Recommended Reading/Watching: Revivification Edition

I used to blog a lot. Since the TPGA dialogues I... haven't, so much. I would like to again.

So to get back in the habit of throwing new text onto this website, a new Recommended Reading post, in two acts.


1) Videos



Fun fact: I can be seen in this video, and so can many of my friends!

If you haven't yet watched the Loud Hands Project video, or read about this exciting new campaign on their fundraising page, you should definitely check it out. If you haven't donated yet, there are 13 days left in which to do so!




Also from Alternate Assessment Productions comes a new take on the "shit X say to Y" meme.


2) Rebuttals

Argument: "Everyone in the special needs community needs to stop getting so darn offended and just get along!"
Rebuttal: I'll Take Offense, If You Don't Mind, by Rachel Cohen-Rottenberg

Argument: "I don't have to listen to what you say about autism because my kid is more severely affected than you/than your kid."
Rebuttal: "My Kid Isn't Like You(rs)!" by Melody at ASParenting

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.

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.

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.

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.

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.

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.

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.

On Lea's Terms

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

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

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

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

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

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

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

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

Sigh.