Decolonizing Our Voices

November 1, 2011 at 7:58 pm (ableism, Austism, Autism, Autspeaks doesn't speak for me, Developmental Disability, Economics, Ethics, grants, Occupy Wall Street, Oppression, protests) (, , , , , , )

Today is Autistics Speaking Day, a day when we are particularly asking our allies and allies-to-be to step back to allow the voices of Autistics ourselves to be heard and listened to.

When ASD started last year (2010) we were in essence protesting an “awareness” campaign that people who purported to be our allies had designed and promoted with heavy pity language. They had asked people not to post at all, to be silent and non-speaking online to draw attention to the communicative issues many Autistics face. I believe our response was pretty understandable not only was this basically online “crip drag,” but it also denied the fact that for many Autistics, online resources such as social media sites have given us a voice.

I myself had great strides in my personal development after getting online. I know a number of people who are Non-speaking Autistics whose ability to communicate was greatly augmented by online resources, and a number whose involvement in virtual advocacy have made the people around them rethink everything about their care. In short, Social Media and other virtual resources have done for us what having a ramp in a public building does for our chair using brethren. (I will freely admit that it doesn’t solve all our problems, and we still face hostility online and off that prevents access just as having a ramp alone doesn’t make your building wheelchair accessible.)

This year, Autistics Speaking Day is taking place at a time when we have people in the streets protesting economic disparity and corruption. For some of the protesters, there are harsh economic realities in their own lives motivating them-  Homelessness, lack of accessible health care, and unemployment. Others feel that their voices as citizens have been infringed upon by corporate interests, particularly when it comes to our elections in the United States. Still others are driven by a need to undo injustice.

This movement of protests is popularly called “Occupy Wall Street,” so named for the action of camping- or “occupying”- public places such as Zuccotti Park in NYC or Mellon Green in Pittsburgh, or a wide number of other Occupying sites. However, a number of indigenous groups quickly pointed out that Wall Street has been occupied for centuries- it was originally Lenape tribal land.

So when their site started, Boston issued a solidarity statement with Indigenous Peoples, and were followed by a number of other sites. In light of this, some people have been using the term “Decolonize” rather than “Occupy” so that the voices of marginalized Americans- such as our indigenous populations- can be better respected and more easily centered.

People of Color are especially hard hit by the economic environment, and in a number of places the living conditions on reservations are deplorable. People with Disabilities too are feeling the economic burden our services are being cut, our programs redefined to limit our involvement in our communities, and supports being withdrawn under the excuse of “budget issues.”

After some thought, I’ve decided that there’s too much of a cross over for me in the work of Decolonizing Wall Street and of our voices as Autistics to not write this post today. While people in general are seeing their demands of their political representatives co-opted or diverted by corporations, Autistics routinely have our voices co-opted by our allies and diverted by large “non”-profits such as Autism Speaks. Many of us are frustrated by the lack of Genuine Voice that the general public hears from us. Instead of looking at the things that help us live our lives and improve the quality of it, research funding is sent to projects that could potentially prevent us from being born in the first place.

Indeed, when we speak we are dismissed using logical fallacies so that the voices of those who proclaim themselves working for our “own good” can be prioritized. Obviously, not all of our allies are like this. But some are, be they parents, professionals with pet theories, or Organizations whose bottom line would be affected by what we are saying. Those are the ones we are talking about when we talk about how our supposed allies need to step back and stop centering themselves.

The Protesters in the Occupy/Decolonize use  consensus building as a process. This does have flaws by itself- those with pre-existing privilege can still flaunt it- but there are some principles that can and at some sites are added to mitigate those flaws. One of them is the concept of “Step back, Step up.” This means for people who have privilege- white people, straight people, cis people, men, and so on- to take a step back in the conversation, and to encourage those without your privileges to step forward so that they can be heard- something that won’t happen on its own. Without taking this into consideration, the same hierarchies that divide us out in the world will be reproduced in our movements.

This saying is the reason I’m bringing up the consensus process in this post- because the conversations we are having in the Autism and Autistic communities need to utilize the same principles. Otherwise no matter how good natured and well meaning people are, those who have less privilege will not be heard. And to me, this Principle is at the core of what Autistics Speaking Day is about.  It is about us being heard when we try to step up, and about our allies supporting us doing that.

I’ve been involved from afar with the Occupy/Decolonize activities at Pittsburgh, PA’s site, working especially with the Marginalized Communities and Allies workgroup.  The Safety workgroup took most of my comments about safety concerns for PWD and added them to the safety document. I’ve been encouraged to stay involved in the processes and networks being formed.

Most encouraging to me is that our site’s working groups have been prioritizing ways for people who can’t stay on site to be involved. Instead of the sentiments that if you aren’t at an action you aren’t really committed that have characterized some other movements I’ve tried to be involved with, I have gotten reassurance. Paul O’Hanlon, a protester with disabilities who has been very active both on site and off, told me to remember that they know that every person there is representing people who can’t.

That isn’t to say that there aren’t people who assign high value to people on site. There are still people who fail to recognize that even when we are eliminating our class barriers that our other oppressions and privileges are still intact. There are still people who don’t get the anti-ableism, anti-racism, and so on work is still very much needed. But I’ve seen what feels like great strides. Objectively, perhaps they aren’t that huge, but for someone who has had their voice sublimated repeatedly it feels huge.

Just as as a young teen blogging, instant messages, and other internet resources helped me to gain a sense of community and skills, the internet is enabling me to be involved.  I’m someone who has not been able to physically be on site because of a number of reasons. I’m rural, I have to have access to certain services on a regular basis that would not be present on site, and I also have fibro Myalgia, which would make winter camping a mobility and possible safety hazard.

So I’ve been doing support work, editing virtual documents, and organizing accessibility work. I started a cross disability group called “Occupy Disability/Decolonize Disability” for people with Disabilities to network resources on both being on site and working off site. A friend with Multiple Chemical Sensitivities started #Occupy at Home to help people like us find ways to be involved. There’s even an “Occupy Autism Speaks” page to highlight the issues with that organization.

All of these things keep seeming to parallel to me the ways that Autistics have built community online when our physical environments have been barred to us. We’ve worked to create venues to be us in, to see the value of our forms of communication. To be involved as we are, not as others think we “ought” to be.

Today is the day we take back our voices. Now is a time when “The Whole World Is Watching” what is happening. Tomorrow is when we will continue to speak out- so please, keep on listening.

Permalink 9 Comments

York, PA ASA’s Billboard Blunder

August 16, 2009 at 3:32 am (advertising, ASA, Austism, PA)

Some of you might remember the Ransom Note Campaign that NYU Child Study Center ran briefly in December of 2007. Briefly because the disability community, 22 Organizations including ASAN, objected to conditions ranging from Autism to ADHD to Depression being depicted as kidnapping or possessing children. They were swiftly removed.

And it got a good amount of publicity, both within the disability community and in the MSM. A victory won, and after such coverage It should be obvious that this sort of analogy is inappropriate at best, damaging at worse.

I’d like you to meet York county, PA’s ASA chapter. Or rather, thanks to Club 166′s post,(and subsequent letter), their most recent billboard:

want a clearer image? well, it’s up on their website, too, with the oh-so-descriptive note of “Several new billboards can be seen around York….”:

Hm. Okay, so it’s a parent quote, but why would this seem like a good idea in light of recent events? Even if this is something the parent said out of desperation at a support group meeting, why would it be okay to plaster on a billboard where everyone could see- including the children whose lives it is speaking so derisively about? (I’m leaving alone the larger question of why any parent dealing with ANY child with a disability feels so alienated as to feel this desperate for now.)

Right now, I’m working with ASAN to gather more information and organize a PA reaction to this. We are hoping to get them to take these billboards down- and hopefully to understand why they weren’t appropriate in the first place.

Right now, we are in the first part of this process- ASAN has sent a letter to ASA about their York chapter and we’re working on one to ASA-York to be sent in the next few hours.

If you, as an individual or as part of an organization, would like to contact ASA York to let them know how you feel about the bill board, here’s their contact info:

e-mail: pa-york@autismsocietyofamerica.org
e-mail 2: info@autismyork.org
Phone Number: 717-801-1272

Please remember to be polite when contacting them. If you choose to call, make sure it’s in normal business hours EST (New York Time) and be polite- no foul language, etc. Just a straight forward statement of complaint, short and sweet.

I’ll keep you updated if I discover any more information, and on any further actions we attempt.

EDIT: Since posting this entry, the announcement on the launch of the billboards has been purged from the ASA-York site. If I obtain further info, I will post it tomorrow in a new entry.

Permalink 3 Comments

Follow

Get every new post delivered to your Inbox.

Join 575 other followers