I know I shouldn’t be doing an “update” post, but I’ve had to delay a lot of the posts I’ve been planning. In the mean time links and things, as well as some plans on what to look for, are ready and I’m pretty excited about them! First I’ll talk about some of the plans I have for the next few weeks, then the things I’ve done recently around the net, and finally some of the things I’m excited about that aren’t mine. Ready? Fantastic! Allons-y and Geronimo!
Look for a post about the Allied Media Conference, as well as on how access to various types of media has helped improve my life here on monday or so. I’m co-coordinating the Disability practice space- creating collective access- this year, and I’m really excited about it. (If you want to blog/write/make videos/make art about how media has improved your access, let me know!)
I’m also working on a post about the issue of ableism and classism combining in the practice of telling low income families to call the police when their kid has a meltdown instead of services. I’ll talk about an IEP meeting I had, and I’l talk about how the added factor of racism resulted in the unnecessary death of Stephon Watts.
Elsewhere on the web. . .
If you haven’t yet, please go check out the Disability Right Now blog. I’m a staff writer as well as the PR head. We are wrapping up a blog event about George Hodgins, Euthanasia, and Eugenics this week. Next week, I have a post on Disability History 101: the origin of institutions going up for my post for round 1. Also, I worked with the EiC to do an interview about it for ASAN which will be in their April newsletter! Whoo!
Not Quite Web Stuff:
This week I’ll be going to Chicago to co-facilitate for the Illinois state team at an Allies in Self Advocacy Summit. It’s exciting, of course, though at this point I will basically be at the hotel and the airport.
I’m going to be going to a couple of Rallies in Harrisburg, PA this spring. The first one is on Women’s Rights, and Amy Caraballo is one of the organizers. It’s April 28th, and it’s complicated- but I think it will be important to be a PwD at this event.
The Other is May 2nd about the cuts to services for PwD that our current administration here in PA have been pushing. The PA Waiting List Campaign is heavily involved, as is Vision for Equality. I hope to see lots of people there! I’m going under the auspices of SAU1, but I’d love to see some ASAN representation or even NYLN representation!
It’s pretty scary stuff. So far: Disability Rights Network of PA and a whole slew of disability orgs here in PA have filed a suit against the Corbett Administration; Issues with Access to areas of the Capitol for PwD; and some fairly rude treatment of Protesters. (Rendell’s administration regularly sent someone to meet with Protesters with disabilities. Corbett’s ignores us or tries to create barriers to our exercising free speech.)
I personally feel sick over our current governor here in PA’s tenure. But then, I didn’t vote for him. I voted for the other guy. If you are in PA (or anywhere in the USA actually) please register to vote and read up on the issues. Help other people who might have barriers to getting in to vote- especially PwD- get registered and in to the voting booth or registered early enough for absentee ballot or alternative ballot. Last year I almost couldn’t vote because my absentee ballot came late- thankfully the plans that would have taken me out of town were cancelled.
Too often, PwD don’t vote because of a lack of support or people ignoring that we might want to. In the current political climate, it’s especially important that our voices are heard and votes count. You can find out more about getting out the disabled vote from the Disability Voting Coalition of PA.
Other People’s stuff:
Babble.com is doing a Top 30 Autism Blog ranking, and the voting is now! A number of my friends are on the list and are blogs I’d recommend reading. (Along side some I’d have you avoid, but that’s your business.) Good Luck to Lydia, Julia, E, Stimey, “Autismum“, and Thinking Person’s Guide to Autism!
[Content warning: Mentions of Ableism; Censored use of the r-word; Abusive Treatment]
I made it down to an occupy/decolonize site!
I am in the DC area this week for a variety of things. So Tuesday afternoon I went down to the site at McPherson Square for a couple of hours. It was significant for me in part because although I’ve been really active with work groups at Occupy Pittsburgh, and been doing a lot of Occupy/Decolonize disability work, I’ve yet to make it down to any physical site. (Mainly it is an intersection of disablity and transport issues.) So it was exciting.
I stayed for a while, but I ended up leaving 10-15 minutes earlier than I had intended. Turns out the people in the tent behind the sidewalk where I had plopped down were Ron Paul supporters, and they got their supplies out and what not. I decided I’d rather not have my disabled self be used to create support for someone whose policy platforms tend to be counter to the needs of people with disabilities.
I made a youtube video of a portion of my time on site. (And yes, it is captioned, thanks to Universal Subtitles.)
The reason this is getting its’ own post and not getting lumped in comes from a comment on this I got from Urocyon on Google plus. She commented about how even thought stimming makes her feel like she’s releasing tension from trying not to, it is uncomfortable for her as an adult to stim in public.
I responded with-
I think that those feelings is what makes rocking or flapping in public so… well, revolutionary and powerful. Because we’ve had those thoughts that it’s bad or wrong or something to hide ground into us to the point where we doubt ourselves and our right to exist as we are in public spaces…
Rocking and flapping and spinning and humming and pacing and racing and- well, and stimming some how becomes a challenge to those things we’ve internalized about our rights to live as we are. It is somehow this reclaiming of some part of us that we love but that we were told is wrong.
We have been told that these basic steps of self care- and that often is what it ends up being in a way- are wrong. Quiet Hands and You look like /are acting like a R[-word] and people will think you are crazy and countless other stories, these are the things we were told from a young age about how we are bad and wrong. We are trained fiercely to assimilate into a world that doesn’t want us, but other people in the warm bodies we inhabit and strangers they can love to move in behind our faces.
The week before I sat in the park and rocked, feeling my defiance, I spent several nights wishing I didn’t exist. I knew all the things I talk about here intellectually, but that base part of me is still filled with the remembered abuse of my past. The most prevalent are those that were excused at the time as treatment while speaking words describing me as a burden and my being as a barrier.
So, in the face of stress, the only answer that came to me is that I should not exist. I sat rocking and blubbering the late nights away while my sister was sleeping fighting those things from my past that still live in my head. This time I won, but today I saw a friend who was saying of herself the same things- I should not exist. This is a friend who is passionate about her rights as a person with disabilities (among other things), and still the thought- I should not exist.
When the things that make up a part of who we are is so suppressed, how can it not be revolutionary to rock in public? How could I not include this part of myself when protesting a system that treats people without economic means as worthless? Why shouldn’t I stim in the face of a world- one both outside and inside- that tells me that I, too, am worthless? (If you are new, I am indeed fond of rhetorical questions.)
I am stimming 1000 revolutions a minute when I go out and stim at a protest. I’m being Autistic, fat, disabled, queer, poor, covering, and many other things in public when I am in public, and being visible here is bringing all of those things out and into a space where revolution can happen. I am speeding our revolutions while joining their revolutions, even if it is only that tiny amount that visibility brings.
But revolution can happen in places that aren’t big protest sites too. Protest can happen even when you are alone, the only person to see it yourself and the only mind it will change is that part of you that believes what we’ve been taught. That is revolution at the most basic element- being able to change our own minds to make a more equitable world.
So yes, I rock (and flap, and…) 1000 revolutions a minute. We all do, when we dare to be who we are without apology, and dare to confront that which tells us we shouldn’t exist or aren’t worthy. We do when we dare to exist freely as people with disabilities, as Autistics, as all of the things we are.
We are a 1000 revolutions a minute.
Republished at Persephone Magazine November 28th 2011.
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.