Thread by @MorenikeGO

It has never been my desire to be someone who constantly has to call people/orgs out. Because believe me, I am far, far from perfect. But sometimes you try to work from within & folx tell you to STFU…leaving you no choice. A thread, & I’ma need serious signal boosting, please./1

Again, I TRIED to resolve this w/the individuals & the orgs most centrally involved. But that just resulted in me being gaslighted by @FamilyVoices & accused of “vilifying” others when all I wanted was equity for #ActuallyAutistic #Black parents/self-advocates./2

Recently, @FamilyVoices was awarded a $250,000 @PCORI grant designed to build capacity in the Black #autism community w/regard to engaging in research. Which is VERY much needed. Yay. Or so I thought…/3

They reached out to me asking if I would join a stakeholder group. I politely asked questions trying to obtain clarity about the grant. I received vague, obtuse answers ~3 days later. While waiting, I did some research of my own & reviewed the @PCORI project summary online. /4

Upon doing so, it appeared that this $250,000 grant to engage the Black autism community…contained ZERO #Black #ActuallyAutistic people in the leadership. @FamilyVoices listed its leadership ~3 non-autistic Black autism parents & 2 non-autistic researchers, 1 Black, 1 White. /5

I was certain this was an unintentional oversight, & pointed this out to Allysa Ware of @FamilyVoices, the project lead, along w/some additional questions. I was told that they had not submitted any Black autistic staff among the grant leadership & now it was too late./6

I sent her several links that I found on the @PCORI website indicating that new grantees COULD request to make personnel changes. I explained that the voices of non-autistic Black families AND autistic Black families were needed. That this was exclusion. /7

I was told it was NOT exclusion. After all, there would be 2 Black autistic people in the 10 person stakeholder group. So 2 out of 16 (stakeholder group, project leads, & collaborators) would be autistic. 12.5% autistic; 87.5% non-autistic. With, again, ZERO autistic leaders. /8

I was told to essentially stop asking questions & either agree to join or go away. (Not in those exact words, but that was the clear message.) Emotional, I declined & then reached out to @FamilyVoices & @PCORI as well as other DEI+A leaders w/these concerns./9

The @FamilyVoices project lead Allysa Ware, Executive Director Nora Wells, & Board Vice Chair viciously shut me down, & said NO Black Autistic voices were needed in the leadership & the grant isn’t about “self-advocates.” Cuz it’s not like Autistic people can have families./10

I am grateful that I was openly supported by several colleagues, including @WeAreAutastic @awnnetwork_ @NeuroClastic @ColorofAutism @diaryofamom @FDMorg who urged this @PCORI team to rectify this. Their thoughtful feedback was unfairly twisted as “attacks” on @FamilyVoices. /11

NO ONE was cruel or abusive to Allysa Ware nor @FamilyVoices. Perhaps we weren’t as tactful as they would have liked…but autism IS a communication disability. Plus I REPEATEDLY apologized if my point was coming across harshly. But they choice to cry abled tears & gaslight us./12

The project continues w/ZERO BLACK AUTISTICS in its leadership. @PCORI never replied on the thread to express whether they approve of this lack of representation or not. But @FamilyVoices made it clear that this was intentional & they’re not changing a thing nor apologizing. /13

Respectfully, @PCORI is federally funded. That’s MY d@mn $ being used to pay @FamilyVoices to exclude & disrespect me & my people. Many #ActuallyAutistic people live in poverty while non-Autistics get grants & build their whole d@mn careers ON OUR BACKS WHILE EXCLUDING US. /14

I have NO desire to work w/@FamilyVoices after how they have treated me for the “crime” of advocating for equitable representation. But I CANNOT just be ok w/this grant proceeding w/ZERO autistics but the 2 lone tokens out of the 16 member full group. HIRE SOMEONE AUTISTIC./15

You are NOT OUR VOICE. /16

And I have receipts for EVERYTHING I’m saying. I don’t have to try to misconstrue what really happened. Check it out for yourself; screenshots don’t lie. drive.google.com/drive/folders/… /17

Quotes don’t lie either: docs.google.com/document/d/1pj… /18

If you care at all about #NothingAboutUsWithoutUs being more than a cute slogan, then I need your help. Please let @FamilyVoices & @PCORI know this is NOT okay. Family Voices Executive Director Nora Wells: [e-mail] PCORI Engagement Award Team: [e-mail] /19

We deserve better than to be disregarded & dismissed. I’m tired of being treated like I’m nothing but Black disabled trash. Tired of trying to build bridges for people who would prefer to stomp all over me. My community is worth something, even if the world thinks otherwise. /end

@AutSciPerson @AnnMemmott @AIMautistic @Autistica @AutisticTyping @AsiatuCoach @AutisticPOC @BlackAutistics @roryreckons @Mis_TAught @AutisticMama @FidgetsAndFries @notanautismmom @Imani_Barbarin

.@BU_Tweets, you are a collaborator on this project that has ZERO Black Autistic leadership. Are y’all okay with this?

.@UnivOfKansas you are a project collaborator on this grant that has ZERO Black Autistic leadership. Are y’all okay with that?