PART I: Advocacy and April

TRIGGER WARNING: Autism Speaks, Autism Awareness, light it up blue, ableism, cure talk, ABA

As T.S. Eliot proclaimed, April is the cruelest month … 

The best way I can describe Autism Awareness Month is as follows:

Every April there is a massive music festival. It’s packed with people wandering from one stage to another, listening to different voices and different instruments and different styles, but all sharing an experience. The experience is autism.

I hear that I, as an autistic person, am headlining a show. I see the empty stage before me, between the heads and shoulders of people bigger and taller than me. I am clutching my music in one hand and staring at the microphone with excitement. Finally, a microphone for me. I start to push through the crowd saying, “Excuse me,” and “Please let me through,” when suddenly someone else starts singing.

On the stage that was set for me. 

Although I keep pressing for the stage, I can’t seem to get any closer. The people around me are hot, sweaty, intoxicated on their own self-righteousness. They hold up their lighters and sing along to the song someone-who-thinks-she-knows-me is singing about me, about the sacrifices she makes to be my friend, about how even though I don’t feel love it doesn’t mean I shouldn’t be pitied. 

“I feel love!” I shout, but no one can hear me over their own voices. They all pretend to know me. And I start to feel angry. “Don’t talk about me. I am here. I can share my own stories. I have written my own songs. You are getting it all wrong.” 

And then someone shoves me backward. Hard. A mosh pit immediately widens and I am thrust from one set of rough hands to another, my head bobbing on my neck, tears dripping on my shirt. “Stop making this about you,” someone snarls and I say, “But it’s my name up there, not yours. Isn’t this one thing about me? And not about you-about-me?”

Back and back they pummel me, grunting with the effort because I do not go easily. Their faces are red, their lips pulled back, “You can’t take this away from the people who love the unloving. You should be grateful to be pitied when you are unloveable.” 

My sheet music is crumpled, torn, and I am in the very back. I can still hear the person on stage singing but I can no longer see her for somehow I grew smaller. I am curled up, my face and arms scratched, bruises blooming on my neck like dark roses. This festival is not for me. It is not for my tribe. It is for people who know autistic people not for autistic people themselves. I do not belong here. 

On April 3, 2019, Healthline published an article by Rowena Gonden entitled, “How to Make Your Relationship Work When Your Partner Has Autism” . The URL of this article includes the phrase how-to-live-with-a-spouse-who-has-autism. Healthline has marked this article as fact checked, claiming to follow “strict sourcing guidelines”. The website wants to be your most trusted ally in your pursuit of health and well-being”.  

Yet another article dehumanizing us, perfectly aligning with everything Autism Awareness, Autism Speaks, and Light it Up Blue support: ableism, stigmatization, stereotyping, talking on behalf of and/or about autistic people. Treating us like puzzles missing a piece, needing to be put together or solved (or cured). Yet another article taking an eraser to the autistic experience, removing it from existence entirely.

This article destroyed me. I am an autistic person married to a neurotypical person. Everything in this article demonized the very essence of who I am and celebrated my husband’s heroism for tolerating and surviving in a marriage with me. I know it’s not true but it is still harmful and offensive. It still teaches lies. I realized I had two options. I could let this article consume me, erase me, or I could find a stage and sing.

So, in honor of Autism Acceptance month and #lightitupgold  and #redinstead, in Part II, I have offered a constructive, section-by-section critical analysis of Gonden’s harmful and ignorant article. This is the best way I can channel the negative energy I feel into something positive — an opportunity to educate. All hope is not lost.

In Part III, I have written an alternative, inclusive article balancing the neurotypical voice with an  #actuallyautistic one. I also will link to my sources and to other wonderful resources that the autistic community supports. This is the best way I can erase the erasing and rewrite an autistic experience in permanent ink.

This whole project took me almost two weeks because of how soul-draining it was, reading and re-reading about how odious we are and then proving we are not odious. Every sentence in the article is a condemnation. I could only work on one section at a time and spent at least twice as much time recovering.

But, it was worth all of the effort and heartache because this is important work. And the work all of the #actuallyautistic folks are doing is important, too, whether it is writing autistic characters, celebrating pride, advocating online, coming out to loved ones, educating the parents who want to learn, and/or finding self-love and care.  

I stand in the parking lot with other autistic people. We have our own festival. We sing, play guitar, dance. We blow bubbles that sparkle and rainbow in the sunlight. Our festival is small but our collective voices are loud and only getting louder. We are not unloved. We are not unloving. We are not alone.

This entry was posted in April 2019 and tagged , , . Bookmark the permalink.

1 Response to PART I: Advocacy and April

  1. Pingback: PART I: Advocacy and April — TheChandChronicles | Another Spectrum

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s