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.

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.

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.


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!)

Guilt-allaying things people tell me over the internet

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

The Long Way

[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

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.

Tragedy Time

[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

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.

A Noble Experiment

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.