Tuesday, August 5, 2014

Nonspeaking. Real. Self-advocates.

I left a comment on a thing and I'm sharing it here because it's everything I am always wanting to say to people who pull the "high functioning self-advocate" card.

This post was made on Facebook not long ago by a very popular page. It is an image of a tweet from someone who calls themselves "God." (the idea behind this is to make common-sense statements about humanity and how it keeps mistreating its members and making terrible choices as a species.)

The text reads "Some people think autism is a disease that needs a cure. It's not. Autistic people don't need to be cured, they need to be accepted."

Of course, the comments that followed were all about "My nonverbal son who has a low IQ and needs constant care because he blah blah blah and the kids I work with are lower functioning than the self-advocates who say that they are just different and blah blah blah real autistic people don't have a good quality of life and they're aggressive and they are unable to blah blah everything because they can't anything..." 

...and lots of other dismissive, deficit-themed things that completely insult the way many Autistic people live, with many needs and struggles, some of them embarrassing, none of them shameful but all of them being used to dehumanize my fellow Autistics into incompetent, helpless tragedies (people are not tragedies. they are people.) But I'm getting a little ahead of myself. You'll get to read my rant a little further down the page here.

One woman named Mia even wrote "Dear God, my son is autistic. He cannot talk. He will never in this life have full use of his intellect because he is now too old to develop language skills."


Tell that to Carly, who didn't even begin typing to communicate until she was like 12 and now she's going to college independently. Oh, and Emma, who I think was even older when she started typing to communicate and who's that going to college? --oh, that would be Emma.

Of course, these comments have managed to make me feel hopeless, helpless, anxious, and frustrated. They make me want to cry or panic. They make my brain scramble for the words to be understood but my brain is so anxious that I cannot grasp all the whirling thoughts with my chest so tight and my brain constricting. Instead of thinking too much about the negative comments, or getting drawn up into an ill-fated argument with each and every commenter like I am unfortunately prone to doing... I opened up a comment box and I let loose with every passionate thought that I had and explained, as neatly as I could, exactly what my opinion is of people who talk about my friends as though they are hollow sacks of not-person who got stolen and replaced by bad terribleness.

The final product is as follows.

Philip Reyes. Tito Mukhopadhyay. Emma Zurcher-Long. Emma Studer. Henry Miles Frost. Amy Sequenzia. Tracy Thresher. Larry Bissonnette.
 Guys, educate yourself on the number of nonverbal/nonspeaking neurodiversity advocates there are, and there are quite a few, before you make offensive comments about how "low" their quality of life is just because they need extra care. The stuff you people are saying is really offensive to my friends. 

Read any of Amy Sequenzia's essays1 on how insulting it is when you talk about her "low" quality of life and use pity language to talk about her. And then read "Two Houses" by Henry Frost because seriously. You are being told right from the horse's mouth, as it were, how your paradigm makes Autistic people feel and you still aren't listening.

Your attempts to invalidate us by saying that we are all high-functioning "quirky" Aspies and then listing everything that you think is wrong with your poor "severe" kid's life is insulting not just to me and my very real challenges, and my so-called "high-functioning" friends who were speech delayed as children, who endured ABA therapy, who have frequent meltdowns, who have been constantly kicked out of school and sent to the principal's office, who have pronoun impairments, who have faceblindness, who have sleep disorders, who have movement disorders, who have seizures, are motion impaired, balance impaired, spatially impaired, who struggle with self injurious behaviors like biting and head-banging, who wander or elope when it's not safe, who have been institutionalized, who have been homeless and jobless, live in adult foster care, need support workers to help them perform ADLs and IADLS, and usually can't get the services they need, who have been accused of acting out, manipulating and throwing tantrums, who suffer from sensory overload and burnout, who struggle with selective mutism, who have been abused, taken advantage of, manipulated, used, assaulted, restrained, secluded, neglected, tortured, beaten and raped because of their disability -- but to all of my nonverbal or verbally nonfluent brothers and sisters who are fierce self-advocates and do not need your pity and your condesplaining. And I will defend them tooth and nail until people stop painting them as incompetent, helpless victims.

Oh, and Mia: My friend is in his mid-20s and he is learning to type. It is never too late.

Okay, guys. Rally.

Peace, love,


1 Amy's essays:
It is About Respect

Non-speaking Autistic Activist Responds to Suzanne Wright of Autism Speaks

We Are All Part of One Spectrum

Beyond Stereotypes

The Presumption of Competence

I Feel Tired

A Message to Suzanne Wright

My Friends Are the Real Thing