By Katie Miller
Protests exhaust me, but not in the way you might think. Granted, it is a lot of work to prepare. The night before ASAN’s recent protest of Walk Now for Autism Speaks, a handful of us were making posters and researching the data to make sure it was correct. We worked from 2 pm until 1 am. Being the artist of the group, I alone didn’t go to bed until after 3 am and got maybe two hours of sleep.
But that’s not the kind of exhaustion I’m really talking about. I love nothing more than getting together with friends and working toward a common goal. What exhausts me most are the feelings I have during and after the protest. I can’t get the apathetic expressions of the people walking “for” autism out of my head, and I can’t stop talking to them, arguing with them, defending myself from their unkind words as I go about my day. This kind of exhaustion, combined with over stimulation from the event can and did wipe me out for a week – rendering me unable to work and limiting my daily living skills. In fact, it’s kind of a miracle that I wrote this; it’s one of the only times in my life that I’ve been able to sit down and write something in one go. I don’t know what to make of that.
This past Saturday was the third ASAN protest of Autism Speaks’ walk that I’ve gone to. In some ways, it was better than other years. We had no food thrown at us this time! I only received two or three f— yous, and only one person tried to start an argument and get up in my face. It also seemed as though far fewer people participated in the walk than in previous years. (While the reasons for this could include the economy, the recent hurricane, or the cold and windy day, the sliver of optimism in me thinks maybe we are actually making an impact.)
What we did was simple: We stood in the grassy area our permit allowed, right next to the sidewalk that the walkers come down. We had over 20 signs, some staked in the ground and some held by hand. We were friendly. We smiled. We attempted to look at people’s faces. We held out fliers and politely repeated things like, “Would you like to hear from Autistic adults?” and “Autistic people are speaking. Who is listening?” We peppered these communications with smiles, genuine compliments (super sparkly hats, adorable dogs, etc.), and encouragements such as “Thank you” and “Enjoy your walk.” We were not hostile. We did not chant, yell, or march.
Yet the very presence of Autistic people being against an autism walk angered people.
One man, a tall and intimidating guy with a football coach bark, came over and attempted to be civil, but as he got in my face, his voice didn’t mask his underlying hostility. He started with, “You know, we’re all on the same side here. We all want the same thing.”
I attempted to talk, but he kept interrupting me. I backed away, again trying to explain, and he got more in my face. “You all should work together,” he said.
I snapped. I blurted. “I’m Autistic and you’re in my space and it’s making me anxious and you should know better!” I started to tell him that he was silencing me and explain that we can’t “work together” with Autism Speaks because we have about zero goals in common. Then I tried to begin talking about power imbalances and so forth, but he interrupted again to claim he didn’t know I was Autistic. Yeah, right. I’m wearing an “I’m Autistic and I’m proud” button and holding two giant signs, one that uses PECS images to say, “I want / Be Heard / I want / Autism Speaks / Quiet,” and another that reads, “I’m on the Right Track, Baby I was born this way,” accompanied by images of glowing, glorious, glittery brains.
That man knew damn well I was Autistic when he confronted me. He wasn’t shaking his head, confused as to who we were or what we were doing, as some people have been in years past. He was familiar enough with us to march on over and proclaim, “We-both-want-the-same-things-let’s-all-just-get-along.” But you know what? He’s wrong.
Sure, you could say we’re both on the same side in the sense that we both want what’s best for Autistic people and our families. At least I hope so. With the presidential election recently behind us, I liken this to how people of differing political parties tend to all want what’s best for their country and the people in it. But once you get any deeper than that, the common ground starts to fade away and core beliefs and actions are often diametrically opposed.
Another man that the Angry Coach Man was with waited for him on the other side of the sidewalk while my colleague gave the Angry Coach Man a talking to. Sidewalk Man said, “Well, how much money do you guys raise for autism awareness?”
I said, “None. We don’t do awareness.”
He quipped, “Well, there you go,” as if that proved his point. I didn’t know what his point was.
I should have told him we raised over $270,000 last year to fund our actual programs and advocacy work. We do tangible things to help people live better lives, not run ad campaigns on how we’re a public health crisis that’s taking over America. We value acceptance, not awareness, which in its current form is quite damaging. And we were started by a handful of young, broke Autistic people working on an entirely voluntary basis a mere six years ago, which is pretty f—-ing incredible, thank you very much.
But of course, I can’t recall information like that so quickly, and certainly not enumerate all the things ASAN does, especially when I’ve gotten no sleep, and I’m overstimulated and near crying because of the Angry Coach Man. It was all I could do to keep myself from melting down in a crying puddle or screaming, “You’re mean and wrong!”
But did either of them take their time with me, slow down, let me get my words out when I was obviously struggling? No. A lot of good all that autism awareness did them. They failed at interacting with an Autistic person. They used their power and privilege to talk over me. An Autistic spoke, and they didn’t listen.
That interaction lasted maybe two to three minutes. Most people were friendly. Many of them did take our fliers. (A few threw them away immediately seeing what they were, and one woman doubled back and jammed them in my face, but whatever. At least it wasn’t food.)
Mostly though, when asked, “Would you like to hear from Autistic adults?” people politely said or shook their heads “no.” Many even said, “No, thank you,” if they didn’t ignore us completely.
Hearing that over and over again for several hours is really, really draining. It is draining to see people repeatedly demonstrate what we know has been true all along: Most people in the autism world do not care what Autistic people actually think about things. This is such the norm, that hundreds of people out with their families find it perfectly acceptable and freely admit, with smiles on their faces, that, no, they don’t want to know what Autistic people think about autism.
That repetition was so heartbreaking. They were so nonchalant about it, as if it is the most natural thing in the world to be walking “for” autism, autistic kiddo in tow, and openly admit that you care not a lick about what Autistic people think. What message does this send to Autistic kids, teens, and young adults who were on this walk? What message does it send to the non-Autistic kids and other adults there? I’ll tell you: It sends the message that Autistic people don’t matter, especially when they have opinions. It sends the message it is not only normal, but perfectly all right to ignore and silence people who already have trouble communicating as it is. People who are in the minority, who don’t have lots of money for ad campaigns, and for whom events like this are among the only opportunities to get people to listen.
It pains me most of all to think of the kids who are getting this message from their parents’ behavior. I hope they didn’t pick up on it. I hope they didn’t pick up on Autism Speaks’ messages of devastation, need for a cure, and amount of money they cost their parents. I hope the megaphones and loud dance music of the Walk’s staging area didn’t overstimulate them the way they did me when I walked past them to use the Smithsonian bathroom. And I really hope they saw our very first sign, “You Are Perfect the Way You Are,” and our second sign, “Autism Is Awesome. You, Kid, Are Awesome.”