This post will not be pleasant, it will be challenging for some, infuriating for others, and will be my warcry for eternity. It has been a post that has been percolating in my mind since last January when I started actually writing my thesis.
When I first started research for my thesis in my first semester. I looked at the shit Autism Speaks has done and thought to myself, “What the hell? They are the self-proclaimed ‘world’s leading autism science and advocacy organization,’ why are they trying to eradicate and exterminate autistic people?”
I wrote a post regarding the question, “Can Autism Speaks change to be what autistic people need” with no, they cannot because they are still looking at autism from a disturbing and disgusting viewpoint: autism as death, autism as kidnapping, autism as abuse.
An organization that is founded on these principles can never change because they will look at autism in that same way. In addition, they will surround themselves with people who view it in the same way. Autism Speaks can look like they have changed by adding two autistic board members, but they never actually will.
I find it interesting that, in the announcement (TW: Link to Autism Speaks) that Stephen Shore and Valerie Paradiz, both autistic, were added to Autism Speaks board, Autism Speaks never mentions anywhere that they were actually autistic. Has Autism Speaks really changed when they add two autistic people onto their board of directors and completely erase the autistic part of their identities?
I spent a large part of my thesis attacking the assclown known as Autism Speaks. Now, I’m going to address the thing that is really on my mind in this post.
Autistic Self Advocacy Network (ASAN)
I’m going after the big one. I’m like Captain Ahab going after Moby Dick (Hopefully, it ends better for me, but either way, I need to say it). Ever since the beginning of Fall semester, I have had a suspicion of the ASAN. I had heard stories here and there about how ASAN wasn’t the opposite of Autism Speaks. Stories about how individual ASAN chapters would do these amazing things and ASAN national would come in and claim that they did everything. But when I tried to verify these things, I found nothing publicly.
Originally, my thesis was going to look at my identity and as I got to know myself better, I saw how I didn’t actually fit into ASAN. But, no matter how hard I looked, I couldn’t find anything negative from within the autistic community. There were only things from Autism Speaks supporters who .
The only thing that I can point out is that ASAN’s mission is to partially to “improve public perceptions of autism.” And too often, they do this by silencing or ignoring the voices of autistic people who are justifiably angry with a world that fucks us over every chance it gets. By blacklisting those who speak out against them, disagreeing with them in some way.
Today, Ari Ne’eman announced that he was stepping down as president of ASAN. In response, Melody from the blog ASparenting responded. They (I am unsure of their preferred gender pronouns, please correct me in the comments if I’m wrong) point out that ASAN works their chapter leaders and employees until they burn out or have enough meltdowns to cause disciplinary actions. Once the people have burned out, ASAN erases them from the things they accomplished.
This practice really brings to mind 1984. Winston Smith works at the Records Department at the Ministry of Truth where he rewrites historical documents (e.g., newspapers, textbooks, etc.) erasing people who played their role to perfection by admitting to crimes they never committed and lives they never lived. (SPOILER) Of course, he eventually becomes one of those people.
They point out that, presumably, Ari Ne’eman told a joke that “College dropouts are the best workers” as “a way of reminding his staff they had nowhere else to go. You didn’t have the degree or skills to work elsewhere. You couldn’t live without the job, if you call choosing between rent or health care living.”
They point out that these practices have been going on since the beginning because of silence. Something that I can attest to because I have seen nothing public, save this post, that calls ASAN out. The organization is strong. It is as strong as Autism Speaks in some sense. Strong in that it can bully those of us who can see the good it is doing into silence. But it is not all good.
This is an organization that I praised in my thesis. I couldn’t find anything. And I do believe that they want to create a positive image of autism. But they cannot do that when they are bullying anyone who disagrees with them into silence.
The Table Analogy
And so I find myself at a crossroads. One where I am deciding right here, right now, with the writing of this blog post. Do I maintain the silence or do I speak up? Well, here’s my thoughts on this.
I remember reading Michael Monje Jr.’s amazingly sobering post It’s time to accept that they hate you and focus on coming together as an autistic community and building our own structures and KEEPING THESE STRUCTURES.
As Michael points out,
We’re committed to tradition,
but a tradition of building, of handing the means down democratically,
and that means we’ll abandon communities that don’t meet our needs,
because we’d rather have all our voices than have our voices be the loudest.”
But now, I want to focus in on one part:
“We haven’t had a move like this since the person-first argument,
but it’s time we did, because we’re losing our structures.
We built them, but let others own the domains, run the e-boards
and ultimately, they steered our ships off course
Somewhere several weeks ago (damn selective memory, can anyone else remember? I want to attribute it), I read someone say something to the lines of, “The problem with ASAN is that they are content with simply a seat at our table.”
As I was writing my thesis, my thoughts constantly turned to Autism Speaks and the Autistic Self Advocacy Network and how messed up they are. What was the alternative? I kept asking myself that every day that I wrote. WHat’s the alternative? What’s the alternative? What’s the alternative? It became my echolalic mantra begging me to find the answer.
And then I picked up Autonomous Press’s The Real Experts and read Nick Walker’s second article, “This is Autism.” And I was amazed because, in my thesis, I specifically look at one single article that Autism Speaks had published, Suzanne Wright’s “Autism Speaks to Washington – A Call for Action.” One of the lines that Wright uses multiple times is “This is Autism.”
I e-mailed Nick and found out that there was an entire flash blog that addressed that article, specifically pointing out what autism ACTUALLY is by actually autistic people. I was also amazed because I had found ASAN’s response to Wright’s piece and they address her piece exactly. Something to the lines of “Wright says this, this is incorrect. Wright says this, this is also incorrect.”
In his book “Don’t think of an Elephant,” George Lakoff talks about the flaw of the independent party. Republicans and Democrats say something to the lines of, “Y0u are going to tax everyone.” The independent party usually responds with, “No, we are not going to tax everyone.” By saying this and responding in this way, the only message the audience hears TWICE is “going to tax everyone.” The best way is to respond to a wild accusation is, as Michael points out in her post,
We win by not engaging, but still responding
The flash blog is a perfect response to Autism Speaks and Wright’s article because it is responding without engaging. It is saying, “This is autism” and giving actual examples by actually autistic people, not just a grandmother of an autistic child who thought (thinks?) that vaccines cause autism and that autism is akin to death and abuse.
Burn the Table
One of the things that my thesis addresses the most is how non-autistic people have been allowed to control the discussion on autism. This discussion is the table. This discussion about us is controlled by those who sit at the table. As that person who I cannot remember pointed out, ASAN is content with simply a seat at the table.
I am not, fuck that shit. This is our table. But here’s the reality. I hate Autism Speaks for what they do, I hate the Autistic Self Advocacy Network national for what it does, the only thing that I don’t hate is the grassroots activists who fight to address bullshit in the best way bullshit should be addressed: flushing it down the gods-damned toilet.
And so I find myself in an almost anarchic position. Activist and advocacy organizations, even if they set out to do good, will become corrupt and, even if they do good, they also burn people out. But I wonder if they are two different things: activist organizations and advocacy organizations.
Was my thesis about advocacy or was it about activism? I think it started out as advocacy, but slowly morphed into the pain and murkiness of activism. Advocacy is okay with simply a seat at the table. Activism, well, activism kicks everyone off the table who doesn’t belong there.
But here’s the thing. Activist organizations that kick everyone off the table who doesn’t belong there are just as likely to become corrupt. And so, my thinking is burn the gods-damn table once and for all. We don’t need tables to eat, we don’t need tables to talk, let’s eat and talk without a table to separate us. Let’s remove the hegemonic Audre Lorde’s tool that is the table once and for all.
I’m not quite sure what the table is or how to burn it, but I am certain that we need to burn it. It has caused nothing but separation and pain. Is the table ableism? The internalized ableism we feel and hold when we discuss autism? I don’t know.
And how do we burn it? First, we have to acknowledge that it is there, then we have to figure out just what it is.
ENOUGH! Now on to reality
Okay, enough now with the table analogy because I’m finding myself confused by it. Let’s try this with what I actually see. We do what Michael recommends, accept that a lot of people in the world hate us and not engage with them, but respond to them. Then, we begin to discuss and take over the discussion on autism and intersections of autism and (insert intersection here).
We control the conversation. We set up structures similar to relay races, everyone participates in the conversation as it works for them, everyone has a say. If someone starts feeling burned out, they pass the baton to someone else and bow out for as long as they need to practice self-care.
I went to a presentation last year at Computers and Writing where the presenter said that the most powerful political action and act of resistance we can take is to take care of ourselves. That would be the first and foremost goal: take care of yourself.
I think I am going to be done here because I am nearing 2000 words (whoops, this turned out a lot longer than I had been expecting.). But something that I think I would like to look at further is the difference rhetorically between advocacy and activism. Because even though they have overlap, they are not the same. Similar to awareness vs. acceptance. But that is for another time and another post. And now, I fall over at 1979 words.