Ally Paternalism in Autism Advocacy

Autism Wareness Month 2018 is rapidly approaching. And already in March we’ve had several…. Incidents… Of advocacy gone awry.

There’s the usual sort of paaarent nonsense. Parents making their autistic kid into a spectre of dashed hopes for the American dream (of seeing elmo in a crowded amphitheater… Just as a random completely unprecedented and not at all recurrent example… \s). But I’m not writing about that today.

Today I’m writing about that other thing. That thing that people do. Parents new and excited about the Neurodiversity movement. Parents totally and completely in to being allies to autistic activists. Parents totally pumped to…. Enthusiastically suggest things that have been suggested literally every year for a decade now with absolutely zero historical, dare I say it, awareness. That thing.


Yall no.

Please believe autistic adults. We go through this over and over again. Some of yall are more or less willing to listen to us about our experiences as autistic people. But precious few of you seem ready to listen to us about our own past activism history. Autistic adults have been advocating, resisting, and fighting this fight for a while. So. L. I. S. T. E. N.

1) No. Acceptance does NOT need Awareness

This one is especially infuriating because there are well known historical examples across disability communities.

Awareness the noun and Awareness the campaign strategy are two different things.

Awareness the noun is just… Knowing things about stuff.

Awareness the fundraising campaign strategy is tragedizing, othering, inspo-porning, telethoning, aren’t you glad you’re not like THOSE peopleing, thoughts and prayersing. Awareness the campaign strategy is Allison Singer (then Senior VP of Autism Speaks) telling the camera that she fantasized about driving her autistic daughter off a cliff. Awareness the campaign strategy is disengenuous advertisements and flyers of the never smiling, never loving autistic child tearing happy couples apart. Awareness the campaign strategy is BEWARE. Autism is SCARY AND SAD AND A PUBLIC HEALTH CRISIS AND A BURDEN ON “NORMAL” PEOPLE.

THAT’S AWARENESS. Awareness is Bewareness. There is no other kind.

Acceptance is more than knowing things about stuff. Acceptance is knowing that you don’t know everything, and knowing that knowing everything isn’t a prerequisite to regarding people who are different from you with dignity and respect. Acceptance is “I can recognize that autism is an innate difference, and I don’t have to know every single thing about it to know that an autistic person is a person worthy of life and fulfillment.” acceptance is “My kid is autistic. Accepting their differences is an act of love. Learning how to support them is an act of love. Teaching others how to accept and support them is advocacy.”

Teaching others about how an autistic child impacts *you* and makes *you* struggle is Bewareness. Bewareness is deadly. Singer’s appearance, mentioned earlier, in” Autism Every Day” was used in court defenses of parents who murdered their autistic children. I say it again. Awareness is deadly.

Acceptance does not need that kind of awareness.

“but that’s not what I mean when I say awareness!” you shout.

Crying elmo mom begs to differ. Until yall can break this pattern of telling our stories and tragedizing our existences then yeah. That IS what you mean when you say awareness.

And you know what? It doesn’t even matter if you could somehow “do awareness right” – We asked you not to. I thought you were into listening to us.

Good. Glad we’ve cleared that up. NEXT.

2) ‎NO. We can’t / shouldn’t / won’t reclaim the puzzle piece!

Here’s the thing. In this current climate, any efforts to reclaim stigmatizing symbols just get washed out by the fact that other people are still actively using this symbol to dehumanize us.

We can claim that we are “reclaiming” the puzzle piece, but in the end it just looks like we agree with the dominant narrative. That we’re enigmas missing solutions. The puzzle piece is not and has never been about people coming together. About people belonging. It has always been about how our brains are broken and that there is some magic piece that will make us whole. That’s the metaphor. That’s the message. That’s the original intent and the one that pervades public perception.

I don’t know how to say this…. Politely? As in… With the necessary amount of fluff words to suit allistic sensibilities.

Listen. Yall don’t understand reclamation.

Reclamation is a specific process. Generally it refers to appropriation of a term that is used by outsider groups oppressively by the oppressed group who chose to use it positively.

While many of us find the puzzle piece oppressive, it isn’t the same as a slur or a mark (like the black triangle).

Because it isn’t a slur.

Because it’s oppressive but not expressly derogatory.

This makes it difficult if not impossible to reclaim.

Reclamation works by shock.

Suddenly your target group is using your chosen slur with pride. They’ve stolen power from you.

We can’t steal power by using the puzzle positively. Because the current puzzle metaphor is oppressive, but not pejorative. It’s paternalistic.

We can’t redirect its power in this context.

That’s why we make our own symbols. We redirect power by rejecting paternalism. We reject the puzzle piece as an expression of our power and agency.

This IS how we’ve reclaimed autistic btw. Autistic became a public slur. And parents wanted “with autism” because they wanted person first language to reinforce their hopes that a normal child was in there somewhere.

In this context, autistic was pejorative AND “with autism” is oppressive and paternalistic.

So we can and have reclaimed autistic as an identity because we took something pejorative and integrated it into our self concept positively while simultaneously rejecting the paternalistic “with autism”.

So to recap.

We don’t need awareness. That word doesn’t mean what you think it means. Acceptance is the message we are going for. Move on.

We don’t need the puzzle piece. It isn’t worth “saving”. It’s a trash fire of a metaphor. Move on.

There are real problems that need real human power to solve. Like inadequate transition planning, absence of adult services, particularly for “independent” adults, academic inclusion violations, discriminatory immigration policies, etc etc etc. Pick something.


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