming person, with a cheerful disposition and a history of handling prejudice with amazing grace.

Around 12:30 am on June 5, CeCe and four of her friends (all of them black) were on their way to Cub Foods to get some food. As they walked past Schooner’s Bar in South Minneapolis, a man and two women (all of them white) began to yell epithets at them. They called CeCe and her friends ‘faggots,’ ‘niggers,’ and ‘chicks with dicks,’ amongst other things.

As they were shouting, one of the women smashed her drink into the side of CeCe’s face, slicing her cheek open, lacerating her salivary gland, and stinging her eyes with liquor. A fight ensued, with more people joining in. What happened during the fight is unclear, but within a few minutes Dean Schmitz–one of the attackers–had been stabbed.

CeCe was later arrested, and is now falsely accused of murder

For a month, CeCe was kept in solitary confinement “for her own protection”; she had no say in this matter. Finally, she was transferred to a psychiatric unit in the Public Safety Facility. It was nearly two months before she was taken back to a doctor to check up on the wound on her face, which by then had turned into a painful, golf ball-sized lump.

Later on, CeCe’s friends were harassed on the street by people they recognized from the scene of the fight. Individuals circled the block that CeCe’s friends were walking on and called them ‘niggers’ and ‘faggots’ and told them to ‘go back to Africa.’ When they attempted to wave down a passing squad car for assistance, the officer driving the car said he would not help them.

Everything about this is wrong, down to the murder charge. Dean Schmitz died after initiating a transphobic, racist attack on CeCe McDonald and her friends. It's probable that CeCe or someone in her group killed him, perhaps by accident, while he was assaulting them. That is not murder of any degree. That is self-defense.

Here's the thing: it could so easily have been CeCe who died that night. Trans women of color die all the time for no other reason than because cis white men want them dead. And when the scenario plays out that way, it's not uncommon for the murderers to face charges that are a lot less serious than second-degree murder -- if the police bother to find them at all.

I'm furious and sad that these people attacked and hurt CeCe and her friends because of their race and gender identities. I'm so glad that CeCe survived this attack. Now she is being punished for keeping herself alive, and she needs our help.

Here are some things you can do:
- Go to http://supportcece.wordpress.com and donate money towards CeCe's bail, so that she can get out of jail and back to her family.
- Write a letter. You can write to CeCe to express your support, or write a letter to the editor about her case.
- You can distribute fliers and literature to let people know what's going on.
- Finally, if you have a blog or a tumblr or a twitter or a facebook or email or a phone or if you see people in person, spread the word. Post links, reblog, tell people about it, ask them to donate, ask them to visit the SupportCeCe website.

Let's all do something. Please. Thank you.

TPGA Dialogues: Adventures in Talking to People

2011-09-22T07:10:00.000-07:00

This is as good a time as any to mention that this week we kicked off The Self-Advocate & Parent Dialogues, which is a series of letters between me, Ari, and Robert Rummel-Hudson (the parent advocate who I had that big fight with last month). The Dialogues are being hosted at The Thinking Person's Guide to Autism. I am happy -- and frankly, really surprised -- to say that I think they are going well.

The reason Robert and I agreed to do these Dialogues is because we were both really unhappy with what happened last month -- a bunch of disabled people and non-disabled parents yelled at each other a lot and then went back to their corners fuming about how they would probably never be able to work together. The thing I'm discovering, which is interesting and says a lot about the internet I think, is that it's easier to do that than to hang on and have a long conversation that involves a lot of listening.

I've seen people commenting that the Dialogues posts made them cry. I've cried, and gotten frustrated and depressed, over some of the things that people have said. It's hard to reach out and really try to engage, because that means you won't have your defenses up, and it will hurt more when someone, for example, starts getting all Suddenly Specific Definition Fallacy on you. I think for a lot of people writing posts or participating in the comments, the Dialogues have been a process of engaging, getting hurt, licking wounds, and then coming back to engage again. But so far, people are coming back. And that makes me pretty happy.

Here are the posts so far:

first I wrote a letter
then Robert
then Ari
then me again
then Robert again

Check it out for yourself and let me know how you think it's going.

Ideas for Supporting Disabled Students in School

2011-09-02T14:19:00.000-07:00

[I wrote this last semester but forgot to post it. In my Intro to Special Education class, we were asked to generate a list of ideas that might help disabled students, especially in inclusion classrooms. Here's what I came up with. I'd like to hear your ideas!)

1) Making social education a standard part of elementary school for disabled and non-disabled kids, instead of simply packing the disabled ones off to "social skills" classes alone. Inclusive social ed could cover stuff that disabled kids tend to have trouble with, like how to tell when someone is upset and how to take turns in a conversation, as well as stuff that non-disabled kids tend to have trouble with, like how to be kind and not bully other children.

2) Lesson plans which incorporate many different kinds of learning (visual, auditory, kinesthetic, musical, artistic, verbal, etc.) would allow children with all kinds of brains to be in the same classroom together. The kids would each have time to learn in the way they were most comfortable with, and develop their strengths. But they would also work on their weaknesses, learn from each other, and develop many different areas of their brains.

3) Entirely getting rid of social conventions for proper classroom posture/behavior. Do not require students to sit up straight, stare at the teacher, or be perfectly still. Allow students to stim, sit on the floor or on top of their desks, stand up, or move around if this facilitates learning. This might require some negotiation to get the students working together and not distracting each other, but I think it would let a lot of people come into inclusion classrooms who are being kept out because their behavior, although not harmful, is considered "inappropriate". It would also contribute to raising a generation of people who don’t feel prejudice around non-standard ways of moving. I think this would reduce ableist discrimination when these children grow up.

4) Giving accomodations that have to do with time. I have the most questions about how to implement this particular idea. People with autism and other brain disabilities often have difficulty with time management, and we also often think more slowly than NTs, so we may take longer to perform a given task. This can make it difficult or impossible for us to do the same amount of work as NT peers, even if we have mastered the same amount of information. I would like to research and think some more about accomodations that allow some disabled students to turn in different volumes of work than other students, or to turn in alternative assessments in forms that are not so taxing on their brains.

thoughts about breaking the internet

2011-08-24T23:07:00.000-07:00

First of all, Julia wrote a beautiful post which expresses her frustrations about online conflicts between self-advocates and non-disabled parents. Yes, it is angry, and its anger is perfect and honest because so many of us have been hurt and we are angry right now. Please, please read it.

Now I’m going to talk about breaking the internet, and why I’m scared that for me, the internet will never get un-broken.

I didn’t want to start a big fight where everyone blew up at each other. I certainly didn’t want to come across as a parent-hating separatist, which, to some people, I did. What I did want to do was point out that when non-disabled people talk about ableism, it’s not okay to only talk about the impact that it has on them (and other non-disabled parents and siblings).

I was surprised at how many people disagreed with that idea. I'm not surprised anymore, but I am so, so sad. And I'm tired. And yes, I am angry too.

A lot of people are telling me I should write more carefully so as not to upset parents, but often these are the same people who are saying very hurtful things about me and my fellow self-advocates. People are telling me that I have to “look at things from the parents’ point of view,” but sometimes they seem unwilling to consider mine.

I found a gem of a blog post about this issue which included the remark, “Sadly, these ‘self advocates’ are only able to see their own struggles from their own perspective.” So I am being chastised for failing to view my own experiences from someone else’s perspective, by people who are defending their right to view make their own (non-disabled) perspective the focus of conversations on disability. Does anyone else see this as unreasonable?

I feel that for autistic people speaking out, it is only safe to tell our personal stories, that they might serve as an “inspiration” to others. If we engage with issues of policy or politics, we are told that we are speaking of things we know nothing about. We are telling parents and professionals how to do their jobs, and how dare we assume that we know better than they do?

It also seems to me that there is a very limited range of emotional expression that is acceptable. If we are angry – and I’m not talking about name-calling and swearing, just emotion – we are told that our anger makes our arguments invalid. If we are blunt and forceful, we are told that we will catch more flies with honey than with vinegar. I see people commenting about this whole mess and saying “how can you expect us to listen when you are so angry and so impolite?”

It’s true that I expect people who are interested in issues of autism and disability to listen to me. Not because I’m polite or because I will make them feel good, but because when they talk about autism, they’re talking about me, and they talk about me all the time. If you’re going to spend a lot of time talking about disability, you should listen to what disabled people have to say, otherwise – and I’m going to be blunt here – how will you know what you’re talking about?

I don’t know how we (the community of people who blog about disability from various perspectives) can resolve this conflict in an equitable way. What I do know is that I truly, desperately want to engage in productive discussions with parents about issues that matter to all of us. But I’m not willing to soften my opinions in order to do it. I don’t want to be cruel, but I will be blunt and I will be straightforward. I will not stop reminding non-disabled people of their privilege. I will hang on as tightly as I can to all the dignity I am allowed.

You can’t make a fist with your hand held out. You can’t beg for dignity. It doesn’t work like that.

Non-disabled parents, I don’t hate you, I promise. I really do want to have this talk with you. But you have to meet me halfway.

The R-word and Perspective-Taking: Whose Perspective Are We Taking?

2011-08-16T16:06:00.000-07:00

It’s amazing how much two people can disagree when they start from the same premise.

Rob Rummel-Hudson’s blog post on the movie “The Change-Up” starts off just fine. He quotes an offensive line from the movie and states his opposition to its use as humor. For future reference, the line in question is this: a man viewing his friend’s newborn twins for the first time asks, “Why aren't they talking? Are they retarded? This one looks a little Downsy.”

So yeah, that’s pretty vile. Up to this point, the author and I are in agreement. The problem begins when he starts to explain his objection to the readers. His reasoning goes like this:

“Imagine a parent with a child who has Down syndrome… let's say it's a mom, one who spends her days, her years, taking care of a child, a very special child in every sense of the word…. She appreciates edgy humor, and she liked The Hangover, so when a new movie by the same writer comes out, she decides to take a few hours out of her weekend and go see it.” Rummel-Hudson then asks his readers to imagine how this woman feels when a character on the screen delivers that particular line.

That’s right: the R-word is wrong because it’s offensive… to non-disabled people.

To me, this is as ridiculous as if the author had critiqued the movie’s (doubtless plentiful) sexist humor by writing, “Some of the men in that audience have wives and daughters! How do you think they feel?”

Because, what about people who actually have Down Syndrome? Don’t they go to movies? Don’t people with intellectual and developmental disabilities, who have felt the impact of the R-word firsthand, also appreciate edgy humor sometimes? I’m sure that hearing this kind of language disturbs many non-disabled people, but that doesn’t mean they understand the experience of being used as a punchline.

Rummel-Hudson makes sure to give us all the juicy details of the misery that disability has wrought in this hypothetical mother’s life. He tells us that she suffers when others judge her child, that the strain of raising a disabled kid has most likely damaged, if not ended, her marriage. She has trouble finding a babysitter, and her family members without disabled kids don’t understand what she’s going through.

The author seems to feel that for readers to truly understand the R-word’s impact, they must know that having a disabled child is a truly terrible fate. Shame on those scriptwriters for bringing one more tribulation into the life of this hypothetical martyred mother! Isn’t just having a disabled child bad enough?

Framed like this, the R-word issue has nothing to do with respecting people with disabilities, our identities and our language preferences. The use of the R-word in movies becomes just another way that our existence makes non-disabled people’s lives harder.

The author says that the hypothetical mother he describes is appalled when her fellow moviegoers “think her family's pain is appropriate as a punchline.” Her family’s pain? For disabled people, this type of humor strikes directly at who we are. We, in ourselves, are the punchline. What does the hypothetical mother know about that?

The author says that the hypothetical mother feels isolated by “the ones who will always place her and her child and her family apart,” that this humor reminds her of her separation from society. Her separation? Parents of disabled kids are coddled in this society, spoken of as martyrs and given the benefit of every doubt. Even if they abuse their children, even if they kill them, they will have plenty of champions declaiming to the national news that the unbearable strain of a disabled relative excuses all possible actions. It is this mother’s hypothetical child who is isolated, viewed as a freak, shunted into segregated schools and housing, condescended to, joked about. The mother cannot possibly understand what this experience is like. What does she know about isolation?

I may be told that my response to this post indicates that I don’t have enough empathy for parents. As an autistic person, I’m used to having my opinions pathologized as a lack of empathy or an impairment in perspective-taking. In all fairness, however, I would like to point out that anyone who wants to take a lot of time to discuss the impact of ableism on non-disabled people is doing the exact same thing. I understand that some non-disabled folks have a hard time understanding a disabled person's point of view, but that doesn't make our perspectives any less important. If you can’t understand why a remark like this hurts a disabled person more than it could possibly hurt their mother, maybe it’s your perspective-taking skills that need some work.

Utopian Daydream

2011-08-06T18:56:00.000-07:00

I can’t stop having this idea.

I keep this idea close to my chest and don’t show it to many people because I haven’t indulged in this degree of idealism in probably years.

My mom used to work as an occupational therapist. When I ask her about it, she tells me, “Everyone can do something.” My dad used to be a Marxist; he is fond of quoting “From each according to their abilities, to each according to their needs.” Disabled people have a lot of needs. We also have a lot of abilities. So here’s my idea: disabled people living together as each other’s support staff. Get a group together, and see if everyone giving what they can means everyone gets what they need.

It might work something like this: maybe you would wake me up in the morning and make sure I got showered and dressed and then I would cook us breakfast or help someone else take a bath. If I can’t drive, maybe someone gives me a ride to work and if someone else can’t talk, I could make their phone calls and if you can’t lift your arms, maybe they could do your dishes. I proofread your emails. You help me with my taxes. We lend and borrow spoons. We fill in the gaps.

Would we still feel "broken" if the pieces all fit together?

A Bad Argument For Inclusion

2011-07-27T21:46:00.000-07:00

This summer, I’m doing some disability-related reading for an independent study course. The first book I’m tackling is No Pity: People With Disabilities For a New Civil Rights Movement by Joseph Shapiro. Over all, I’m enjoying this book and finding it educational, though I will warn that it was written before professionals stopped using the r-word, so there’s a lot of that.

However, I’m pretty uncomfortable with the way the author discusses inclusion in schools. I support inclusive education obviously, but there are arguments in favor of inclusion that I think are terrible. Here’s one – I’ll call it the modeling argument. In No Pity, Shapiro quotes the parents of an intellectually disabled girl as saying “When Rachel is placed with retarded children she tends to act retarded.” For this reason, they prefer that their daughter be educated alongside “her regular friends” – presumably, after being placed with them, she tends to act more “regular.”

This is the modeling argument in a nutshell: kids imitate what they see. Place disabled kids exclusively with other disabled kids, and they will act disabled. Place them with normal kids, and they will learn to act normal. The assumption here is that “acting disabled” simply comes from a place of not knowing any better – from a tragic separation from proper, non-disabled “peer models.” No one considers whether “acting disabled” might in fact indicate a healthy level of self-acceptance. Similarly, “acting normal” is assumed to come from a benign process in which disabled kids befriend and observe non-disabled kids. No one considers the mechanism by which this normalization is often brought about – the bullying from peers, teachers, and parents that chips away at the rough edges. No one considers that passing is an exhausting effort which is often fueled by fear and self-hatred.

The modeling argument is about hope, but it’s the wrong hope – hope that integrated education will turn “retarded” children into “regular” ones. It’s also about fear. It is about the dread that disabled children, if allowed to socialize, will feel a sense of comfort and belonging among other disabled people. They might even come to view their natural ways of thinking, moving, and behaving as just that – natural. And we can’t have that.

So we come to see the mixture of disabled and non-disabled kids in an inclusion classroom in a surprisingly malicious way. The point is not that children of different abilities will learn to accept each other – just the opposite. According to the modeling argument, the point of inclusion is that disabled children will learn from the normies the one and only correct way to behave.

Shapiro argues that keeping Special Education segregated sets kids up for failure, because “less [is] expected of students segregated in separate classes.” I’m sure this is true. However, I believe that inclusion for the sake of normalization – the kind of inclusion supported by the modeling argument – sets children up for failure in a different way.

In a classroom with two sets of children – those modeling correct behavior and those being modeled for – disabled children will also suffer from the teacher’s low expectations of them. Disputes between disabled and non-disabled kids will consistently be resolved in the non-disabled child’s favor. Rules governing behavior will be enforced more strictly for disabled children, and relaxed for the “peer models.”

This unequal treatment can create a culture which sees bullying as a helpful way to “correct” visibly disabled behavior. It can lead teachers to use public humiliation against students, or lower students’ grades for failing to suppress symptoms of their disabilities. I have seen these dynamics play out in programs, as well as within families, which use non-disabled peers as “behavior models.” I have experienced some of this treatment first-hand.

In addition to making the classroom less safe for disabled students, an emphasis on normalization reduces the benefit of inclusion for their non-disabled classmates. In my opinion, one of the great things about inclusion is that it can teach non-disabled kids to interact respectfully with people of all abilities. However, it’s difficult for kids to learn this lesson when they are regarded as superior “peer models” or encouraged to bully their classmates into acting more like them.

I don’t think that assimilation is the only alternative to segregation. I don’t think that the point of inclusion is to teach disabled children to act “normal” in an enabled world. I believe that the point of inclusion is to create a different kind of world, and I believe there are ways of supporting inclusion that don’t lead to creating the kind of world I want to live in.

Domestic Hate Murder Coverage Style Guide

2011-05-09T21:47:00.000-07:00

(GREAT BIG WARNING: This post deals exclusively with parents who murder their disabled children, and the ableism in media coverage of these murders.)

I woke up this morning to news of yet another autistic child murdered by their parent. In this case, the child is Glen Freaney, whose mother is currently on trial for strangling him last May. As usual, the grief I felt for Glen was aggravated by rage at the deeply ableist way his murder was covered in many of the articles I read. I have written before about journalists' tendency to express sympathy for parents who murder their disabled children. This time, I decided to take a new approach.

Since it is apparently very difficult for journalists to write respectfully about disabled children whose parents have murdered them, I took it upon myself to create this style guide. If you are a journalist about to begin covering one of these cases, please take these simple tips to heart:

DO NOT write that the victim “suffered from” their disability. Not only is this incorrect terminology, but it is very inconsiderate when in this case what the person really suffered from was being the child of a murderer.

DO talk about who the victim was as a person. What did they like? What were their hobbies? What were they struggling with? Did they like ice cream? What was their favorite color? If you don’t have enough space in the article to talk about the person whose murder you are covering, I recommend that you make room by cutting the obligatory paragraph where you write in horror about how they still wore diapers when they were killed, or how they would have needed 24-hour care for the rest of their life, as if these things were mitigating factors in the crime. It’s not wrong to write bluntly about the victim’s disability, but it absolutely is wrong to use the facts of the victim’s life to garner sympathy for the murderer.

DO NOT ask the readers to put themselves in the shoes of the murderer. DO NOT prominently feature the same old interviews by double-talking fellow-parents-of-disabled-children, who say that while they cannot excuse the murderer’s action, they can understand it. DO NOT seek opinions from experts on the suffering of murderous parents. DO NOT end your piece on a “thoughtful,” “balanced,” note in which you ask a provocatively open-ended question about whether society should really hold the murderer to blame for killing their own child.

DO interview the same people that you would usually interview in a murder case – the victim’s friends, teachers, faith leaders, whatever. Oh, you can also interview those of the victim’s family members who didn’t think that killing them was an awesome idea.

DO NOT lay this corpse at the feet of the special education system, or Medicare, or SSI. There are plenty of problems with each of these systems for you to investigate in detail. Please, do an exposé or five on how this country doesn’t adequately care for its disabled citizens. But DO NOT state or imply that the natural, logical consequence of these failed systems is child murder. If you want to link this specific tragic event to a larger societal ill, DO critique the ableism in a society where child murderers can find sympathy if their victims meet the right requirements.

DO use the phrase “hate crime” where appropriate. DO NOT FUCKING DARE refer to the murder as the desperate act of a loving parent. DO NOT try to tug the reader’s heartstrings with paragraphs upon paragraphs detailing the murderer’s worries for their child’s future. DO remember that if the murderer was concerned about their child’s future, they would not have prevented their child from having one.

DO remember as you write this article that when a parent murders their child, this is a bad thing.

Supercrips make each other sad

2011-04-29T09:42:00.000-07:00

(WARNING: This post talks about internalized ableism and suicidal thoughts)

When people hate themselves for having difficulties that I also have, or feel proud of themselves for not having to ask for help in ways that I ask for help, I have trouble knowing how to feel. It’s difficult to pull apart self-hate from the implied hatred for other people like me. It’s hard to work out how personally to take these statements.

You know how sometimes able-bodied people say to people who are visibly physically disabled, “If I was in your situation, I’d kill myself”? Obviously the disabled people feel hurt, because no one likes being told that their life isn’t worth living. It’s easy to figure out the ethical implications of that comparison when it’s a non-disabled person saying it to a disabled person. But what about, “I am also disabled and I fear that I may soon be in your situation and then I would want to kill myself?” “I am in your situation and I want to kill myself?” “People like us deserve to die?”

It’s hard not to take that personally. It’s hard respond just to the other person’s pain, and not the implications of someone else’s self-hate with regard to my disability and my life.

The idea of the supercrip hurts us all. Growing up in a society which teaches us that the only good disabled people are the ones who overcome, who never give up, we are set up for failure because eventually we will have to rest and we will have to give up. But other people lay this expectation on us again and again, and tell us yes you can do this when the continual trying is tearing our heads apart and we are begging to stop. And even though we can feel in our bodies that we have reached a limit, somewhere inside us there’s a little voice that tells us, you’re making it up, you can do this, you’re worthless if you can’t do this, why do you think you deserve accommodations, why do you think you should get to feel safe.

And this little voice gets louder and louder, and eventually the only options are being Not Good Enough or being dead, and a lot of autistic people I know sometimes lean toward being dead. Because being raised with this idea means making it a weapon, and using it to hurt ourselves, and using it to hurt each other.

Assault on Credibility

2011-04-26T11:21:00.000-07:00

Earlier today I was listening to a Radiolab podcast about War of the Worlds. Aside from the fact that I am a gigantic nerd, this was interesting to me because I am fascinated with issues of deception and belief. So I was interested to learn that, many years after the War of the Worlds radio play aired, Orson Welles admitted that it wasn’t an accident that people took his story of a Martian invasion literally – he had intended to deceive them. “We were fed up with the way in which everything that came over this new magic box, the radio, was being swallowed,” he said. “So in a way our broadcast was an assault on the credibility of that machine.”

As a credulous person, I found that statement kind of devastating. Not because I tend to believe news media, but because I tend to believe individual humans. And when I find that someone has been lying to me, it has the same effect – an assault on credibility.

When I hear about the panic that followed the War of the Worlds broadcast, I don’t laugh at the people who believed that aliens had landed in New Jersey. I think about how, as a child, I would believe similar stories that were told to me by other children. In several incidents spanning from pre-K to middle school, friends told me that they could tell time on invisible watches, that they had seen fairies, that they could access an alternate reality. In sixth grade, one of my friends told me that it had been revealed to her that she was not human. Each of these stories left me in an agony of guilt and confusion. I wanted to live in a world where words had consistent meaning, where people told me the truth, where I never had to doubt my friends. It was becoming apparent to me that I didn’t live in this world, but I didn’t know how to stop believing people.

Actually, I still don’t.

The Orson Welles quote struck a nerve with me today because currently, I’m worried that a friend of mine has been manipulating me. This means that I’ve been thinking a lot about trust and credibility. I’ve also been thinking about Lola.

In high school, I hung out with a group of misfits and nerds, and in my senior year we were joined by a freshman who I’ll call Lola. Lola was often quite friendly, and she was very open about her life. She told us that she had several medical conditions, had been a model, had lived in Japan. She had an abusive ex, a dead ex, had done hard drugs and taken classes at Brown. She was maybe thirteen years old.

She became attached to me, and started dating a friend of mine, who is also disabled. Looking back, I can’t help but feel that she took advantage of our hard-wired tendency to trust. Because even when her stories became started to contradict each other, we didn’t turn away.

I didn’t start to question what Lola told me until we were in the same group on an overnight field trip that my school organized. During the course of this trip, Lola told me so many increasingly implausible horror stories about her life that I found myself in a crisis of faith. I returned from this trip emotionally exhausted and visibly upset. On principle, I believed (and still do) that it’s better to take people at their word when they tell you that they are disabled or have been abused. But I was having difficulty believing the things that Lola told me. I couldn’t figure out if she was telling the truth, and I was an asshole for doubting her, or if she was lying to me and I was stupid for believing her.

I consulted my parents, who told that it made sense to doubt the stories that Lola had told me. As gently as they could, they explained to me that sometimes people lie even about very personal things, and that sometimes it’s okay to disbelieve something that you would normally take seriously. Later that year, one of my friends’ parents called Lola’s parents to express concern about her medical problems. Lola’s parents were flustered and confused – there must have been a mistake, they said. Lola didn’t have those conditions.

My experience with Lola was mild – she didn’t abuse me or trick me into giving her money, and we weren’t even very close friends. But when I remember how she manipulated me, I still feel hurt and confused and ashamed. It’s the feeling of being the only kid who looks at the ceiling when told that the word “gullible” is written there. When the laughter starts, that’s when you learn that people who believe are suckers, dupes, are asking to be hurt.

I’ve written before about how frustrating I find it that jadedness and skepticism are seen as hip and intelligent, and belief – in statements, in people, or in ideals – is seen as uncool and stupid. Obviously I think there’s ableism in this idea, because some disabilities can cause people to be credulous (or as the literature might say, “naïve” or “overly trusting”). But it also bothers me because society tends to err on the side of disbelief in cases when I think people should err on the side of belief – such as when someone says they have been sexually assaulted, or talks about experiencing discrimination. Even though I’ve experienced people lying about these things firsthand, I still think it’s much more common for people to tell the truth but be disbelieved. So I get mad when I see media portrayals of people lying about rape or faking disability, because in real life rape survivors and disabled people get accused of faking it all the time, and I don’t think that’s right.

So I’m left in a difficult situation. I’m hard-wired to believe, and ethically I suppose I am pro-belief, but at the same time I know that sometimes people lie and that sometimes believing people means you will be used or hurt. I don’t want to be the cold-hearted skeptic who believes that ADHD was invented by Big Pharma, and I don’t want to be the dupe fleeing the Martian invasion. Is there a middle ground here?

If I figure it out, I’ll be sure to let you know.

Headlines: Abuse and Empathy

2011-04-16T12:24:00.001-07:00

(WARNING: this post discusses child abuse)

We are two weeks into Autism Awareness Month and I count three casualties so far. Two stories in the news this week, of three autistic children murdered or abused by their parents and caretakers.

In Washington, two autistic boys (ages 5 and 7) were discovered locked in a cage, where their father and his fiancee kept them every day, in unsanitary conditions. They weren't allowed to walk around the house or to go to school. I don't know their names. Their father, John Eckhart, told police: "What am I supposed to do? Let them run around the house? They're autistic."

In Massachusetts, Kristin LaBrie was found guilty of "attempted murder, assault and battery on a disabled person and a child, and child endangerment," after she withheld chemotherapy drugs from her 9-year-old autistic son, Jeremy Fraser. This actually happened years ago, but was in the news again this week because of the sentencing. Jeremy was non-verbal and had lymphoma (blood cancer). He had been getting treatment at a local hospital, and his cancer was in remission. When he was moved home from the hospital, doctors gave his mother medication to give to him, and predicted that he would recover. But LaBrie did not administer the drugs, and Jeremy's cancer recurred, this time as leukemia. Jeremy died in March 2009. This week, LaBrie was sentenced to 8-10 years in jail, and 5 years on probation.

These are only the cases which have made it into the news this week. There are many more autistic people out there, right now, facing abuse and neglect in their homes, in their schools, in institutions. Their suffering is being permitted, hidden, or ignored.

Autism "experts" have already spoken up, defending the parents involved in these two cases. Neatha Lefevre, of the Autism Society of Washington, presented a stunningly sunny picture of the Oregon case. She told reporters: “The behaviors [of an autistic child] can be very challenging." Referring to Eckhart, who kept his sons in a dirty cage, she said, "When [parents] do this extreme, they feel this is the safest way to keep their children. The family will choose extremes because they don’t have good information.”

As for the Massachusetts case, apparently even the prosecutor "[expressed] sympathy for the challenges of caring for a sick, disabled child." TIME Magazine ran an article which began by asking readers to place themselves in Kristin LaBrie's shoes: "Imagine you are a single mother suffering from depression, overwhelmed with caring for an autistic, nonverbal and developmentally disabled son. If he were diagnosed with cancer, what would you do?" The article quotes a Boston-area attorney as saying:

"It can be so overwhelming for a single parent to deal with a child who is autistic, nonverbal, and developmentally delayed. It is cruel to add to that burden a diagnosis of cancer and a requirement that the mom administer medicine that will cause the child even more pain."

TIME also quotes medical ethicist Cynthia Rushton, whose take on a mother withholding life-saving drugs was: "I suspect this mother was really trying to do the best she could for him... what does it mean to be a good parent in this circumstance?" The article's author writes, "Was justice done? It's hard to know. Certainly, disabled children have rights. But moms do too, and it appears that LaBrie did not have adequate support."

As with most cases in which a parent abuses or murders a disabled child, there are a lot of voices urging us to feel empathy for the parent, to imagine how hard it is to have an autistic child. As far as I know, these "experts" have yet feel empathy for the child, to imagine how hard it is to be an autistic child with abusive or murderous parents.

Meanwhile, former PBS news anchor Robert MacNeil is returning to television with a special report called Autism Now. In a promotional interview, MacNeil described autism this way:

"It delays the most -- delays or impairs for life -- the most human thing we have, which is our ability to look into each others eyes and feel that other person's existence and what might be going on in their mind, and to empathize with them. That is denied -- largely denied -- to children with autism."

Rachel Cohen-Rottenberg addresses this claim with an open letter, posted here.

Every day, autistic people are being murdered and abused by people who are supposed to provide them with love and care. And every day, people tell each other that autistic people are the ones who lack empathy, never pointing out that often, it is neurotypical people who do not have empathy for us.

Let's take a moment to remember the connection between people who speak about us as though we are not human and people who treat us inhumanely.

Autism Awareness Month (Self-Advocacy Remix)

2011-04-04T00:06:00.000-07:00

So, April is Autism Awareness Month. This is, unsurprisingly, a month dedicated to making neurotypical people (people who don't have autism or other brain disabilities) aware of autism. Like any other time when a lot of people are talking about autism, the opinions of actual autistic people often get ignored. So here are some things that I, as an autistic person, would like non-autistic people to be aware of during Autism Awareness Month.

1. Discussions about autism should prominently feature the thoughts and opinions of autistic people.
Just like discussions about women should center around women, and not, you know, their husbands, brothers, fathers, boyfriends, and any other men in their lives. If you can't understand why someone who has a particular disability (or any other kind of identity, for that matter) would know more about it than someone who doesn't, then I don't know what to tell you.

If you want to learn more about autism, watch "In My Language." Read "Don't Mourn For Us." Don’t trust people who don’t have the experience of being autistic to tell you all about us.

2. Yes, autistic people have feelings.
Again, I think this is pretty obvious, but a lot of people tend to think we don't feel emotion. So for the record: we have feelings. If we don't express those feelings the same way as other people, that does not mean they are not there. If we don't or can't communicate those feelings to you, that also does not mean they are not there.

3. Autistic people also have empathy.
A lot of people believe that autistic people do not experience empathy for others. In my opinion, this is due to a) prejudice and/or b) confusion about the psychological-technical definition vs. the commonly-used definition of empathy. We don't lack the ability to share other people's pain or happiness, which is how the word "empathy" is commonly used. What many of us do lack is the ability to tell what someone else is thinking or feeling without them telling us. I don't really think this is a big deal because it wouldn't even be a problem if people told other people what they were thinking or feeling instead of trying to make other people figure it out telepathically. This would make communication easier for everyone, including neurotypical folks.

4. Autism isn't [just] a social disability.
It has lots of other components, including cognitive differences, gross and fine motor problems, executive dysfunction, special interests and obsessions, and sensory issues. Focusing on the social problems that autistic people encounter leads to a very inaccurate understanding of autism. It also places too much blame on autistic people for the social ostracism we encounter, a lot of which comes from ableism. For more on the “social skills” issue and why it is messed up, read this.

5. The medical model is not a great way of thinking about autism.
Taking a medical-model approach means viewing autism as a disease in need of a “cure.” According to this view, a person has autism the same way they might have the flu – it’s an illness afflicting them, not an integral part of their personality. This is why people say things like “I want to bring my child out of autism” – because they genuinely believe that inside every autistic person is a normal person waiting to get out.

The reality is that autism doesn’t work that way. It’s built into our brains, and though each person’s brain grows and changes as they get older, we will always be autistic. This is who we are, and a lot of us are just fine with that. Therefore…

6. Having a passionate interest in making sure that no more autistic people exist is actually kind of offensive.
Seriously, think about this one. Think about an identity that you have, something important, something that makes you who you are. Now imagine how you would feel if there were lots of widely-respected groups devoted to making sure that no one who fit that description, no one like you, would ever be born again. This is one of the reasons that so many of us oppose research into the causes of autism: even though finding out more about the human brain is usually really awesome, in this case we fear any research into cause would just lead to a prenatal test for autism, and thence to ability-selective abortions.

7. Passing is not necessarily the best thing for autistic people to do.
A lot of early-intervention therapies for autism focus on getting rid of “weird” autistic behaviors and training children to act more normal. If these children then master the art of conformity and go on to become “indistinguishable” from their neurotypical peers, this is regarded as a great success. But few professionals consider the effect on autistic people of having to hide who we are and present ourselves in a way that feels inauthentic. In fact, though passing may open doors for us that would normally be closed, it often comes at a great psychological cost.

For the most part, people think nothing of asking autistic people to change everything about themselves in order to meet the demands of neurotypical society. But they rarely consider that it is also possible to change those societal demands in order to include autistic people.

I don’t quite understand the meaning of “awareness” in Autism Awareness Month. It’s incredibly rare to meet someone who is unaware of the existence of autism. However, I encounter myths and misinformation about autism wherever I go. I think this is as far as “awareness” can progress when the conversation surrounding a minority group is controlled by the majority. Of course neurotypical people can still contribute valuable insights related to autism – but only we can speak about it from experience. If your goal this April is to become truly aware of the realities of autism, you’re going to have to listen to what we have to say.

April Snark

2011-04-03T12:16:00.000-07:00

Julia’s facebook status: April is Autism Awareness Month. I am a person, not a puzzle. It’s not rocket science.

Me: Oh, that explains why I can't find a box cover with your assembly instructions on it. Silly me!

Julia: It's okay. We have poor visual search skills, remember.

Me: Oh, the epic snark makes April bearable.

Julia: I do not snark. I am not capable of wielding language that well. I don't even know what I am saying.

Me: Oh man, you're right! Actually, I'm not even aware of your existence as a distinct human being, right now. Or mine, for that matter. Gee, how am I typing this?

Julia: It's your facilitator, not you. Duh.

Later:

Me: by the way can I put our snarky status comments up on my blog?

Julia: …I was just about to ask you
If I could do that
YES OF COURSE
(autistics don’t realize that we are individuals because we all actually think exactly the same thing!)

Self-injury, complicated realities, and Big Emotions

2011-03-27T22:27:00.000-07:00

[TRIGGER WARNING for discussion of self-injury, obviously.]

Tonight, I'm thinking about Sam.

Sam is a real kid, but he isn't really named Sam. I worked with him last summer. He was about eight years old and nonverbal, and he often seemed very frustrated with the language barrier between him and other people. He was small and blond and energetic. Oh, and he bit himself. A lot.

Sam would put his fingers in his mouth and just chew, until layers of skin were missing from the pads of his fingers. The staff worried about infection and permanent damage, and tried their best to discourage this habit. But I was more than worried. Whenever I saw Sam chewing on his fingers, my heart beat faster and my stomach felt sick.

I'd felt this horror before. In high school, I had a few friends who cut or bit or burned themselves, and I found this very difficult to deal with. The same horror that I felt with Sam would rise up inside me, with the same result – I couldn't let go of my Big Emotions and just talk with my friends, person to person, about what they were going through. This meant that I often handled the issue in a really clumsy way. I would assume that if my friends hurt themselves, it meant they were feeling certain things, and I didn't quite understand when they tried to tell me that my assumption was wrong. Worse, I would sometimes get so caught up in my Big Emotions that any discussion of self-injury ended with me crying about my feelings, rather than supporting my friends.

Although Sam and I never had a conversation, the same clumsiness started to creep into my work with him. As I got caught up in my horror, I forgot how to relate to him as another person, and this meant I didn't work with him as well as I could have.

Fortunately, Sam and I had a breakthrough. One day, as we sat in a circle watching some other kids practice their handshakes, Sam was chewing on his fingers. I gently pulled his hand down, and then gave him my hand to play with instead. By that time I'd decided that Sam didn't bite for the sake of biting. He did it because of how it felt – on a sensory or emotional level, I couldn't tell. At any rate, I knew he wasn't going to bite me. And he didn't. He turned my hand over and investigated the cracked spots on my fingers, where I had picked at the skin.

It wasn't until I saw his raw fingertips right up against mine that I realized we might have something in common.

You see, I kind of, sort of, self-injure too. I don't do any of the things that people think of when they hear the phrase "self-injury." I compulsively pick at my skin, sometimes to the point of bleeding, scabbing or scarring. This is essentially a stim – I'm driven to it, and I find it a very absorbing activity. A tendency toward acne and skin irritation facilitates this by always providing me with some blemish to pick at.

I've heard that picking at one's skin is generally thought of as a "secondary behavior" to more serious forms of self-injury such as cutting. For that reason, I'm hesitant to write about myself as someone who self-injures because I don't want to appropriate other people's experience. But thinking that other people's behavior might come from the same need as mine does helps me understand, and even just making the connection helps me interact with people in a more human, less freaked-out way.

A lot of people bring up self-injury when they are talking about how horrible autism is. They'll give examples of autistic people harming themselves, and use those to fuel their argument that autism shouldn't exist. Amanda wrote about that in her excellent post on disability-related logical fallacies (scroll down to "Shocking Behavior Fallacy"). Basically, people take the shock and discomfort that they feel when contemplating self-injury, and turn that into a prejudiced argument.

Well, I have a lot of friends who self-injure sometimes, both autistic and not. I have found that if I want to help them, listening to what they have to say works far better than jumping all over them with my shock and discomfort. What I learned, once I started listening, is that self-injury means different things to each person. Some of my friends do it in a stimmy way. Some of them do it to cope with stress. Some of them do it for the sensory input. Some of them have found ways to do it that they find healthy and safe. Some have done themselves permanent damage. Some have become addicted and are trying to quit. Some of them would like to stop doing it, but can't make it their top priority right now, or don't have the spoons to give it up. Actually, that last one is pretty much how I feel, too.

My point here, if I have a point, is that self-injury is a really complicated issue, both in general and as it relates to autism. It's different for everyone, and no one is helped by that one-size-fits-all, knee-jerk horror that I used to feel whenever the topic came up. Because that horror wasn't about my friends who were self-injuring – it was about me. And viewing someone else through the lens of your self-centered horror is not a good way to help that person.

One day last summer, when my regular attempts to get Sam's hand out of his mouth had failed, I handed him my prized stim toy, a rubber ball filled with red glitter. Watching him turn the ball through his cracked little hands, I felt the same connection to him that I felt when he held my hand in his, touching my raw patches with his own. After that, I knew there were two ways that I could react to Sam. I could recoil from him, scared of all the ways in which he was Other. Or I could hold his hand and remind myself of all the ways that we are the same.

What Accessible Communication is Not

2011-03-24T22:35:00.000-07:00

If you speak ironically, and then refuse to clarify whether a statement is sarcastic or genuine, your communication is not accessible.

If you are unwilling to explain a concept when someone takes longer to understand it than you might, your communication is not accessible.

If you are asked to slow down, to repeat yourself, to define a term that is not understood, or to stop joking and speak seriously, and you meet this request with contempt, your communication is not accessible.

If you deliberately mislead anyone for the purpose of amusing yourself or others with their gullability, your communication is not accessible (and you are also an asshole).

I'm tired of people who fill every conversation with impassible cognitive barriers.

I'm tired of having to use all of my brainpower just to figure out whether I am being manipulated or told the truth.

I'm tired of the idea that believing another person is a character flaw, an invitation to victimize, a sign of an embarrassingly unsubtle mind.

I'm tired of the assumption that because we're all at college, we can all speak on this distorted and sophisticated plane of half-truths and true lies, and surely we will all understand each other because anyone too dumb to navigate this level of language would never have got here in the first place.

Quiet Hall Woes

2011-02-05T21:01:00.001-08:00

When it's midnight on a quiet hall and your next-door neighbor, who is ill with Random Fever Illness and has mostly lost her voice, knocks on your door and asks politely whether you and your guest will please stop singing along to YouTube videos because she can hear you, the correct response is a quick apology followed by compliance. The correct response is most emphatically not to turn to your friend and burst into giggles, then turn back to your next-door neighbor and say "We half-expected this."

A woman with Multiple Chemical Sensitivity told me once that people sometimes like to "test" her by wearing scented products around her to see whether they will trigger an athsma attack or some other kind of reaction, and then when they inevitably do, these people will say something like, "Sorry, I worried that might happen."

If you were aware of the possibility of that happening, WHY would you do the thing that causes it to happen?

Okay, some background on next-door-neighbor girl, who I'm going to call Judy. Judy is a very nice person and is usually really pleasant to me. But she does enjoy lound noises, and this means that several times this year, I have had to knock on her door and ask her to turn down her music/ flute playing/ midnight singing. And she always complies with my request, as she did tonight, though sometimes not without passive-aggressive comments. (To be fair, I have to add that I was definitely passive-aggressive earlier today when I responded to her friends' shrieks of laughter by asking if they were okay.)

And I had sort of thought that Judy's repeated rule-breaking and noise-making was just done out of her desire to hear loud sounds and not with any thought of me. I didn't judge her for this because everyone sometimes does things that they think are fun without considering what the implications will be for other people. But when she said to me -- through giggles! -- "We half-expected this"... That kind of changed my mind.

Because if you're doing something and thinking "This will probably make the person living next to me feel so bad that she is moved to ask me to stop," isn't the right response to refrain from doing that thing?

This might be unfair to Judy for a number of reasons. Probably the most important reason I might be shortchanging her is that, while I have asked her on several occasions to turn down her noise, I have never explained my disability or sensory issues to her. I have never told her that last year I was trapped in my room for four hours because loud music from the floor above messed with my brain so much that I couldn't remember how to get out. I have never explained to her that even a faint noise, even a constant noise, even a noise that she would easily tune out can make me feel like six kinds of shit. I've never told her that from my room I can hear the house fellow's baby crying and cars backing up and people taking showers and pulling paper towels from the paper towel dispenser, and layering her singing over all this -- at midnight, when I'm sick and exhausted and even more lacking in spoons than usual -- is just too much. I probably should tell her all this, and maybe I will, but at the same time I feel like I shouldn't have to.

Because this is a quiet hall and I chose to live on a quiet hall for a reason, and that reason is that in a quiet hall you are required to keep noise down to a level where it can't be heard in the hallway or other rooms. And you're required to comply with requests to turn down your noise.

I feel like people who want to be loud at all hours but still choose to live on quiet halls are like non-disabled people who use disabled parking spaces. They can live anywhere they fucking want; I can only live here.

Community: I don't think it means what you think it means

2011-02-02T11:47:00.000-08:00

I've been noticing something that's been bothering me a lot, and that is the way the phrases "autism community" and "autistic community" are used.

I find that when these phrases are used, in all sorts of media, they tend to refer to parents, siblings, grandparents, friends, and lovers of autistic people, as well as doctors, therapists, behaviorists, staff, and other professionals who work with autistic people. Who is not likely to be consulted when some journalist or blogger needs the perspective of "the autism community"? Actual autistic people.

Guys, I think this is a problem.

For those of you who like analogies (and I really do), imagine if whenever someone used the phrase "the gay community," they were actually referring to PFLAG, a group for straight allies. That would be not so good, right? Because as lovely as PFLAG is, they are by definition mostly straight people (not that gay people can't be parents and friends of other gay people, but I don't think that's what PFLAG is for) and therefore not a good choice to be the voice of "the gay community."

But actually, the way the phrase "autistic community" gets used is even worse than that hypothetical situation. Because PFLAG is at least genuinely supportive of gay rights. On the other hand, a lot of the parent-and-professional groups that get referred to as "the autistic community" really want autism -- and therefore, autistic people -- to go away forever. In my opinion, this is not good community-building sentiment.

I think this is fairly self-explanatory: if you want a community to be eliminated from the planet, you are not part of that community. You are not even an ally. Hell, why would you want to be part of that community anyway? You obviously don't like us very much.

If you're reading this and wondering whether it really matters how people use the phrase "autism/autistic community," let me tell you what I believe the misuse of this phrase does.

It perpetuates the idea that autistic people as a group can't represent ourselves and need non-autistic people to speak for us. It centers the concerns of neurotypical people in discussions of autism, when really it is our needs, our concerns, our rights that should be prioritized. It means that there are people claiming the support of "the autistic community" for positions that a lot of autistic people find morally offensive. It's one of the tools people use to keep our voices from being heard. In other words, yes, it matters. This is really bad news.

First Encounters

2011-01-28T13:23:00.000-08:00

[This was written for my Introduction to Special Education class. The essay prompt was "What is your first memory of disability?" I don't think it's very good but it's the first time I've ever written all this out, from beginning to end.]

Last year, I had an experience which I think is relevant to this essay. I was filling out a form for a medical appointment, and was utterly bewildered by the question "What is the least you have ever weighed?" The correct answer could only be "6 lbs, 7 oz," but at the same time I doubted my birth weight was what the doctor wanted. I wrote it down anyway, because it was the only honest answer it was possible to give.

Similarly, I'm finding it difficult to identify my first experience with disability. Technically, my entire life is an experience with disability. The process I'm going through now, as I struggle to focus on the "spirit" of the essay prompt and discard its literal meaning, is an excellent example. I can’t pick my first memory of disability, but I can tell you about elementary school. I think that might be what you want.

The first time I knew that my brain was irregular was the day in first grade when I looked around the playground and realized that no one else was sitting alone. After this realization, I ran to join another group of children immediately – not prompted by innate desire, but by fear. What did they know that I didn’t?

Much of my life has been spent answering that question.

I remember walking down a dimly-lit hospital hallway when I was four, away from the specialist who analyzed my gait. I remember the MRI I got when I was ten, and the doctor who frightened me by telling me that MRIs were for people who had things wrong with their brains. I remember being sedated in order to go to the dentist.

My parents tell the story about how my baby sister’s screaming aggravated me so much, I asked them to put her outside. They tell me about how I hid under the table in kindergarten. They tell me about the doctor who told them that I was a genius, and the doctor who told them that I might never go to college, and the doctor who told them that I was perfectly ordinary and the problem was with them, their selfish need to consider their child disabled. My mom tells the story about how when I was seven years old she would ask me to spell words for her.

I had facilitated play-dates. I had shadow tutors, behavioral intervention. In occupational therapy, an energetic woman rolled exercise balls over my body and encouraged me to play on swings. At school, teachers took my books away and told me that recess was for socializing. I tried to play soccer but was terrified of the ball, of the other team, of my team. I was frightened of the lofts in my private school classroom, so my father took me “lofting” when school was over, slowly climbing the ladder until my fear subsided. For years I went to social skills training with a group of other misfit girls. We watched videos. We watched Jake demonstrate the right way to comfort a friend, the wrong way to comfort a friend. We learned how often other people lied.

I was bullied subtly – not with name-calling, but with observations. “You never look at things.” “You daydream too much.” “You’re weird.” “You should see a psychiatrist.” “You suck at sports.” “People call you a freak.” These simple statements terrified me. I was doing everything wrong. They could see. They knew.

When I was nine, my mom sat me down and gave me the name for the strangeness in my head. Three letters to explain everything – the second, parallel education I’d been receiving; my fear of loud noises, of soccer balls, of new foods; the painfully obvious asynchrony between me and my peers. It was like learning my own name. I cried, not because I was unhappy but because I was so profoundly relieved.

You are also my brain: adventures in (in)(ter)dependent living

2011-01-03T16:21:00.000-08:00

I’m at home right now and thinking, as I always do when I’m at home, about my brain.

I use the term “prosthetic brain parts” to refer to any way of externalizing a function which my brain is supposed to do but doesn’t. For example, organization. It’s hard for me to keep even really basic stuff organized, hence my flow chart for leaving the room. (I’m planning a sequel soon which will tell me how to go to bed, because when I stay up too late and get too tired it becomes very difficult for me to remember how to do that.) Other prosthetic brain parts include timers and alarms, which help remind me to transition between activities.

But people can also be prosthetic brain parts. This is the most crucial difference between home and college, and it’s why I’m finding (semi-) independent living at college so difficult. For example, here’s how my executive dysfunction affects my eating, at home and then at college:

At home, Dad generally yells “Come and get it!” after he has finished cooking dinner. This is the first cue which tells me I should get up and go into the kitchen. If I fail to respond to this, someone will call again: “Zoe! Dinner!” This is usually enough to get me to the table. If I am still stuck, all I have to do is hold my hand up and someone will help me to my feet. My girlfriend is visiting with us right now; if she sees that I am stuck, she will call out helpful instructions (“Put your feet on the floor. Now stand up.”).

At college, I don’t forget to eat, as such, but I do forget all the steps involved in getting food (as I forget the steps involved in most things). If I get stuck along the way, no one will come unstick me – I have to unstick myself. The anxiety and effort involved in keeping the steps straight and keeping myself on task can lead me to skip or delay a meal rather than make myself go out and get one. Or I might do dubious things like eat a “meal” of chips and candy from the vending machine. Or I might try to reduce the steps by eating at a restaurant or ordering food delivered, which gives my brain a break but strains my wallet.

Basically: at home there’s no chance of not eating the meal. No matter what happens, I will eat. At college, there is a chance that I will intend to eat and then fail. And just to add another dimension of difficulty to the situation, the possibility of failure and the uncertain outcome of my efforts heighten my anxiety. Remember, I’m already feeling anxiety because of forgetting the steps and having to unstick myself. The more anxiety I feel, the more difficult it is for me to perform advanced brain functions like unsticking myself, and thus the failure becomes cyclical.

There are a lot of scenarios that work out like this. At home, If I’ve been stuck in the bathroom, sitting in the sink not doing anything when I should be getting dressed, someone will knock on the door and ask me if I’m stuck. I can even ask someone to hang out in the bathroom while I’m brushing my teeth and putting on my clothes, in case I get stuck again. At school, I have to be the one to unstick myself. Following simple instructions is easy; unsticking myself is very hard.

At school, during periods of stress, I start to get a sense that I am jerking myself through my life by brute force alone. Every step feels deliberate and requires an intense effort. At home, I no longer have to act as my own drill sergeant just to put on a pair of shoes. I don’t have to watch myself so vigilantly, because other people are there who will help me out.

I feel as though I’m starting to repeat myself, but this is hard to explain, and I want to explain it perfectly. Home is easy. College is hard. This is why.

Now what do I do about it?

I Know Who Baby Knauer Was

2010-12-26T19:46:00.000-08:00

[Trigger warning for discussion of (historical) violence against disabled people.]

Finals week was a weird time to be knocked down by history.

I'd been researching and writing a final paper for my German history class (weeks overdue) on a topic that I've studied before: disabled people in the Nazi regime. Really sad, grim stuff, and I knew that going in.

But here's the thing that I've learned from three years of genocide studies and a lifetime of Holocaust-related neuroses: you know that saying? The one every history major has heard several thousand times? That one death is a tragedy, and a million deaths is a statistic?

Well, it's kind of true.

Not that you can't feel sad about a million deaths. But for me personally, there's something abstract, something incomprehensible about deaths that are presented only as numbers. One death is easier to understand, because all around me are individuals I love, and I know how crushed I would be if one of them died. It's somehow easier for me to conceptualize a death if I know some details about the person who died: their name, something about their life story.

The person I knew as baby Knauer lived for such a short time, there was very little of his life story to tell. Until finals week, I didn't know that story. Now I do. And where before I had been outraged at the injustice of baby Knauer's death, now I feel utter grief.

Let me explain.

Probably everyone who has done research on the Nazi 'euthanasia' program knows about the Knauer case. The basic facts are: a man who for a long time was only known as Herr Knauer petitioned Hitler to have his infant child killed after his child was born blind and with some physical deformities. Hitler sent his personal physician, Karl Brandt, to assess the baby. If Brandt deemed the child "unworthy of life," he was authorized to have the child killed. Brandt decided baby Knauer should die, and baby Knauer did. Soon after this, the children's killing program began, and then the T4 adult killing program. Baby Knauer was the first victim of Nazi 'euthanasia.'

Then, in 2007, historian Ulf Schmidt published a biography of Karl Brandt. In this biography, Schmidt revealed the details of baby Knauer's life, saying that he didn't feel it was right to "place the justifiable claim of the parents for anonymity above the personality and suffering of the first 'euthanasia' victim."

In my school library, I found Schmidt's book and read the section on the Knauer case. Here's what I learned:

Gerhard Herbert Kretschmar was born on February 20th, 1939, in a village called Pomβen. He was blind, and "lacked one leg and part of an arm." Some doctors speculated that he was "feeble-minded" but realistically they probably couldn't have known this at his age. His parents, Richard Gerhardt Kretschmar and Lina Sonja Kretschmar, believed strongly in Nazi ideology, and his father wanted him dead.

Schmidt writes that Richard Kretschmar took Gerhardt to the Leipzig Children's Clinic "in the spring of 1939" -- when Gerhardt was just one or two months old -- and had him institutionalized there. Werner Catel, the head of the clinic, later testified that Herr Kretschmar had wanted him to kill Gerhardt right then, but Catel refused because of legal concerns. (As an aside here, Catel took part in the T4 program later, so when he refused to kill Gerhardt he didn't have any moral problems with infanticide -- he was just concerned about going to jail.) When Catel would not kill Gerhardt, Herr Kretschmar or perhaps one of his relatives petitioned Hitler directly to end the child's life. Hitler sent Karl Brandt to examine Gerhard and decide whether he should live or die. After confirming that Gerhard was blind and physically disabled, Brandt authorized the clinic staff to kill the baby, and Gerhard was murdered on July 25, 1939. He was five months old.

Once I read those names and dates, I couldn't get them out of my head for days. It's strange to think that these few details -- Gerhard's name, his assigned sex, his birth and death dates -- would change my perception of the case. I wish that it didn't matter, that I would feel just as much grief for a nameless child murdered 70 years ago as I would for a named one, but somehow the name is important to me. Today, when parents continue to murder their children, when people call themselves part of the disability community while dreaming of a world without us, it seems vitally important to hold on to that name.

Guilt-allaying things people tell me over the internet

2010-12-04T13:46:00.000-08:00

So I think I've mentioned before that I deal with a lot of guilt due to the amount of late work I turn in in my classes, or the fact that I can't do all my reading -- various lapses of academic performance. But lately people have been saying awesome things, on chat or in emails or in blog posts that I read, that help me put the guilt aside for a little bit. I save these communications, and I take them out and look at them later, and I remind myself that people love me and I am okay.

"You are a very good student. However. There are a lot of ableist expectations for what being a very good student means. I know you have had a tremendous amount of your self worth wrapped up in your academic performance since FOREVER. But you might want to consider whether you want to continue basing your self worth on how well you adhere to standards which are not designed for Zoes."
-Asher

“You and I both space out when we should be working on things. The difference is I meet deadlines more often. The difference is prob because I can pull all-nighters and you stop functioning. It’s not me having better discipline at all. It’s me having more energy.”
-My girlfriend

"I'm so proud of you... the more I learn about ASD the more I admire and respect how you've gone about building your life."
-My dad

"All too often I find myself waiting for the day when I can do shit properly, which more or less amounts to waiting until I'm not disabled anymore. Then I can feel good enough to deserve everything I want. Well my cure is slow in arriving, so I'm just going to do everything I want now, if that's okay with you."
-Amanda, in an amazing post about executive dysfunction

I am a limited resource and I don't know what to do about it

2010-12-02T23:06:00.000-08:00

I’ve found a new way to be productive and it’s exhausting me.

I’m not sure if it’s more or less exhausting than the potent combination of guilt and anxiety produced by procrastination – probably it’s just a different kind of draining.

Today, after two hours cloistered in a library cubicle, working diligently on a late paper, I got stuck on the stairs to the ground floor. A girl passed me on the landing. She said something , and I couldn’t hear what. I had my headphones on, but with the cord yanked out, so I just heard muffled quiet, and felt pressure. The girl glanced back at me a few times. I remembered how to climb the stairs.

Outside of the library, I stood rocking on my heels, getting cold, blowing out clouds, stimming out on stars. It took me a while to gather the energy to walk to my dorm. I felt I’d hit some kind of wall. I thought, I have come to the end of my brain. In high school I had some arrogant idea that my brain was somehow infinite, and only my time was limited.

The moisture on the ground was turning into frost, creating a sparkling effect that first dazzled and then overwhelmed me.

I’m pretty sure I used the last of my spoons to get to my room, or perhaps the penultimate spoon. I have a backlog of German homework to do, but I can’t do it anymore, so now I’m calculating how early I have to get up this morning, how best to bury and wrap my alarm to keep my sleep-deprived self from simply shutting it off and giving up. I’m at that point where I’m so tired that the steps between me and sleep – taking things off the bed, turning off the light, setting and wrapping the clock – seem insurmountable.

So I’m not sleeping. I’m thinking about thinking, worrying about worrying, writing about writing.

In Which I Am Obsessed With Spies

2010-11-20T10:34:00.000-08:00

I like to imagine that I’m a spy. In my fantasy, I travel to interesting places to find out important things. I am elegant and competent. I wear great clothes and I always have a witty comeback, like James Bond but without the sexism.

I can lie perfectly. I can move silently. I can pick locks, hack computers. I can navigate a party with ease, picking up revealing information from the chatter around me. I always get the girl. I speak thirteen languages and have twenty false IDs. When I steal the secret documents from the evil corporation, I don’t leave a trace. I work for the good guys. I get the job done.

In reality, I know that this could never happen. For starters, spying isn’t so glamorous as all that. And spies usually work for the military, which I wouldn’t want to do. But more importantly, I would be a terrible spy. I’m clumsy and easily fatigued. I can’t pick locks or hack computers – I can’t even drive a car. I always think of witty comebacks too late.

I think the reason I fantasize about spying is because I would be such a bad spy. In my real life, I get frustrated a lot. I feel awkward, slow, incompetent. But in my spy fantasy, I always know what to do.

[This is another translated German class assignment. If I write more about my spy obsession I'll definitely discuss spying as an analogy for passing, moving through a world that you don't exactly belong in and trying above all else to keep that strangeness from showing. Trying to spot your contacts. Deciding when and how to blow your cover. Though I would of course be a bad spy, in some ways my life is kind of like spying.]

The Long Way

2010-11-06T14:14:00.000-07:00

[Image description: an inaccurately-drawn map of a room in my college dining hall, with two lines indicating different paths to a table. One path is a relatively straight line through an area free of obstacles, and this is labeled "ideal route." The other path is needlessly circuitous and is labeled "my route."]

I haven't posted a post in exactly one month today. This makes me sad, because I want to write a lot of posts. I'm working on a long, heartfelt one right now, an essay about a movie I saw recently, but that's not done yet. So I'm posting this comic I drew instead.

This is a hyperbolic drawing; I don't really take a path that is that convoluted. But it is true that I have trouble with spatial awareness and often can't identify the best route between two points. My friends have noticed that I'm just as likely to go the long, crowded way as the short, easy way. Or if I'm leaving a building, I might leave through the door on the opposite side from where I need to go next, and then walk around the entire building to get to my destination.

Now that my friends have pointed this out to me, I'm trying to memorize short routes between different buildings so that I can save myself time. In the meantime, I've found that if I wave to my friends from across the dining hall, they are more than happy to point me in the right direction.

Better Living Through Flowcharts

2010-10-06T20:46:00.001-07:00

Here’s a moment from Glee that stuck with me for a long time. Some of the main characters are talking in the choir room, and they look over and see that Brittany, the show’s “dumb blond,” has been sitting there the whole time. When they ask her what she’s doing there, she says that she took some cold medicine and fell asleep, and when she woke up, “I forgot how to leave.” Cue laughter as viewers think to themselves, “Brittany’s so dumb, she forgets how to leave a room.”

I didn’t laugh when I saw this, because this is actually something that I regularly do.

This is a bit difficult to explain. The concept of how to leave a room is something that I understand at all times, but within that concept there are tiny, practical steps that I have to keep lined up in my head. If I don’t have to take anything with me, the steps might simply be “stand up, walk to door, open door.” (This can create its own set of problems if I’m having difficulty making my body respond to the commands of my brain, which does occasionally happen.) But if I do have to take things with me, I have to organize and gather my things before I can leave. If I have to get dressed, or even leave and get showered and come back and get dressed, and leave and brush my teeth and come back and then gather my things – that’s a lot of steps.

Here’s what happens: I’m in my room in the morning, and I’m tired because I haven’t gotten enough sleep, and I can’t get all the steps lined up right. Maybe I’ve just removed my pajama top and I can’t remember what to do. Some part of my brain knows that the next step is to put on a bathrobe before proceeding to the shower, but I’m having trouble accessing that information. In this foggy state, I look around the room and I see my laptop. Aha! I can check all my favorite blogs! Ten or twenty minutes later, I realize that my class starts pretty soon and I haven’t even put my bathrobe on.

That’s pretty much a typical morning for me. Under more adverse circumstances, the problem gets worse. One memorable Saturday morning last semester, I awoke to pounding music echoing through my ceiling. That morning, the process of showering, dressing, and leaving took four hours. That’s four hours spent mostly in my room, crying in frustration because the noise was so awful and I wanted more than anything to go away, but I didn’t know how.

I was telling my girlfriend about the problem of getting stuck in my room, and she came up with an ingenious solution. (By the way, guys, this is why college is awesome: when I tell my friends about stuff like this, they are supportive and even come up with ideas instead of, say, laughing nervously or calling me a freak.) She proposed that if I made myself a list of the steps necessary to exit the room, I could reference this list whenever I was confused.

Because I am a giant nerd, the proposed list ended up as a flowchart:

[Image: a hand-drawn flow chart which gives the viewer detailed instructions in how to leave the room, with separate paths for showering and not showering, and later two different ways to pack for going out.]

This is currently taped to the door of my closet and I’ve referenced it several times. Hopefully it will help me keep on track in the mornings and get out of the room in an emergency. I’m very happy with it. I think part of learning to live more independently is finding ways to make my life easier.

Limitations

2010-09-23T14:49:00.000-07:00

I had great plans for this year.

Last semester, I started out on a bad note, feeling stuck and overwhelmed and not getting any of my readings done. This year, I decided I would start out the semester more organized. I would plan better, and overcome my anxiety so that I could be prepared for my classes. Instead of feeling disconnected from the subjects I was studying, I would do all my readings and feel fully engaged. I would emerge knowledgeable and triumphant. It was going to be amazing.

So I started my semester with the goal of preparing for class. And for maybe two glorious weeks, I came to all my classes with all or most of the reading done, knowing exactly what we were going to be talking about and prepared to make insightful comments. Finally, I felt like a good student, a good person.

I did some of this by being more organized and planning better, and this was definitely a good thing. But ultimately, here is where the extra reading time was coming out of:

- down time, relaxing by myself
- social time with friends
- time spent doing laundry and unpacking
- sleep

As a result of this, the wonderful feeling of being a good student came with some unpleasant side effects. I felt unhappy, and sort of purposeless, with so much time spent cramming for class. I got more fatigued, until last Thursday I fell asleep in the middle of a really fascinating lecture. And I felt so mentally tired that I spent most of the weekend lying on my bed listening to an audiobook, panicking about getting my work done but somehow unable to attend to it. Halfway through Saturday I decided that if I wasn’t going to do work, I should at least get up and clean my room. I then continued to lie on my bed, despairing of my ability to do things.

Three weeks into the school year, I successfully burnt myself out.

The lesson learned from this lovely episode is that I can’t do all my reading. I don’t have the time to devote to it, the brainpower to process it all, or the emotional strength to deal a life of academic isolation.

I feel guilty about this – like I’m a bad student, a slacker, a cheater. I’m not the scholar I wanted to be. I also feel sad when I think about what I’m missing. I mean, in one of my history classes we’re studying Nazi Germany, a subject upon which I have spent countless hours perseverating. I want to do this reading, and I’m sad that I can’t.

But at the same time, I feel kind of liberated. I don’t have to walk around haunted by the specter of chapters unread, thinking I’m a failure, convincing myself I really will read those last 50 pages and then falling short. I can admit to myself that I won’t get around to reading those 50 pages, or the introduction to the next history text, or the poem we’ll be looking at in German on Friday. I can go out for dinner with friends, or read blogs, or do my fucking laundry, even if I haven’t done my reading. And I shouldn’t feel guilty about it (though I do). I know that by not finishing my reading, I’m preserving my brain to fight another day.

Tragedy Time

2010-09-17T19:31:00.000-07:00

[I wrote a slightly less polished version of this in German for class last week]

I’m talking with a friend, and it’s going well. She wants to know what I did over the summer. Because I trust her, I tell her that I volunteered at a program for autistic kids.

Her eyebrows go up like she’s watching a sad movie. “That’s so heavy!” she exclaims. “Was it really hard?”

I don’t know what to tell her. I try to explain that being autistic isn’t a tragedy like people think. I tell her that the kids are still kids, that actually the hardest part was getting along with my co-workers. But I didn’t like her breathy “that’s so heavy!”, so there are some things she doesn’t get to know. She won’t find out that when I was a kid, I went through the same program.

---

A lot of people think that autism is a tragedy. Some say it’s so bad that we have to find the genes, we have to prevent it. They say that autistic kids ruin their parents lives, that autistic adults ruin their own lives. They think that the world would be better without autism. Without us.

---

People say, “You don’t seem disabled.” But they always have an explanation for why I’m so different. “You don’t seem disabled,” they say, “but you do seem kinda weird.” Or “you seem shy.” “I thought that you were just really sheltered.” “I thought that you were from another country.” “I thought you were on drugs.” People make up lots of explanations for me. Autism is never one of them.

Lots of people don’t want to think about disability, about autism. They’re afraid of these things. They think that disability is the same thing as sadness. That autism is so heavy. They don’t want to change their minds.

“You don’t seem disabled.” “I thought it was something else.”

Of course you did.

---

“What did you do over the summer?” another friend asks.

“Not much,” I say. “How about you?”

Respect, and the Other R-word

2010-09-14T14:22:00.000-07:00

At dinner last week, I was talking to one of my friends about the drama department. Across the table, another friend – I’ll call her Melanie – covered her mouth with her hand as if she had just cursed inappropriately. “Oh no!” she moaned.

My girlfriend leaned towards her and patted her on the shoulder. “If you start to say it, just say ‘ridiculous’ instead,” she advised.

I realized what had happened – Melanie had used the r-word, and then realized that she had done it. She looked up at me and said “I’m sorry! I feel like I let you down.”

I got up and walked around the table to give her a hug.

At first it was hard for my friends to remember even to avoid the r-word around me, let alone to cut it out of their vocabularies entirely. But gradually, they all stopped saying the word. They started telling me that now, they cringed when they heard someone else say it. I saw them explain to other people why using the r-word was wrong. My old roommate even asked his colleagues at his summer job to stop using it.

I think that now, they all understand that the r-word has real impact, that it hurts me and other disabled people. They didn’t all think that last year. But they got where they are now because they took me seriously when I said I didn’t want to hear that word from my friends.

I have the best friends ever.

Things To Do At College

2010-09-04T22:29:00.000-07:00

It was windy today. I went outside and I found a place with benches and bushes in a circle and I walked in figure eights and watched the wind move the trees around. I saw the flag on Main building waving and I heard it snapping. There was an airplane in the sky and I watched it for a long time. I sat on the bench and I leaned back on my arms and let my head rest on my shoulder in a lopsided way and watched the trees and felt the wind. I felt so unfocused, noticing all the sounds and all the movement but not so much specific things like squirrels and people. I felt happy in an uncomplicated way.

This might sound to some people like a spiritual experience or a deep connection to nature or a drug trip. It isn't anything so complicated as that, simply that being out in the wind is an incredibly absorbing experience. It's auditory, visual, and tactile without overwhelming any of those senses. Because of my sensory issues I find great entertainment in experiences that some people don't even notice. Watching snow fall is pleasantly stimulating in the way that I imagine watching action movies is stimulating to neurotypical people. Walking in figure eights in the wind -- maybe that's like a really great concert.

This time last year, I wouldn't have let myself stim in public, and because dorm rooms lack both wind and trees, I would have gone without this experience entirely. This year is beginning differently, with more beauty, and less shame.

In Which Everything Seems Pretty Awful

2010-08-31T19:47:00.000-07:00

The fall semester has begun and my executive dysfunction is seriously bothering me.

I’m currently being screwed over by my lapse in planning during class registration last semester. At that point, I somehow thought that I could take only one history class in the fall. Upon arriving at school, I remembered that I actually need a major and perhaps I should check up on the major requirements, and I discovered that I’m seriously behind in terms of history coursework. Additionally, I kind of want an education correlate in case I decide to go into special education or a similar field.

This means that I’m scrambling to register for new classes, which takes up a lot of my time, and if I get into new classes I’ll be behind on the readings for those classes, and I’ll have to catch up, which will take up a lot more of my time.

I should have planned for this last semester. I should have known I would need more history classes. I should have signed up to get field work credit for the volunteer work I did over the summer. I shouldn’t be writing this post right now.

I’d forgotten how much work I do at college. I have to work to make myself work. This might sound frivolous and lazy, as though I just can’t muster up the willpower to overcome a hedonistic urge to enjoy myself when I should be working. In fact, if you were to check up on me while I’m attempting to make myself do work, you would find me in distress as I attempt to focus on a task but somehow always end up doing something else. The guilt and anxiety that this produces are problems in their own right, and the worse I feel the harder it is for me to focus. Can you spot a pattern here? If you picked “downward spiral,” you’re correct.

As I write this, I am looking at the pile of clothing that I have yet to fold and put away, the bags I haven’t unpacked, the bookshelf I haven’t assembled. As I write this, I should be doing my German exercises, or reading for my history class. Yet somehow I ended up writing this, almost without noticing that I was beginning to do something counterproductive.

Maybe in a few days things will be sorted out. Maybe I’ll find new classes. Maybe this semester won’t end with gloom and doom and late papers in every class and the academic apocalypse. Maybe I’ll learn to get things done on time. Maybe I’ll get more control of my life. Until then, I’ll be playing catch-up. Again.

Disability and Division

2010-08-20T00:12:00.000-07:00

One of the attitudes about autism that really bothers me is the idea that autistic people are divided into neat little groups that have nothing to do with each other. Functioning labels – “high-functioning” versus “low-functioning” – exist to separate autistic people into categories. Once these categories have been formed, it’s easy to start generalizing about differences between the groups. Some people might say that “high-functioning” autistics are valuable and “low-functioning” autistics are not. Others might say that “low-functioning” autistics are actually autistic and “high-functioning” autistics are really just normal people who want an excuse to be mean. There’s a lot of prejudice reflected in these categorizations, and no truth.

Curebies – that’s a somewhat pejorative term for neurotypicals who want a cure for autism – are often really into the categorizing thing. If you say to them that as an autistic person, you find the idea of eliminating autism offensive and scary, they will quickly try to divide you from the people that they want to cure. They might say, “You can type/talk/pass/go to school, so you’re not really autistic.” They might say, “Of course we don’t want a cure for people like you; we want a cure for people with more severe autism.” They might say, “How dare you think that you have anything in common with my severely autistic child?”

Answer: I think I have something in common with another autistic person because we are both autistic.

Sadly, some autistic people wouldn’t agree. “Aspie” supremacists protest the removal of Asperger’s syndrome from the DSM because they don’t want to share a diagnosis with people who “might have to wear adult diapers and maybe a head-restraining device.” (Amanda at Ballastexistenz and Bev at Square 8 have both written great posts about why this attitude is such a problem.)

When I say that I identify as autistic, or start talking about disability politics, people sometimes bring up the perceived categories of autism. They ask me, “Do you know what severe autism looks like? What do you have in common with people like that? Why shouldn’t we look for a cure for those people?”

Those people. People like that, as opposed to people like me.

My parents were alarmed when I came home from college with a renewed interest in disability. They’d spent a lot of time teaching me how to appear neurotypical, and here I was talking about the autism spectrum, and identifying with the autistic community. They recommended that I spend the summer working with non-verbal, non-passing autistic people, people who they thought of as entirely different from me. I think they hoped that when I met these people, I would get scared and decide that I didn’t have anything in common with them after all.

It didn’t work.

Earlier this week I was approved to start an ASAN chapter based at my school. I’ve spent the summer with autistic kids, and now I’m looking forward to hanging out with other autistic adults during the school year. One of the things that I really want is for the chapter to be representative of people across the spectrum – verbal and non-verbal, passing and non-passing. I don’t want to stand apart from other autistic adults just because they do things that some neurotypicals think are scary. I don’t want to be another person trying to put as much distance as possible between myself and “those people.” “Those people” bear the brunt of our society’s horrible ideas about autism. “Those people” are just as much a part of self-advocacy as I am.

Those people. People like that. People like me.

On Lea's Terms

2010-08-10T18:47:00.000-07:00

As I said previously, this summer I am volunteering at a program for autistic kids, run by a group of behaviorists from whom I got help as a child. Working with the kids can be really fun and rewarding, but sometimes, the other staff talk about the kids in a way that confuses and distresses me.

Take, for example, Lea (all names are changed). Lea is maybe 9 years old and she’s bilingual, which I think is really cool. She’s autistic, and she also has selective mutism, which is a kind of insensitive term meaning that there’s nothing physically keeping her from speaking, but she often doesn’t speak anyway. The staff where I work decided that actively pushing Lea to speak might upset her and make things worse, but learning to use speech more often was one of Lea’s long-term program goals.

Anyway, lately Lea is speaking more and more, which everyone is pretty happy about. But one of my coworkers seemed to have a problem: “It’s great that Lea is talking now, but she only wants to talk on her own terms.”

For me, communication – how and when one communicates, and what one wishes to say – is an intensely personal thing. I see nothing wrong with someone wanting to regulate their own communication. I understand the need to teach kids when to be quiet and listen when other people are speaking, but this wasn’t just about that – my coworker seemed to feel personally insulted by Lea’s desire to decide for herself when she speaks and when she is silent. Talking should be on adult terms. Talking should be on neurotypical terms. Talking should not be on Lea’s terms.

When my coworker said that, I think she was worrying about the non-verbal communication exercise. This is like a big silent art project, in which one kid, using only gestures, directs another kid in how to lay the paint and glitter out on the paper. Since non-verbal communication is difficult for many autistic people, including Lea, some of the other staff were worried that Lea would use her newly-available spoken communication instead.

She needn’t have worried. Lea was silent throughout the activity, although she had a lot of difficulty with the gestures. Her partner was Alice, the neurotypical sister of one of the autistic boys in the program. Alice seemed outraged that Lea was having difficulty understanding her directions. She angrily shook her head and stamped her foot when Lea made a circle instead of a dot. She held up her little hands and aggressively mouthed What? What? when Lea lost focus and stopped giving non-verbal instructions. A few times Alice even broke the no-talking rule to tell Lea that Lea wasn’t doing it right. I couldn’t tell what Lea was feeling, but to me she did not look happy.

“Alice was rude to Lea today,” I pointed out to the other staff, as we sorted the art supplies after the kids had left. “Does Alice have goals?”

“Oh, no, Alice is – Alice is typically-developing,” said my coworker. “She kind of sets an example for the other kids, right? She doesn’t have goals.”

Sigh.

About Stimming

2010-08-08T11:37:00.000-07:00

I used to go everywhere with a rubber bouncy ball in each hand. The weight and pressure of these in my palm, and the position of my hand as I curled my fingers around them, became second nature. Probably they provided reassuring proprioceptive feedback – not that I knew or cared about this. My rubber bouncy balls comforted me.

But when I stopped being a toddler and started being a child, there were so many things I had to do with my hands. I had to learn to make letters and tie knots. I couldn’t hold onto a rubber ball while doing that. And there were more and more places where it was really not “appropriate” for someone my age to carry a set of bouncy balls around. So I stopped carrying the bouncy balls.

I used to flap my hands and arms. Sometimes I would jump up and down when I did this. It was something I found myself doing when I was happy, when I wanted to feel myself moving through space. I tried soccer and hated it. In soccer everyone else seemed to know where to go, and I was always confused. Flapping my hands and jumping up and down, though – that came naturally.

But one day, when I was maybe nine or ten, my mom saw me jumping and flapping across the courtyard of a shopping center. She pulled me aside, and in frightened tones, told me that I shouldn’t flap my hands. Only infants did that, she said, and people who were mentally retarded. I feel it’s important to note, at this point, that my parents have mostly been lovely as far as my disability is concerned. What my mom said was the exception rather than the rule. But it made a lasting impression. I stopped flapping my hands.

I used to hum constantly. It was calming to match the music in my head to noises I could hear and feel. The music kept me moving through my day, kept me from worrying too much. I focused better when I was humming.

But my classmates hated to hear me humming in class, not only during lectures but even in labs or while laboring over art projects. The humming disrupted my classes and embarrassed my friends. In ninth grade Geometry, one exasperated girl threw peanuts at me until I shut up. Her actions, though more pragmatic than malicious, served as a wake-up call. I stopped humming.

Over the next several years, whenever I would catch myself humming – or rocking my body, or tapping my fingers, or moving my hands in a strange way – I would instantly force myself to be still and silent. I never wondered why I stopped myself from stimming – I only knew that stopping myself was the thing to do. I was cured of my self-regulatory behaviors.

And then I went to college.

At college, I was responsible for myself all the time. I had to make myself go to class and work on time, eat meals, take showers. There was no one there to call me to dinner, or to give helpful reminders that I’d be late for my class if I didn’t leave now, or to restart me if I got stuck while looking for a shirt and ended up sitting on the floor, spaced out and half-dressed. My workload increased, but my ability to plan and schedule did not improve. In class, the theories and abstractions and imprecise language hurt my head.

I had to relearn how to stim. I no longer had the luxury of rejecting any coping mechanism that worked. To stand in line at the dining center, surrounded by hordes of chatting students, I had to rock back and forth. To focus myself between work and class, I had to flap a hand for a few minutes. To hold myself together that one time I shut down at work, I had to hum. And I began carrying a rubber bouncy ball in my purse, just in case.

Looking normal worked well for me for a few years, and then it made me miserable. I find it ironic that when my teachers and parents told me to stop stimming, their goal was the same as when they taught me social skills or took me to occupational therapy: to help me live in the world with the minimum of suffering. But I suffered more when I couldn’t stim, and I came back to it like it was a wonderful hobby that I had forgotten about.

I’m volunteering at a program for autistic kids this summer. In elementary school, I worked with shadow tutors from this place; these are the people who taught me how to socialize, how to communicate my feelings, how to look normal, and other important things. But there was one thing important thing they left out: they didn’t teach me that I got to control how I behaved, or that it was okay not to pass. While I learned helpful things like sharing and cooperation, I also learned that stimming was bad, and passing was good, and when I got to college that really messed me up.

I think passing is important if you don’t want to spend all your time dealing with people’s prejudice. Obviously things shouldn’t be this way, but they are. However. I also think that people should have a lot of options available, and should be able to decide at any moment whether it’s more important to pass or to feel good. And that is what I think we should teach people: that sometimes it can be helpful to know how to pass, but that doesn’t mean you have to forget how to stim.

Anthropology

2010-08-02T17:53:00.000-07:00

(You can click this to make it bigger if you like)

[Image description: a drawn comic in which I stand facing a lanky college guy. The guy is holding a cigarette and wearing a T-shirt which reads "I am totally not a hipster". I am holding a microphone, and a speech bubble indicates that I am saying to him, "May I have a moment of your time to ask you about irony?"]

This is a comic that I did about the challenges of interacting with people at college. Many college students, especially (but not exclusively) people who might be identified as hipsters, are really into irony. They are so ironic that they can even manage to be sincere in an ironic way. I'm not quite sure how that works.

Like a lot of people on the autism spectrum, I can have problems telling when other people are being ironic. I'm pretty good with plain old sarcasm (when someone says one thing but mean the opposite), but I can't get the hang of the meta-irony that hipsters use. Sometimes I have to ask people "What did you mean by that?" or "If you were going to express the same sentiments, but use words that were true, what would you say?"

This creates all kinds of awkward situations because people really aren't used to being asked these kinds of questions. One classmate began laughing, rolling her eyes, and exchanging looks with her friends when I asked her to clarify an ironic comment. And often, when I ask people what they mean by something they have said, they tell me that they don't know. This leaves me wondering: Do people really not know what they mean by what they say?

Do I fail to understand hipsters because they don't understand themselves?

Will other people ever make sense to me?

A Noble Experiment

2010-07-27T13:12:00.000-07:00

I am starting a blog.

It's going to be a blog about disability. Mostly, it will be about my experiences as a disabled person, but I also plan to talk about disability in society, portrayals of disability in the media, ableism and disability activism, and disability history. It’s going to be a place where I can ramble on about things that fascinate me in the hopes that they fascinate other people.

I can think of lots of reasons not to start a blog. I have a livejournal which I never update, and a long history of starting projects I never finish. The internet is a scary place. Talking about one’s disability online is a mildly risky thing to do. The autism blogging community is bitterly divided, and online feuds seem to be common.

But I’m starting a blog anyway. In large part, I am doing it because Amanda told me to. But also because the internet is so big, there is room for everything I have to say, and maybe I can talk to some people who have things to say too.