Tuesday, April 15, 2014

Being Cool vs. Being Awesome During "Autism Awareness" Month

So one of the online "communities" with which I identify is that of Nerdfighteria and the Nerdfighters the group of fans formulate(d) around the brothers John and Hank Green. Not to brag, but I was one of the first subscribers to their online social networking site, the Ning (link to the right), and really enjoyed "hanging out" there for a while, even had a dude admit he was in "Nerdfighterlike" with  me after  a while.* But like with any online group, the more members it got, the worse it became- trolls invaded, and I honestly can't remember the last time I looked at the site, let alone logged into my account. Somehow, I can't remember how long ago, I found out about a Facebook group called "Adult Nerdfighters," and I once again became an early-on member of that group. I rarely scroll through the page or do much engagement with "discussions" there nowadays (if I post stuff, it's funny gifs or videos) because, once again, a bunch of assholes have sort of ruined it.

I'm in two offshoots of Adult Nerdfighters, though. Nerdfighteria Kitchen, where people just talk about cooking and food. That one doesn't get controversial or mean, and it's still relatively small (I even posted a picture of myself in my Batman apron and got lots of positive response, while I know the trolls in the AN group would have called me fat or something). And on a whim at the beginning of the month, I joined another group called "Single Adult Nerdfighters,"  which is also fairly small and, so far, hasn't been too bad**. 

But leave it to a discussion about disability to piss me off and feel like I'm back to the same old situation, where a person that refuses to listen but insists on "discussing" pisses me off. I'm hoping it was a fluke, but there is reason to stay, and I'll get into that now.

So a thread about velociraptors  (because of this video) started to become about how we, as nerds, often make ourselves look, um, silly, and get made fun of. And one of the people in the group said this in the thread:

"Yes, it's hard to be cool. It's so much easier to be awesome."

And I was like, 


That's exactly what I love. The Nerdfighters I can relate to, the ones I think  really get it (because if the Brothers Green knew about the trolls as individuals, they wouldn't like  them, I'm certain), are like that. They're encouraging, supportive, empathetic, kind, and open-minded. They care if someone is hurt, and if they think they caused the hurt, they go back and apologize.

So in the bad thread I mentioned, a few people were spouting ableist dogma about how ASD needs to be cured, how it means there's "something wrong" with the brain of the person with the diagnosis, and some of them were buying into the myths of savants and crap like Rainman. There was a lot of "supposed to" and "wrong" in the language- very ableist, no doubt about it. And they were talking about how great Autism Speaks is. 

That made me want to vomit. Autism Speaks is one of the most guilty parties when it comes to the spread of negative stereotypes and discourses about ASD specifically, and disability more generally. I hate that stupid blue puzzle piece- it implies there's something missing from the person with ASD, or the lives of their family. That's not true. Not true at all.

I should know. My brother has ASD.

Now okay, I'm not saying every person with ASD or their family should agree with me. But Autism Speaks focuses too much on the grief aspect when it comes to families, and not enough on practical support or acceptance.

And they have a close bedfellow in the National Autism Association- both discuss the "epidemic" of autism in their literature, have videos and ads that look like horror flicks (tell me this isn't creepy), and don't actually provide direct support for families like they profess they do. Oh, they'll take your money for a toolkit (say one like this ), but how about this to sort of get the gears going:

I get really sick of organizations like Autism Speaks and the National Autism Association because they spread the message of fear and make it seem like all happiness is forever lost out of your life if you have a kid diagnosed with ASD. They perpetuate the scientifically unfounded myth that autism is linked to vaccines, as well as that it's "on the rise" because of some external factor leading to more people having it.

Autism isn't "spreading." People are just testing for it more, and specialists are better at recognizing it. What used to be just "awkward" is now in the DSM as "Asperger's."

This negative treatment of ASD is what disability scholars refer to as the "medical" model of disability. It focuses on diagnosis and finding a "cause" and "cure" for the respective anomaly; it frames disability as a tragedy that the caregivers have to deal with; it relies on the "expert" opinion of someone without the disability, and thus it doesn't really acknowledge the person with the disability theirself very much. Any reference to them is abstract and indirect. If you've ever seen a doctor do the recording for an autopsy in a movie or on a TV show, it feels like that- disconnected, observing as opposed to actually participating and giving two shits on a personal level. (For my take on some other models, see my piece about Iron Man 3.)

So I hate it when I see crap from these people, and I hate shopping during April because stores sometimes join the bandwagon and have clerks ask me if I want to donate to AS or NAA. I went off on a defenseless young woman at TJ-Maxx last year over it (I did go back into the store and apologize to her, explaining myself, and she actually seemed to listen, though, so maybe it helped?).

Imagine my frustration when I saw an email from the NAA about a Chili's event (I'm on their email list because of some research I still have in the pipeline, if I ever finish my Ph.D.). Fortunately, I didn't get the chance to do much, because I was about to start our seasonal group meeting at the store I work at. Instead, I deleted it really quickly, intent on sending a counter-message via Twitter and Facebook about how people should AVOID Chili's on that day because reasons. So then imagine my haughty satisfaction when I got home from said meeting to see a retraction email, the content being:

"Please disregard our previous email. We are very sorry to report that Chili's has cancelled tomorrow's event."

I'd like to think it's because enough people gave Chili's negative feedback, but I'm sure there were other reasons. Reasons related to things like "logistics" and "profit," rather than discourses and hegemony and stigma and acceptance and accessibility. 

So what does this have to do with Nerdfighteria?

Well, this is how I'm awesome, not cool. This, right here.

I mean this blog, for one thing. I know it's just a blog, but if at least one person sees this and reconsiders their approach to disability, autism, or ANYthing because of what I'm writing, then job well done, self.

I also mean in general. I'm a mama bear, and I stand up for people that can't do it for themselves. I send counter-messages whenever I can.

So here's my counter-message vis a vis AS and NAA:

Autism Acceptance. 

"Awareness" implies danger. It implies caution and fear. It comes out of the mouths of non-ASD persons.

"Acceptance" implies inclusion. It implies warmth and  happiness. And it comes out of the mouths of persons with ASD.

Sure, we're more "aware" of autism, which is exactly why more people are getting diagnosed with ASD each year. It has nothing to do with diet, with vaccines. Not directly, at least. I'm willing to say that maaaaaaybe there's some abstract link, like  if the kid's genetic makeup already has these zillion other things, it makes ASD more likely- but direct cause, no.

Here's the thing. The people that buy into groups with messages like AS and  NAA, they're grieving. And that's fine. Because of ableist paradigms embedded in our norms and institutions, discovering your kid  has a disability today is a shock, a blow, and yeah, can feel pretty tragic.

But the next step is acceptance. If an organization wants to help families,  it needs to help them with actual support. With teaching them how to adapt so that they and their kid can live the fullest, and, here's the key, HAPPIEST, lives possible. Will it be easy? Probably not. But acting like all bets are off will never give that family the chance to embrace any joy that comes their way, or will taint said joy with the ominous clouds of disability and autism.

So in April, I try to remind people that we only  think there's something  "wrong" with ASD people because society places a higher normative value on a specific set of behaviors, one that excludes behaviors associated with ASD. "Wrong" is the wrong word to use. It should be "different." Or "atypical."

In April, I promote full inclusion. Meaning being understanding if a person doesn't quite interact like everybody else, not calling them a jerk or something. I do my best to try to encourage others to be understanding and open-minded.

In April, I remind people that you can't "catch" autism, and you certainly can't "cure" it. That disability is natural, and we shouldn't  decide how salient a person's disability is when it comes to their identity- that the salience of said disability should be  up to them and them alone.

Brief example.

So I usually use People-First Language, but some persons with disabilities self-advocate differently. They will say "autistic" instead of "with autism," and that's their right. Out of general respect, as a person without a diagnosis, I try to use PFL when talking about specific diagnoses; I do, however, say "disabled" when talking gernally, as that's what I've come to realize is acceptable both in academia and the real world. If I ever write a dissertation, I could do a huge chunk on that very topic. But my point is, I let the anomalous individuals decide how I refer to them. That thread I mentioned had a lot of non-pfl, and it irked me. I didn't see the "c" word, but I did see "handicapped" once.


So to get back to that ableist thread. I did my best to point out the problems I saw in the diction and assumptions being made, backing down when it seemed a few people were just not listening. But just before I stopped notifications on the thread, a gal that had already declared herself ASD in the thread (and that had also been going at it with the meatheads) posted this:

thanks for posting about problematic language. I've been told implicitly and explicitly all my life that my natural way of being is Wrong--and this is coming from someone who studied and mimiced [sic.] and practiced in the mirror so much as a very young person that I didn't get diagnosed until I was 32. Most people would never guess I'm on the spectrum, because I learned so well to hide the parts of me that are "wrong." It breaks my heart to think of all the millions of people who have fought and are fighting so hard every day to be Not Themselves because they've been assured that their brains are Wrong. We aren't Wrong, we're Different."

She desires acceptance, not awareness-she wants to be who she is and not hide. I felt pretty good about that- I had reached her, even if she wasn't the target of my contribution to the discussion. I helped her feel like there are people that do care and would accept her for who she is, which is a wonderful, caring, amazing Nerdfighter. It took a lot more guts to "out" herself than it did for me to get all jargony, I'll say that now.

So. I call on you, for the rest of the month, I ask you to consider donating to groups like Autism Acceptance, or the ones listed in the infographic; to counter someone talking about "awareness" with a message of "acceptance." You'd be doing something really positive, and believe it or not, at least for a moment, fighting back against ableist paradigms and institutions. Try not to forget that, and also, 

*Obviously that went nowhere. Turns out,  he was a closet MRA and anti-feminist. I shudder at the memory. He unfriended me on Facebook because I wouldn't say he was right, I think about rape culture...? I don't even remember, douche.

**I'm still contemplating it- I see more stuff about dates and relationships that are current and ongoing here than I did in the other group, and the whole point of joining was to commiserate with fellow singles about, you know, being single, not congratulate people that aren't for their accomplishment(s). Sigh. We'll see...