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.

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.

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.

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.

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?

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."