I attempt, with trembling hands and elevated heart rate, to capture my thoughts about the latest in a targeted series of propaganda orchestrated by the leadership of a highly privileged, well-connected grievance fringe group notorious for mischaracterizations and exaggerations so egregious that they rival best-selling fiction novels. As triggered as I am by these incessant attacks and lies, I don’t think I will be successful at accurately conveying what is inside my head and my heart, but I will still try. Maybe I’ll start with some echolalic reasoning to self-regulate.
My mother used to roll pantyhose onto my legs (which, being autistic, was a far-from-pleasant sensory experience) on certain special occasions when I was a child. She placed bandages on my skin when I had cuts or bruises (which, due to my poor motor coordination and my self-injurious behaviors, was often). And she purchased crayons for me to draw and color with. All of these things had at least one thing in common: their name. The pantyhose, bandages, and crayons that were named, “Flesh” all shared the same peachy tone. It was the universal color of “flesh.” And it looked nothing like my flesh, nor that of the majority of humans who reside on this planet.
It didn’t stop there. The combs handed out at school on picture day were incapable of doing anything with hair like mine. The sunscreen sold at stores made me look like a space alien. It was nearly impossible to find skin, hair, or makeup products outside of specialty stores. The “name” bracelets and keychains sold in most places never had names like mine. The characters and revered figures depicted in history textbooks, most literature and cinema, etc., never resembled me. Nor did the super heroes, models, protagonists, religious icons, political leaders, professionals, scientists, animated characters, or anyone of importance.
Worse than the erasure, however, was being forced to embody a role that I’d never even chosen for myself.
People with power had already made their minds up about me, and people like me, based upon whatever characteristics they *assumed* they knew, according to their (skewed and inaccurate) perceptions.
I was an impoverished, Black, disabled little girl from an immigrant family, so they already had a narrative developed for me about who I supposedly was and what I was supposedly like. Thus, they only concentrated on the things that seemed to confirm their biased hypotheses, disregarding anything that differed from it as untrue. Of course those weren’t my “real” grades; I must be cheating. Of course if something was missing or broken in the classroom, I must be the culprit…certainly none of the White, nondisabled children could be responsible. My movements and words were decoded as impolite or aggressive even when they were not. Unfounded stereotypes and assumptions related to sexual promiscuity were formed on the basis of the figure I inherited from my ancestors. And I was not allowed the protective layer of childhood, as, like many children of color, I was often assumed to be (and treated as though I was) much older than I really was.
I couldn’t be “me” because the “me” I really was evidently did not exist. I existed as whomever/whatever they perceived me as.
I wasn’t even deemed important enough for anyone to attempt to learn how to pronounce my name. Since it wasn’t considered a “normal” (meaning White) name, it was declared “too complicated” and I was issued a nickname Westerners deemed more palatable that I was required to answer to all of my school years. And it wasn’t only me. All of us who deviated from the “norm” were similarly renamed: Osama became Sam; Guadalupe became Lucy; Kasif became Casey; Marcos became Mark; DeShondra became Dee; Raheem became Ray. Whether we approved or not.
I remember one disastrous attempt, in elementary school, to assert myself. I raised my hand to interrupt a social studies “lesson” and provide clarification. The information that the teacher was providing to the class was not only untrue, but unbeknownst to her, it was a harmful stereotype. When called upon, as I had specialized knowledge on the topic, I gently but firmly countered what she’d shared with my own lesser-known but more accurate truth. Rather than consider my perspective, the teacher instantly took offense and decided to shut me down, sending me to the principal’s office for my “disrespectful” behavior. As far as she was concerned, it was impossible for me to be in the right; so the only thing that made sense was that I was causing trouble. She couldn’t fathom that what she was certain she knew was in fact wrong.
This is what happens over and over and over and over to my community. No matter what we do or don’t do, say or don’t say, others get to decide what we really think, what we really feel, what we really mean.
If we say, “Black lives matter,” they choose to interpret that as “No other lives in this world matter but Black lives; everyone else is irrelevant.” If we say, “This word/phrase is hurtful,” they choose to interpret that as “censorship.” There are no “shades of gray.” Nothing exists in their world but absolutes, and everyone that does not prescribe to their bigoted point of view is demonized and misportrayed. Fake news abounds, and the lies and mischaracterizations grow larger and larger. Eventually they convince those around them that the emperor is indeed wearing clothing, despite his stark nudity.
It’s one thing for people to disagree with one another. That’s part of life. Everyone is not going to feel and think the same as everyone else. However, it’s a completely different thing for people to blatantly exaggerate and lie on the other “side” to try to make themselves seem more appealing and righteous. If your argument was credible on its own, you wouldn’t need to resort to lies. You wouldn’t need to use inflammatory language and you wouldn’t need to deliberately and constantly misrepresent things to “win” your argument. The truth would be compelling enough on its own. But that isn’t the case, and therefore you continue to intentionally exaggerate, project, misquote, and mischaracterize those who refuse to parrot back your lies because that’s the only tactic you know.
There is not one shred of truth in the distorted, nonsensical piece of lies in the January 10th “article” Amy Lutz published in Psychology Today. Similarly, the “commentary” written by Alison Singer, Jill Escher, Amy Lutz, and Alycia Halladay published in Autism Research last month is full of misinformation and contains minimal truth and a whole lot of deceptive posturing. (I will not link to either article as I’m not going to give them the satisfaction of more reader views.) The amount of energy it requires to have to defend oneself against these frequent, blatant lies repeatedly takes away much needed time and attention that should be devoted to addressing the many unmet needs of people on the autism spectrum and their families. But maybe that’s the intention. Keep us all gaslit and occupied with “Whack a Mole” like tactics so that the real work never gets done, which will allow them to continue to beat their breasts and cry, “Woe is me.”
No matter how many times you shout a lie, how loud, and from how many media and research sources your wealth and privilege have allowed you to worm yourselves into, it will never make those lies the truth.
If your “position” was as sound as you claim, it would be convincing without the need to resort to these disgusting and dishonorable tactics. Every last one of you should be ashamed of yourselves.
Fortunately, there are people who are countering these falsehoods with fact-checked information as opposed to exaggerated innuendoes. I hope to share links to some of those efforts as I learn of them. For now, I will share a few below, and I hope that you will read and share them and fight back against these false claims of “censorship” and against the lies being told. No “neurodiversity advocates” are seeking to erase or stifle anyone. It is of extreme importance to ensure that those with multiple specialized needs and many challenges are given the attention, funding, services, research, etc. that is needed instead of continuing to be neglected and inadequately supported. It is of extreme importance to include a broad array of perspectives, including those of family members and caregivers, who often have an intimate level of understanding and expertise about their loved one(s) and can contribute much to the dialogue.
There’s room at the metaphorical table for many – but there isn’t room for bigotry, hatred, mischaracterization, generalizations, and dehumanization. All people deserve to be discussed, referenced, viewed, and treated with respect, and I will never condone harmful and hurtful rhetoric about any person regardless of their cognition or struggles. I don’t care if you’re supposedly their “family” or not; that doesn’t give you license to dehumanize anyone. You can share every single anectdote, picture, video, etc. that exists in the world of that person at their worst, in their most vulnerable and desperate of moments…you will still never convince me that justifies you denying them the common decency that should be given to all human beings.
Listen movie: https://www.youtube.com/watch?v=H7dca7U7GI8
Damon Kirsebom – “Reframe severe autism”: https://www.youtube.com/watch?v=CtK9paFGUjc
Article- “I have nonverbal autism; here’s what I want you to know”: https://researchautism.org/i-have-nonverbal-autism-heres-what-i-want-you-to-know/
Leo in Bloom – “Good practices for supporting nonspeaking autistic advocates:” https://leoinbloom.com/2022/05/04/some-good-practices-for-supporting-nonspeaking-autistic-advocates/
“First, Do No Harm” article about respectful language: https://publications.aap.org/pediatrics/article/149/Supplement%204/e2020049437N/185653/First-Do-No-Harm-Suggestions-Regarding-Respectful
Jordyn Zimmerman – “SLPs as gatekeepers:” https://communicationfirst.org/slps-as-aac-gatekeepers/
Niko Boskovic – “A case for paid family support workers:” https://www.spectrumlife.org/blog/navigating-with-niko-a-case-for-paid-parent-caregivers
Hari Srinivasan on autism representation in media: https://uniquelyhari.blogspot.com/2021/04/autistics-roundtable-webinar-on-media.html
Nonspeaking autistics against ABA: https://autisticstrategies.net/nonspeaking-autistics-against-aba/
Article – “Avoiding Ableist Language for Autism Researchers:” https://www.liebertpub.com/doi/10.1089/aut.2020.0014
Nonspeaking autistic valedictorian’s commencement speech: https://www.goodmorningamerica.com/living/story/nonspeaking-student-autism-moving-commencement-speech-84644347
Philip Reyes – “On Nighttime:” https://nottootrapped.wordpress.com/2020/04/27/nighttime-meeting/
Rhema Russell – “Something I want to say:” https://rhemashope.wordpress.com/2018/01/01/something-i-want-to-say/
Danny Whitty: “Our nonspeaking voices must be valued” https://firstname.lastname@example.org/listen-for-unspoken-voices-our-non-speaking-views-must-be-valued-b5535e9fb614
Article My nonspeaking brother learned to communicate, then a new world opened: https://www.deseret.com/2022/7/31/23177199/my-nonspeaking-autistic-brother-learned-to-communicate-then-a-new-world-opened
TGPA’s ode to nonspeaking members: https://thinkingautismguide.com/2022/03/an-ode-to-our-nonspeaking-community-members.html
Abstract – Including Speaking and Nonspeaking Voices in Research: https://www.liebertpub.com/doi/abs/10.1089/aut.2019.0002