Just some thoughts … In 2014, I considered myself an advocate. My goal was to help break stigma of living with a severe mental illness, support peer projects and goals that helped bring support, services and a better quality of care and life here in Fresno, California.
And sometime in 2015, I instantly became an activist. I didn’t realize the difference at the time. No, at the time I was flipping off a delivery truck driver from the crosswalk. Pissed off would be an understatement.
After surviving and learning to live again with PTSD and Functional Neurological Disorder, to see an beverage company name it’s product 51-Fifty Energy Drink “Live The Madness” was just WTF. What the hell did these people think “Live The Madness” meant?
The reality of their slogan and name is a horrific existence and not one to mock, recreate and redefine to sell a product. My anger was noted, my attempts at contacting to help educate went unheeded for sometime.
So I campaigned. Pressure built, a conversation between us (in person) was scheduled … the owner was gaslighting, huge ego, and wanted to tell me his story, win me over and move on his way.
Zero fucks for the folks living an actual madness were given. I felt due to my inability to speak without stuttering and so on, the owner dismissed me — even in the conversation. Spoke to me as if I didn’t understand him like the others … almost like I was a child and needed a pat on the head.
Was promised that he would take the California code 5150 definition off his cans … and a year later that hadn’t happened – so 2016 I campaigned again.
This time the world heard. The story broke national news, and was even on news sites in Ireland and the UK. The pressure proved to be too much, so the owner decided to “join the team” — and created a mud run to raise money for helping those with mental illness.
Total lip service of course — and I recognized it at the time, and I accepted it. I backed off the campaign and walked away … and I believe many folks pondered why …
Here’s why – this company also prides itself on raising money for autism awareness, puzzle pieces on the car, on the can and writing out checks to Autism Speaks.
During the campaign, I was being set on fire for hurting this company that helped so many autistic kids. Then the ‘knowledge’ of autism by these folks was made apparent and I could’t believe what the fuck I was reading.
What fantasy world of autism did these people come from? At first I thought the phenomenon was local, and then I did some reading and realize, oh the fuck no — Autism Speaks took over the world while I was ill and living in a coma-like state after becoming disabled.
To read what folks were saying about autistic people, autistic kids and their raising all this money and donating it to Autism Speaks … and I’m the asshole?!
Finally, I outed myself – came out of the closet as Autistic. I thought perhaps if they heard from a real autistic … but no. No. Of course, I walked into I”m not autistic, not autistic enough, blah blah blah — I realized there was a far stronger monster out there and they controlled everything to do with autistic lives — Autism Speaks.
And they lied. I recovered in a world where everyone wants to know about the “secret world of autism” and they’re only showing the one they created … they decided how to portray autistic people to the world … and in their own image.
Fuck that. Let this owner have his lip service … I had much bigger yams to fry.
And then I found the #RedInstead campaign, ASAN, Autistic Women’s Network and #BoycottAutismSpeaks website, learned as much as I could about the past, the present and what autistics were doing. Then in the spirit of self-advocacy launched americanbadassadvocates.org.
Peer-led activism … for divergent minds. And here we are.
Damn middle finger — gets me into trouble eh?
P.S. Jenny McCarthy stated she was on a mission from God about vaccines and autism. Bitch, I came back from the dead to tell you, no. Sit the fuck down. Let Autistics talk.
Eve Reiland (US)
- So “Autism Awareness” month by non-Autistics is almost here. | Eve Reiland
- It took a decade, but finally some pain relief with Functional Neurological Disorder | Life 2.0 | Eve Reiland
- Help Autistics Protest The Anti-vaxxer #Bleachcult Conference in Chicago This May | #ProtestAutismOne2020