Monday, November 1, 2010

Stop, Look and Listen --- It's Autistics Speaking Day

First, a little background information:

Today, there's something going on called Communication Shutdown, in which people are encouraged to abstain from Facebook and Twitter all day to 1) raise awareness of autism --- while users are offline today, their pages will display an icon that explains why they're offline; 2) simulate what it's like being autistic, i.e. being cut off from the wide world of social communication; and 3) raise money for various autism charities around the globe via participant donations.

(For a brief, but really enlightening, discussion of why autism charities are problematic, see this post on Cripchick's blog).

Lots of autistic bloggers, Facebook and/or Twitter users are annoyed with this autism-awareness campaign, partly because abstaining from social media isn't very enlightening as far as what it's like to be autistic.

Social media and the Internet actually represent ways autistic people connect with others, to a greater extent than we can in our non-digital lives. The Internet has allowed us to meet other autistic people around the world, talk about issues that are important to us, commiserate and empathize with each other over things that non-autistic people --- however kind or well-intentioned --- just don't understand. Social media can enable us to maintain friendships across distances that we might not be able to cross in the physical world, since autistic people are often unable to travel as freely as non-autistic people to whom driving a car, riding a bus cross-country or flying on an airplane and navigating a busy airport do not constitute serious challenges.

So, for some autistic people, a better awareness campaign would be something like Corina Becker's idea: Autistics Speaking Day, in which autistic people take to their blogs, Facebook pages and Twitter accounts to write about what it's like to be autistic.

Let us use this day to flood every social networking site we know with our accounts, our experiences, what it feels like to be Autistic.

Every sensory pain, every communication frustration, every account of being bullied, every wondrous moment, every peaceful calm, every instant of understanding and joy.

Let them hear our voices and take back the Autism community.

Let us speak.

Let us tell you what it's like to be us.

And that, would be true Autism Awareness.

* * *

For Me to Speak, You Have to Listen.

Sometimes, people with disabilities need more space than people without disabilities do. This applies not just to physical spaces --- aisles, car and bus interiors, seating, sidewalks, doorways, hallways, etc. --- that need to be broad enough to accommodate wheelchairs, walkers, scooters, service animals, or other mobility and assistive devices, but also to interpersonal spaces.

A conversation can be accessible or inaccessible, just like a building can be. Just like there are places where only people who can do certain (physical) things --- climb stairs, squeeze through narrow openings, open heavy doors, etc. --- can go, so are there social and political environments where only people who can do certain (verbal, mental, emotional) things can participate.

You have to be able to speak, loudly and rapidly. Most of the time, you'll need to be able to control your need for pauses, for breathing or thinking space, so that you can get a complete thought out in one piece. You have to be able to intellectualize --- not to get so upset that you become incoherent, which can be hard if the issues being discussed have a direct bearing on your life. You also can't be too intellectual, or you'll lose your audience. You can't talk for too long. You can't be too abrupt. You have to be able to see where the conversation is going, as if it were a living thing that could walk, float, flutter, slither or ooze its way around a room, and adapt whatever it is you want to say to fit what your audience expects to hear.

It's the speed of group conversation that's hardest for me to deal with, for a lot of reasons. One reason is that, since I don't hear tones of voice or anything "meta" to the actual words being spoken (I can infer sarcasm from context --- say, if I know the person and they are saying something diametrically opposed to what I know they believe --- but my first instinct is always to take things literally), I cannot tell the difference between a silence that signifies that someone has finished speaking, and a pause in the middle of a block of speech. I distinguish them by waiting to see if the person resumes speaking; if they never do, I decide that the way is clear for me to respond.

Of course, in all the time it takes me to do this, someone else has already perceived the opening and begun to speak.

The other big problem I have with speaking, and responding to other people's speech, is that I don't think in words. It can take me a very long time to convert what's going on in my head --- which is sometimes a single still image, sometimes a slideshow of images, sometimes just a jumble of colors and shapes, moving and changing, and sometimes looks like nothing at all, even to me on the inside --- into coherent, grammatically-correct, meaningful language. It is somewhat easier to effect this transformation in writing, where what I have already written stays there for me to read, to orient myself and build on, while in speech all the progress I've made evaporates into the air, leaving me nothing to work with. Most importantly, though, in writing I have the luxury of waiting as long as it takes for my thoughts to solidify into nameable concepts.

Time is not on my side when I'm trying to participate in a group discussion. I can't wait for my thoughts to reveal themselves to me in communicable form, but neither can I describe what I see as it appears to me; most of the things I see elude description, or, if they can be described, defy interpretation. The thing I can do earliest is perceive an absence; sense something that is not being addressed. I can't always see what's missing, but I can usually tell that something is.

When that happens, I've learned to tell people to wait.

* * *

Other Autistics who are Speaking today:

Bev at Square 8 says, "Squawk?"

Corina Becker has posted a roundup of her own past writings about autism

The Untoward Lady writes about being autistic and in love

Amanda Forest Vivian has two posts, one about how 1) passing as non-disabled can be a mixed blessing and 2) therapies that are primarily geared toward turning non-passing people into passing people are misguided; and one about "Regular Person Listening Day"

Kat Bjornstad has a link roundup, and a discussion of her experiences starting a blog and running an Autistics Speaking Day Facebook event

Rachel Cohen-Rottenberg at Journeys with Autism speaks her mind, and also speaks from her heart

Clarissa wants to know, "How Does Silence Support Autism?"

Astrid van Woerkom sometimes loses the ability to speak

Savannah Logsdon-Breakstone has reposted several of her poems --- "Articulate", "Analogy > Simile > Metaphor and Me", "Feet", "Poetry and the Vision of Thought", "To Inspiration", and "Allied, Unallied, Re-Allied" --- and an "accessible interpretation" of her poem "To Inspiration"

Leah Jane at The Quixotic Autistic talks about a project she's been working on with her local autism club

Clay Adams reposts an essay by Ari Ne'eman

(That's not all, not by a longshot. Kat's link roundup has more, and Sunday Stilwell at Adventures in Extreme Parenthood and Kim Wombles and Kathleen Leopold at the Autism Blogs Directory all have link roundups of their own)


Unknown said...

Thank you for posting this. The idea of " Communication Shutdown " sickens me, not just for the reasons you said, but because even if it were accurate, it's just an example of privileged fucks slumming to appear compassionate. A temporary sacrifice so they can claim ownership over the voice of the permanently handicapped. I'm sorry I missed Autistics Speaking Day, because I wanted to start shit up.

Leah Jane said...

Thanks for the link love!
I'm pleased by the outpour of blogging that occurred today. It was a powerful feeling, seeing wave after wave of Bjornstad's links flood my inbox. It really made me proud to be a part of this community of dedicated, openly autistic individuals.
It was a perfect way of countering what I believe was a rather ill-conceived and deeply disablist idea. I love the beauty of using our most beloved and powerful tool for communication to bring it down.

Jennifer said...

Very nice post.

In the spirit of "For Me to Speak, You Have to Listen," I'd like to encourage you to take part in the Gateway Project ( that conducts autism research in equal partnership with autistics.

Clay said...

It's gonna take me forever to go through all those links, but I'm going to try, because I'm sure they all have worthwhile things to say.

Clay said...

Wow, after seeing some of the spam I've seen on other's blogs, I'm really glad I chose to moderate comments before they're published.

They can really "get ya" by burying spam in older posts, but I don't understand where's the profit in that, because people aren't as likely to ever see them. I dunno...

Lindsay said...

Yeah, I have comment moderation on all posts more than 14 days old.

And Blogger has recently started its own automatic spam-filtering thing, which it does on all posts. Works pretty well, too.

It started getting way too hard to hunt through all my old posts looking for spam comments to delete manually, so I compromised my dedication to Free Speech and instated comment moderation. :(

(I publish any and all comments I think are from a real person; I just have noticed that sometimes it's more intimidating to comment on blogs that have moderated comments, so I had hoped not to have to do that).

Matt said...

A great post, thank you! In my Nov. 1 post I wrote, "I wish you could understand how it feels to be me." You've explained it very well, where conversation is concerned.