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.

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."

In Which I Am Obsessed With Spies

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

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

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

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

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

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?”

About Stimming

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

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

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

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

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

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

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

And then I went to college.

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

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

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

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

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