Thursday, December 1, 2011

How It Works

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.

Tuesday, September 27, 2011

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

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.

Saturday, September 24, 2011

Free CeCe

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 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.

Thursday, September 22, 2011

TPGA Dialogues: Adventures in Talking to People

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.

Friday, September 2, 2011

Ideas for Supporting Disabled Students in School

[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.

Wednesday, August 24, 2011

thoughts about breaking the internet

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.

Tuesday, August 16, 2011

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

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.

Saturday, August 6, 2011

Utopian Daydream

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?

Wednesday, July 27, 2011

A Bad Argument For Inclusion

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.

Wednesday, June 29, 2011

Recommended Reading: Writer's Block Edition

I have been trying to write a post and trying to write a post and trying to write a post. In the meantime, it has been so long since my last post that a friend from college feared that I might be dead. I have things to say! And slowly they are being typed, and eventually they will end up here. In the meantime, here are links:

Amanda recently started posting pieces of the Autistic Passing Project, which is an art project that she made using quotes from anonymous autistic people on the subject of passing. She's done an awesome job of collecting quotes and arranging them in a visually interesting way. Anyone who thinks that trying to be "indistiguishable from peers" makes autistic people happier should read this.

In response to the ridiculousness of Simon Baron-Cohen's latest book, autistic author Rachel Cohen-Rottenberg started the website Autism and Empathy. She has collected a bunch of academic articles refuting the lack-of-empathy myth. She's also accepting submissions!

Why So Much Abuse Is Allowed to Continue in Residential Care is an excellent article published, surprisingly, by TIME. It discusses human nature, Milgram, and the corrupting influence of power. The author also suggests policies which need to be put in place to reduce institutional abuse, such as surprise inspections. The article's one failing is that it does not mention de-institutionalization, which is, of course, the best way to keep disabled people out of abusive institutions.

Finally, here's an awesome disabled historical figure: Götz von Berlichigen, a badass sixteenth-century knight who used a very advanced prosthetic arm and pioneered the phrase "kiss my ass."

Monday, May 9, 2011

Domestic Hate Murder Coverage Style Guide

(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.

Friday, April 29, 2011

Supercrips make each other sad

(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.

Tuesday, April 26, 2011

Assault on Credibility

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.

Saturday, April 16, 2011

Headlines: Abuse and Empathy

(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.

Monday, April 4, 2011

Autism Awareness Month (Self-Advocacy Remix)

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.

Sunday, April 3, 2011

April Snark

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.


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
(autistics don’t realize that we are individuals because we all actually think exactly the same thing!)

Sunday, March 27, 2011

Self-injury, complicated realities, and Big Emotions

[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.

Thursday, March 24, 2011

What Accessible Communication is Not

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.

Thursday, February 10, 2011

Recommended Reading (and Donating)

I have a lot of links to talk up and that means it's time for recommended reading!

Asher wrote Critical Condition about a clinic in San Francisco called Lyon Martin. Lyon Martin provides respectful health care on a sliding scale to women and trans people. One of my friends gets hormones from Lyon Martin, and it has really made a difference for them to have access to this level of care. But Lyon Martin may have to close, and they're asking for donations so that they can stay open. If you can afford it, please donate on their website!

Amanda, Julia and I are starting a new disability group blog! It's called LOVE-NOS, and it's filling the hole that FWD left in our lives. If you want to be a contributor or write a guest post, please let one of us know. All the posts that are currently up there are great, and you should definitely check it out.

Amanda and I also started bad brains wearing clothes, which is kind of silly but also awesome. It's basically a brain disability fashion blog.

Finally, please read Insanely Cruel, which is everything I wanted to say after the Giffords shooting even though it was written before the Giffords shooting. It's about the assumption that anyone who would kill a lot of people must be "crazy," and how that comes from people's unwillingness to acknowledge their own capacity for evil, and how it's really ableist. This piece is short, too, and it's really important and you should just go read it.

Saturday, February 5, 2011

Quiet Hall Woes

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.

Wednesday, February 2, 2011

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

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.

Friday, January 28, 2011

First Encounters

[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.

Monday, January 3, 2011

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

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?