Thankfulness, Intent, and Impact

Places all over the internet, people are posting about things that they are thankful for this week. Today I’m posting about something that people expect to be thanked for, but which honestly I shouldn’t have to be thankful for. That’s right, I’m talking about your good intentions.

I was recently at a conference when I was confronted with an intent vs impact situation. I won’t go into the details- I was satisfied beyond belief by how the conference manager tried to remedy the situation- but in the aftermath, I realized it was time to write this post.

You see, when the conference manager tried to address the situation, the individual- who had said that I “wasn’t Autistic” and in response to my reaffirming my diagnosis “but you seem so nice”- responded that it was all “meant as a compliment.” This is not an isolated issue, as any number of advocates can tell you. Being a person with a disability can sometimes mean you get the “compliment” of being told that you “don’t seem that disabled” or that you are “so inspiring.” It also can mean that when you get upset about this, people pull out their intent.

But here’s the thing: intent isn’t magic. The fact that you were intending to pay me a compliment doesn’t obligate me to be thankful when you say something that reinforces stereotypes about people like me, or when you say something that can make it harder for me to get supports. The same system that tells you that saying someone isn’t disabled is a compliment is also at the same time telling people it is okay to say dehumanizing things about PWD, because we are other or aren’t “nice” or are all the things that you are not associating with us.

Neither does your good intentions  insulate us when we are in a position where we aren’t looking so “not disabled.” The gentleman’s insistence that I wasn’t like the kids his wife teaches didn’t stop me from having a shrieking sobbing meltdown in my county assistance office this week over something I couldn’t recall. In fact, his remarks fueled the same culture that I catch myself falling into by accident by thinking, “good thing I was the only one in that waiting area.” His intent doesn’t stop me from the horror that is finding myself thankful for the assistance office secretary not calling the cops or the ambulance on me, which is a real and present fear every time I get overwhelmed or frustrated with myself in public.

I should never have to feel thankful for people treating me like a human being. Not even when I am at my most incomprehensible impossible to communicate during states. Not even when I’m at my most obviously disabled points. I should never have to thank a stranger for allowing me to exist.

Your intentions don’t mean that you aren’t holding up a system that asks me to give thanks for these things. Intentions don’t mean your impact is mitigated, doesn’t relieve you from being implicated in a system that one day will say I’m not needy and the next that I’m too needy to be seen as fully human.

Don’t worry, I (and every person with disabilities who has been around long enough) know that you call us human, we’ve had you and so many others tell us all about your intent. But your intent and your actions just don’t line up, not really. I want to believe it when you respond to my concerns that you don’t think x bad thing about Autistics or about PWD or… But your actions tell me differently.

Your impact reminds me that all of this, all the things in our culture we are socialized with say that your intent makes you a good person. That your intent makes you more accepting and worthy of thanks than the general public. That of course your actions won’t perpetuate the group think that says those horrible things you say you’ll never say.

It also reminds me that you’ll still say them by accident, because those horrible things are a basic intrinsic thing in our culture that we have to watch for. That your privilege means that you won’t remember that the things you say about how unusual it is for me to be nice and Autistic are hurtful. That you don’t have to worry about how able is “normal” and disabled is “bad”. It means you’ll laugh at the joke in the men’s room about hand flappers, and that you won’t blink when you watch a movie where the murderer rocks to himself. (I watch those movies too, I’m a fan of horror and what not, but my goodness do. I. Blink.)

So no, I’m not thankful for your good intent. And it’s not that I’m not capable of being thankful.

I’ll save my gratitude for actions and impacts that help not harm. I’ll give thanks for the thousand tiny actions that are good, intentions or none.  Indeed, I am thankful every day for such little things, and some days for huge things.

I’ll find myself thankful when my mother opts to have a conversation with me via instant message even though we are in the same room. I’m thankful when someone helps me with a form or reminds me where I’m headed, regardless of if they know why I’m needing help. In the same assistance office where I melted down, I was thankful that my intensive case manager being on the ball meant my meltdown didn’t relapse over and over the rest of the day.

I’m thankful for having found community with my fellow Autistics and other PWDs. I’ll be thankful when we manage to balance a bunch of different food restrictions that sometimes contradict- after all, that is an accomplishment with or without intention or culture!

I’m still not going to be thankful for your good intentions. I’ll save that emotion for the good impacts.

_________

A quick note: I’m only posting this today because of all the “I’m thankful for” posts. If you are looking for something about Thanksgiving, I’d encourage you to do what Occupy Boston is doing in centering indigenous voices. “No to Thanksgiving” is an excellent history piece you ought to read. There’s a list of Indigenous tumblr-ers for you to follow, Blogs like Native Appropriations to read, Or check out the tags on other multi-topic blogs. Sciological images has a Race/ethnicity: American Indian/Aboriginals tag, for example.

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Rocking (and Flapping) at a 1000 Revolutions a Minute

[Content warning: Mentions of Ableism; Censored use of the r-word; Abusive Treatment]

I made it down to an occupy 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 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.

A bit of this and that

My posts here tend towards single issue posts. I rarely post small things, or things I haven’t thought through or so on. (I use tumblr for that…) As a result, I post fairly infrequently- I post on big ideas that take a long time to find words for.  But I feel like I ought to post something, so I am putting this post together out of pieces. Maybe it will lose me some of the things that people think of me but… well, I need to think something of all this as well, don’t I?

So, you are getting a post abut my latest DC trip.

I came down via plane on Sunday. I had NARP meetings all day Monday and half the day on Tuesday. I went down to the Occupy/decolonize DC  site Tuesday afternoon, which I’m writing another post on.

Wednesday night was the ASAN 5 year anniversary dinner. I do have an album for pictures people took of me at the dinner on Facebook, but I didn’t have a camera myself. I believe that Melody Latimer is looking for photos from this event for the ASAN anniversary edition newsletter? (If you have any, send them to mlatimer@autisticadvocacy.org- or you can link/tag them?)

Since I arrived early, Claudia had me help with some set up stuff.

I personally was a little exhausted by all the social-making there, though Ari Ne’eman’s and Sharon Lewis’s speeches were fabulous. I was feeling a bit overwhelmed and had stepped out of the room for Alexa Posny’s speech, though. The desserts included creme puffs shaped like swans and chocolate covered mousse shaped like mice. Corina did take pictures of our desserts, but Corina hasn’t uploaded her pictures yet.

I also got to talk to Lindsey Nebeker, Lori Berkowitz and her partner Karen Hillman, Corina Becker, Lydia Brown, Lauren Gilbert, Melody Latimer, Kathryn Bjørnstad and her fiance Sean, and lots of other people. Food-wise, I rather liked these spinach things? I also discovered that Scotch and ginger ale is better than just Whiskey and Gingerale. Who knew?

Nancy Thayler was given the Outstanding Ally award, and Corina and  Kathryn were awarded the Exceptional Services to the Autistic Community Award.

For anyone who was unaware, it was at the National Press Club in DC.  It was probably the ritziest place I’ve ever been, and I’ve been to a dinner at the Ritz in NYC before.

Thursday night, 8 Autistics and one Allistic (Kathryn’s Fiance) descended upon Lindsey and Dave’s house for a total of 10 Autistics for dinner. Emily Titon cooked a Mango Curry Chicken dish. It was interesting to have so many of us all in that house being community.

Scott and I on our computers, while Melody, Kathryn, and Lydia... Do other things while being all Autistic community-y.

At the beginning of the night, we had a bit of a show and tell about stim toys and stuff. Lindsey also graciously let us on her and Dave’s wifi. We spent time in a couple of different rooms on the ground floor. The food took a long time to make, but it was delicious.

Between the Stim toy show and tell and later, I curled up like I do sometimes next to Lindsey's Piano. Lydia then took this photo.

The Next morning, I went to the Alliance for Full Participation conference with Emily and Scott. (Ari came later and helped facilitate a session.) The topic was inclusive employment, and it was rather interesting. I also got a chance to see my friend Bill Krebs while I was there, and introduced him to some ASAN people.

Speaking of “ritzy” places, it was held at the Gaylord National Harbor Hotel and Convention Center. Apparently it is the biggest Hotel and conference center on the eastern sea board?  I don’t know but there’s basically a whole village in the atrium. They do have nice couches? Though I sat on the floor  for the “Town Hall”. . .

Sitting on the floor at the AFP Town Hall.

The Town Hall was HUGE- most of the seats were filled and I didn’t want to have to attempt navigating to find a seat since there were already people standing. The crowd was a mix of self advocates, employers/business people, and providers. It was… interesting.

I also had a few side conversations with both Scott Robertson and Betsy Valnes (at different times) via my netbook and word pad. In fact on my facebook the above photo is labled, “At the AFP Conference Using word pad to communicate in a load crowded room.” (Emily, who took the photo, labeled it “Savannah, looking lovely as always.” I think I look like I have liver failure and no sleep.)

Later on, in a break out session, I sat in a group that focused on starting your own business. It was interesting I Think. While in that group, because it was an anxiety producing situation, I used my netbook and word pad for communication.

I am not at the conference today- I need the day to decompress before I take the train home tomorrow afternoon. (And yes, I do love taking the train- it is less expensive than the plane, too!)

I hope this not-so-issue centered post was okay to read. I find that I don’t particularly find this post all that great, but I did want to get the little slice of Autistics having/building community out there, and wanted to share a DC trip with everyone.

Decolonizing Our Voices

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.

____________

When I wrote this, I was working along side Native and Black activists who preferred the Decolonize language over the occupy language for things to do with the various wings of the “Occupy” movement. I’ve been informed more recently that there are problems with using that, particularly since that context has passed, and won’t be using decolonize in this way in the future – Nov 1, 2013