Note For Anyone Writing About Me

Guide to Writing About Me

I am an Autistic person,not a person with autism. I am also not Aspergers. The diagnosis isn't even in the DSM anymore, and yes, I agree with the consolidation of all autistic spectrum stuff under one umbrella. I have other issues with the DSM.

I don't like Autism Speaks. I'm Disabled, not differently abled, and I am an Autistic activist. Self-advocate is true, but incomplete.

Citing My Posts

MLA: Zisk, Alyssa Hillary. "Post Title." Yes, That Too. Day Month Year of post. Web. Day Month Year of retrieval.

APA: Zisk, A. H. (Year Month Day of post.) Post Title. [Web log post]. Retrieved from

Friday, March 22, 2013

Why I am not going silent today

Trigger Warning: Silencing of disabled people, probably ableism.

Six Degrees has an event. I do believe they think they have good intentions, and I do believe they think they are trying to listen and help, which is different from believing they actually have those intentions and they are actually trying to do those things.
The event runs from 10am-12pm today, and the idea is to not speak for those two hours, "because some people with autism don't have a choice."
But there are real problems with the event.
I think it's pretty straightforward to state that this is a simulation of disability, which means that Autistic Hoya's critique is relevant. You can find it as black on white here, and white on black here. Disability simulations don't create "I get what it is like to have this disability" in my experience. (Yes, I had to do one for blindness in middle school, and I didn't learn much of anything from it.) If done properly and explained properly, you can simulate what it is like to deal with some of the ableism and inaccessibility issues, but you can't really simulate what it is like to actually be disabled.
For example, you could even explain a not using oral speech thing as getting a taste for how people treat those who do not speak, how people don't want to take the time to communicate with those who do so differently. And if that's what you went in looking to learn about, you could get something out of it. Not the full experience of dealing with it day in and day out for a lifetime, but a taste. It would work especially well if you were using an AAC device for that time, because then it would be clear that you weren't just being kind of quiet during that time. Everyone would know that you were using alternate communication, and they would make judgements based on that, and you would get a taste of that piece of our experience, which is the one that actually needs to be fixed.
Or you could explain it in much the same fashion as the days of silence that other groups have done- as a protest of silencing they face. A day of silence to protest ableist silencing (remembering that behavior is communication, all people communicate) would work well.
But that's not what this one is framed for.
This one suggests that two hours not speaking will explain why autistic people who do not speak have outbursts. (No, it won't. Because it's not just a lack of oral speech that causes outbursts. Communication frustrations are part of the issue, but lack of oral speech and inability to communicate and communication frustration are three different things. No, really. You can have a substitution aphasia that means you have oral speech but not be able to use it to communicate. Without some other form of communication, there won't be communication, which leads to frustration. With another form of communication (AAC is a wonderful thing!) there is the ability to communicate, but frustration can still come from people not being willing to take the time to work with an AAC user, and that's still communication frustration. Or you could be unable to use oral speech but capable of typing. That's a pretty common situation for autistic people, and over the internet, you can't really tell who is a typer and not a talker unless they tell you. And AAC users and talkers and part-time-of-each folks can all have communication frustrations from other people ignoring their communication, not just from problems sending the message.
The event is, I think, conflating lack of oral speech with lack of communication (ironic, considering that the event was promoted in a way that doesn't use oral speech and that most of the discussion of it hasn't used oral speech either.) It's conflating the issues that come from actual communication difficulties with the ones from people reacting badly to those who use AAC. I've spent two hours and longer non-speaking before- properly accommodated, it's not that big a deal. Really, it's not.
And of course, there is the question: Who is this event really about? I know they say it's for autism. Everyone doing anything related to autism says it's for autism. But autism isn't a who. It's a nebulous noun form for autistic, which is an adjective used to describe people whose brains and nervous systems are a certain way. Is the event about autistic people and helping them, is it about making would-be allies feel good about themselves, is it about education? What is the purpose? And does it accomplish that purpose.
I think that the organizers are consciously torn between trying to make it about educating and about helping autistic people, but that it has become about making would-be allies feel good, like they are doing something.
It doesn't succeed at educating as run and framed. It's not going to teach people what it is like to be autistic, and autistic people know it. Some have even commented on the event photo, explaining why. (We/they are the ones who are framing the issues with the event in terms of it not actually helping autistic people, not the ones saying things like that participation would get us fired. You can kind of tell who is who by looking at what issues we say there are.)
It doesn't actively provide help to autistic people either. I don't think anyone has come up with a direct material benefit to autistic people that this event could give, and I don't think anyone can. The only way it could help us was if it helped people understand what it was like to be autistic in ways that led them to accommodate us better, and that requires actual education. It's not going to happen as framed.
It does, however, succeed at making participants feel like they are doing something. You can recognize it by the way that they defend it- the people it is supposed to help show up and explain why it isn't going to work and what you can do instead, as Amy did:
You cannot understand in two hours or two days. And the fact that we don't speak is not the problem. The problem is that there is little understanding and willingness to listen to us. Everybody communicates. Spend two hours trying to understand a different way to communicate or listening to an AAC user.
When the answer to that  is something like this:
That's how you know that it's about feeling good about themselves, because they are claiming it is the right thing to do for people who are non-speaking and complaining about the inability to unite on it, when the people who are not being united, who are saying why it doesn't help and providing helpful comments on what would be good, are the exact same people that are supposed to be helped by it.  That's a form of silencing and it ties into privilege politics and of privileged groups making things about them when they aren't. It makes it extremely clear that the event isn't really about us, that our opinions aren't mattering here which is a common issue with things "about" disability.
One person did notice that both sides are talking from a me-I standpoint. That person missed a couple important things. One, Autistic people are taught from an early age to advocate about all their issues using I statements and to make it about their feelings because we are apparently impersonal, or something. So it's kind of their own teaching doing that on our end. Two, there is a group that this event is actually about. That group, which is autistic people, should be able to talk about it as me-I stuff, because it's about us. If it's not about us, that's part of the problem with it.
Now, for a comment that illustrates the problems we truly face, we autistic people who have communication issues. "... and would get me fired." Yes, that. Even when we can communicate with AAC and the job we want can be done just fine using AAC, the lack of speech thing can and does get us fired or keep us from being hired. That's the kind of thing that we need to be fixing. Discrimination against those of us who communicate differently.
It's a step up from Communication Shutdown, in that not speaking is a thing we deal with as opposed to staying off the sites we use to communicate in a move that doesn't even relate to how our disabilities work, but it's still not actually helping and it still has the ability to give people the idea that not speaking is the cause of the frustration and push people further away from accepting and including, making the problem yet worse. This kind of misguided attempt at helping and spreading awareness is why Autistics Speaking Day started and is needed. Listen to autistic people, that's how you learn about us and our lives.


  1. Hello, I've been following your blog for awhile because I find that you talk about a lot of really interesting things and bring up issues that I wasn't even aware of originally. So first I want to say thanks for sharing your thoughts out here on the interwebs.
    I haven't ever commented before, because well, I'm not really a commenting sort of person. Sorry to be a lurker. Anyways, I'm commenting this time because I just wanted to point out that one of the organizers of this event is a non-verbal autistic. Would that chance any of your arguments? I'm curious.

    1. It means that there is an event organizer who might be able to surprise me and come up with a way that this sort of event helps. It doesn't change the fact that the event, as framed, isn't going to have the effect that she seems to be going for. (I think she's going for an exercise in empathy? Voluntarily being silent for 2 hours isn't anything like being non-speaking.)

    2. It would have been nice if this person would say why he/she helped organize this.
      It was a bit pathetic that when I, a non-speaking Autistic, one of the people they say need their understanding (we do, but not like this) spoke up, I got yelled at, like speaking people yell at other speaking people when they want one side to shut up.
      Ironic. They want to "feel" the way I fell when I can't have my vice heard but when I disagree with them they want to shut me up.

    3. That one of the organizers/supporters is autistic doesn't invalidate the fact that a lot of autistic people find the event trivializing and not helpful. I'd be very curious for Carly to make a statement about her reasoning, but no, it doesn't really change how I feel about the execution of the event.

  2. It is frustrating how people want to simplify just to feel good about themselves; they are "doing" something, so yea! Don't they deserve a pat on the back.

    The problem isn't with speaking necessarily as with difficulty processing and communicating. Staying silent doesn't address that because you still can communicate; there is no frustration inherent in silence. How about maybe trying to communicate with someone who is using an AC device and spending the time to slowly communicate; to slow down, explain, read their response, actually communicate with someone who is autistic.

    How about trying to understand someone who is giving you instructions in a different language (where you have to figure out what is intended). The level of frustration in communication there might lead to more understanding.

    Staying silent, for heavens sake is nothing new. Take a bloody silent spiritual retreat. Silence doesn't equal frustration in communication; it doesn't equal difficulty. It is simply silence and not speaking. Did it for a week, and it was nothing more than restful. And maybe understand that autistics persons can be silent and it is okay; sometimes a child can be quiet and happy and there is nothing inherently wrong with that, either.

    Maybe they should try asking autistics who struggle with communication what it is like and what leads to frustration. Maybe they could make a real effort to actually learn. But that would be more difficult.

    It is ridiculous that choosing silence for a miniscule time is equated to understanding or even empathizing with the frustration in having difficulty communicating.

  3. Yeah, it's just...two hours of voluntarily not speaking can't even begin to let you know what it's like.

    I'm speaking, but I would tell someone to try to imagine that every minute, every day, of your entire childhood, you couldn't get anyone to understand or believe a single thing you said. Like you always, always had a sense that even though you were using the same words, you were speaking a different language than everyone else, and so about 80% of the actual content was going right over your head.

    I would *love* to be able to be silent for two hours. In fact, I take non-speaking days for myself whenever possible (which is not often) because speech is stressful and unnatural for me.

  4. That could be used as a teachable moment. If you would be fired from your job for not speaking for two hours, what does that imply about people whose ability to communicate using speech is inconsistent, or who simply cannot do it?

    It hadn't occurred to me that anyone could conceive of xyr feelings about using AAC xemself and xyr understanding of how nonspeaking people are treated as being unrelated. Surely people can understand that. Surely no one overlooked that.

    And I absolutely love that someone complained about the Autistic people talking about themselves and how they were affected by something created for people with autism. "Allow me to design this event and claim that it helps you. If you talk about how it affects you, however, you're being selfish." Of course! It's so very reasonable, and not at all like someone wants cookies for Helping The Disabled without actually helping the disabled.


I reserve the right to delete comments for personal attacks, derailing, dangerous comparisons, bigotry, and generally not wanting my blog to be a platform for certain things.