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.
Being polite is this really tricky thing for me.
On one hand, I know that I struggle with being polite, even when I mean to be. There’s lots of little things that even after ages of studying, I miss. And those little things end up having big consequences as to how I’m taken. I miss a signal to stop, I’m “over bearing;” I miss that I’m supposed to say something/contribute, and I’m “Unfriendly.”
As a kid, I would try (when brave enough) to mimic the “playful” teasing I observed between my peers, and miss that it had slipped over that vague line of playful. I was shocked and hurt to hear my mother mention my on occasion ”bullying” kids who were trying to be my friends. But the rest of the time, I was too “shy,” too “drawn into my own world.” It seemed as though there was no way to reach a happy medium in between, the one where other kids would presumably like me.
I’ve gotten, I think, a little closer to a manageable compromise. I’ve decided against listening constantly and desperately to the coaching and pleading, and generally try to be nice, opting to withdraw rather than risk it.
There are exceptions, of course. I tend to have a highly developed sense of right and wrong, and sometimes there’s just a little too much *wrong* in the world. Then I seem to slip up.
Let me give you an example. Recently, I was visiting my Aunt in NYC. She married a guy who has done pretty well in contracting, and so yes, there’s a good bit of a class difference. In any case, we were having conversation with my sister and step aunt, nd she started going on and on about how great “The Secret” was. She was recommending it to my sister. After a while, I couldn’t handle it any more.
I stated that actually, a lot of people who are facing various oppression (Like classism, racism, or ableism around Mental Health Issues) find the culture around subscribing to The Secret to be very hurtful. Too often, people whose issues face against more than the white middle class abled “mainstream” are said to have not worked hard enough at it for the “Laws of Attraction” to have worked. The Secret in too many circles is used to both deny privilege and to blame oppressed peoples for their continued struggles.
That’s not to say that there aren’t people for whom it works and is mega helpful. But to hear it go un-critiqued when recommended to my sister- who like me comes from a different economic class and who has her own disabilities- was not something I could handle. I Had to say something.
I later found out that she thought I hated her, in part from this and in part because of not interacting otherwise as she expected. Which isn’t true- I love my aunt very much, I just get frustrated by what I see as obvious class differences and how they effect how we see the world.
In any case, I end up feeling as though I’m too mean.
Online, it’s a little bit different. Somehow, I feel as though I’m a little too nice compared to some of my friends and fellow advocates. Maybe it’s who I spend time with. I often feel like there’s so much of my conditioning from childhood of trying to fit in, to dodge some of the less than wonderful experiences of “treatment” that makes me try to be nice all the time. To educate instead of protecting my boundaries.
Most of the people I know in Social Justice circles know that it’s not an oppressed person’s duty or reason for being to educate those who hold privilege over them. It isn’t, for example, an Autistic’s (or other person with disabilities’) job to live as a “self narrating zoo exhibit” as Jim Sinclair would say. It is the oppressor’s duty to get educated, not the oppressed’s to educate.
But I cannot bring myself to not educate. Trying to establish boundaries like some of my friends have is something that leaves me feeling torn. And I know that it is okay for me to educate people, but sometimes I worry it makes me seem too *nice* when compared to some of my friends. And I don’t mean nice in a kind person way. I mean nice in a too compliant way.
Nice in a way that would make people I love and respect look down on me as feeding into my own oppression. Or, perhaps, in a way that belies how deeply ableism has infiltrated my thinking. There’s a lot of things I keep stumbling across when I go to examine my thoughts that remind me how much of life as someone who- in my case- is an Autistic and has MH issues ends up being about compliance in order to survive.
How much of my desire to be kind is based on my beliefs, and how much is based on the feelings that I need to be “nice” in order to be worthy of surviving, of getting the supports I need?
I’m not going to stop being kind, or educating people. I will admit I can get s little sharp- for me- on my tumblr, but that’s tumblr and a lot of it is reblogging other, sharper people’s comments. But I’m not going to deny that drawing the line between being kind and being compliant is difficult.
But then again, undoing the things we have internalized is never easy.
Sorry if this isn’t at my usual standards. I just needed, for myself, to write this.
This has been republished at Shift Journal.
I have noticed something a little disturbing. Well, perhaps not terribly unusual- may actually be a standard in the world of publicists for all I know- but still disconcerting. What is this? The copying of another person’s article or release as framing for your own work.
I’m not talking necessarily plagiarism- oftentimes, the original writer is cited someplace, in a terribly unobtrusive way. Sometimes, the story was paid for from a news service. Certainly not Plagiarism. And in the general population, it would be nothing.
But what I’m talking about isn’t just in the general public, general sphere. It’s used by the people who are supposed to be our defenders- without checking that the article or release’s approach is appropriate. It’s one thing to link to an article that has appeared elsewhere. I’ve done it, even when the article in question irritated me. But to run it under your letterhead, or to purchase it for distribution, is something else entirely.
Let me use an example that came through my inbox today:
I got a forward that was originally distributed by the people Organizing the Reinventing Quality Conference in Baltimore, Md this week. I was a bit upset by the approach that the article in the email used, so I started to check them out. From their website, they looked interesting. Lots of talking up about bringing in community living, self advocates, etc. (I’d love to hear from anyone who is better familiar with them and their reputation among self advocates; email@example.com)
But talking up isn’t unusual even in organizations that aren’t so supportive. It is a tough lesson to learn- one that might make an advocate, particularly one that has ASD related issues, bitter. But many organizations assume token language usage, alongside the more obvious issue of token representation. Not being sure what to think, I plugged the Lede into google.
I discovered a couple of things. It turned out to have been originally written for the Raleigh News & Observer. As a general news source, the treatment in the article was typical, though frustrating. And it isn’t unheard of for companies the size of their owner, McClatchy, to sell distribution rights (McClatchy-Tribune). All perfectly normal in the industry.
What bothers me is how many groups- and the sort of groups- have reprinted the article as is. Some do so in a way that clearly shows- albeit at the end of the article- that it was retrieved from a distributor, like Behavioral Health Central. NAMI- for all the issues I have with them- doesn’t even host the full article, and instead links the reader to the News-Observer’s site to read the full article. All of these have various levels of appropriateness in distributing this article. As much as it personally pains me, NAMI’s approach was the most appropriate.
But back to the email I received. This is how it started (where a byline might be):
And here’s the bottom (where the full information is given on Behavioral Health Central):
Someone who is familiar with journalism or publicity might think to google the lede. But my guess is that the majority of readers won’t- maybe their background is in social work, or maybe they are parents. I know the org that forwarded this to me has a primary family base. To these “average” people, the language would appear to be authorized by the distributing organization.
My opinions on the article itself can be found in my last post. I disliked the perspective. But when a non-profit or other organization promotes an article- especially with such limited sourcing- counter to the interests of the population they claim to serve, there is an ethical problem.
Now, that was just one example- one that was specifically centered on a journalistic article that was distributed without proper sourcing.
But the problem is vaster than that. I have seen publicists copy over releases from government agencies to give context to the information their client is trying to get out. While giving context is an important step, that context needs to be in the language and perspective consistent with the organization you are representing. It is both lazy and unethical to refrain from copy editing the entirety of what you put out there to be consistent. And if a publicist were to submit something this way to a professor in college, they would most likely receive a reprimand.
I have a proposition. Why don’t we all take a moment to find some standards as to what we do and don’t put out there. Here are my suggestions:
1) When distributing an article, source clearly. Don’t cut out the original distributor. Use bylines in their customary place. I would even prefer that the sourcing be put in the by line. EX: “Michael Biesecker for the Raleigh News Observer.” But even putting the sourcing clearly at the end (EX: “Originally published in the Raleigh News Observer”) is at least consistent with Journalistic standards.
2) Use language consistent with the organizations/people we represent. While there does need to be a recognition of the language and views of the public, that doesn’t make it okay to use language inconsistent- or even opposed- to the organization or people. Instead, use it as a chance to promote their language and views, even if only subtly.
3) If creating context, don’t simply copy and paste someone else’s release for it. First of all, it’s lazy and bad work. Secondly, it limits your ability to promote who or what you you are supposed to. And occasionally, it might promote things that are *unwanted* instead.