Leaving the Matrix (2021)
I was recently part of a coalition that issued an Open Letter (penned by Cal Montgomery and I) and a follow up Memo (which had several co-authors, including many who opted to remain anonymous). The purpose of the Open Letter and the Memo was to make positive changes within the autistic community (and in this instance, specifically within the Autistic Self Advocacy Network (ASAN), which is one of the oldest and largest autistic-led advocacy organization in the world that is still operating. For various reasons, both the Open Letter and the Memo generated significant controversy.
Several things have transpired in this period of slightly over three weeks when all of this occurred. Assumptions have been made, as well as mistakes. I have publicly acknowledged and apologized for my missteps in this situation, but what’s done is done. I can’t change any of the events for better or for worse; I can only face the aftermath.
I’m writing this blog post as an update to this situation with regard to my involvement in continuing to advocate for greater inclusion of autistic people of color and autistic people with intellectual disabilities (ID) within ASAN…and/or within the autistic community at large. This is very similar to a posted update I shared on social media earlier today (which is the 25th of June, 2021):
I would like to share that as of June 25th, 2021, I’m entrusting this situation to your capable hands, autistic community. I still believe that the six demands [that were issued to ASAN] should be implemented, but I’m through with this.
And, frankly, in general I am through with y’all.
Meaning, respectfully, I’m (metaphorically) turning in my #ActuallyAutistic “card.” I’m realize that I’m still (obviously) an autistic person (#bornthisway, after all). However, the mere fact that I share a diagnosis with someone or several someones doesn’t make them my “community.”
Truthfully, this hasn’t felt like a community to me in a long time now, but I just couldn’t put down the “hopium” pipe.
When I first self-dx and then subsequently got the clinical dx, so many things seemed to make sense to me. For the first time in my life, I sought to truly embrace myself (all of myself). And, naively, I immersed myself deeply in the autistic community. I just KNEW I had found my “people” – at long last. I was so hopeful and so energetic that together we were all going to change the world, make it a more accepting and inclusive place. I actually believed that.
I don’t now.
I have been burned over and over again. Sometimes directly – things being done to harm me. Sometimes indirectly, in the millions of little micro aggressions and bigoted words and actions. Either way, it’s too frequent and it’s too much.
I should have never endured it in the first place, but I thought that collectively, we were worth it. I could take one, or ten, or twenty, for the team. We were all striving for the same thing, after all, right? I could handle some pain.
I don’t think that way any longer.
I’m not planning to “ghost” y’all (although several people have already done that to me; it’s all good). I will still be “here.” But in name only.
I have decided that since there’s only a limited amount of time and energy and “spoons” allotted to one human being, I am going to try to channel my attention and my efforts toward disability, educational, neurodiversity, and research endeavors focused on those who are most underrepresented, and particularly people of color. I might still do autism related work as well, but only if I can perceive that there will be a clear gain for my people.
I’m not doing anything for “all” of us anymore – there is no “us.”
There never was; I just believed the Wizard behind the curtain was real.
No more “trickle down” stuff. It there isn’t an intentional focus on MY community, people of color, then it’s not for me.
There’s a million people out there doing “autism” and “autistic” advocacy. Meanwhile people who look like me and my children are at best, an afterthought, and at worst, merely pawns or tokens.
There’s no way to win this game, so I’ve decided not to play anymore.
Be blessed. Hit me up on Twitter if you need me.
Autobots, roll out.
Recommended citation: Giwa Onaiwu, Morénike. (2021). Leaving the Matrix. Just Being Me...Who Needs "Normalcy," Anyway? [Personal essay.]