This week on Neurodiversity News, I’ve interviewed Eve Reiland, who has firsthand experience fighting the infamous organization, Autism Speaks. Like the name of the website she created, Eve really does embody the title of Badass Activist.
Neurodiversity News: Tell me about yourself and what you do.
Eve Reiland: I’m an autistic activist, writer, and artist. I also aspire to be a documentary filmmaker focused on autistic history and people. I’m also the founder of International Badass Activists and a co-founder of The Autistic Cooperative.
Before becoming disabled with PTSD and Functional Neurological Disorder in 2010, I was an online developer and geek, nationally syndicated writer with McClatchy Newspapers, and also had my work seen on parenting sites like Babycenter.com and Momlogic.com. My first published piece was in Adoptive Families Magazine in 2005.
I’m a mom to autistic and non-autistic kids too. My oldest son Jared, now 27, married an autistic woman a couple of years ago. My younger two are 16 and 11 now. The baby of the family is the one non-autistic in our bunch. I also have another son that joined our family as an adult. He’s 27 now and autistic too.
I’m also a wife. I married my best friend and love, Bill Reiland, in 2017. He’s not autistic and hadn’t experienced Autistic culture or knowingly knew any Autistic adults before me. How we met, fell in love and worked through culture shock is a story all on its own.
NN: What would you say are your greatest achievements as an activist?
ER: My greatest achievement as an activist is raising my children to be self-advocates. My kids are proud of their heritage and know they are worthy of a good life and are valued members of our community.
My oldest, Jared, has given his consent for me to share about his life while raising him and his fight against suicide ideation since he was 7 years old. His goal is to help other autistics to know they’re not alone and help create a better future, and less trauma growing up, for autistics born today.
I’ve been working on a collection of emails, exchanges and journal entries and more from that era at https://theghostbeneathme.wordpress.com/. It’s a bit complicated, and slow going piecing it all together with my amnesia weirdness due to FND.
My next is being a co-founder of The Autistic Cooperative. I met founders John Greally, Kieran Rose and Emma Dalmayne online and had the same advocacy goals and worked together really well — and together with thousands of other autistic activists and allies, we fight eugenics, toxic cures, misinformation and abuse. We are fighting for representation in legislation and to halt the commodification of our people by charlatans, propagandists, big business, and snake oil salespeople.
It’s time for these autism charities that are really fronts for anti-vaxxers, like Generation Rescue, to be shut down.
NN: Could you tell me about your personal experience with Autism Speaks?
ER: My oldest son was diagnosed as autistic in 2005, and like many parents, I found out I was autistic then too. Fortunately, I had a very good divergent doctor who helped me understand how
I could get my son help in school with an IEP. He also shared a bit of autistic history too – and how the divergent mind is wired differently and can sustain intense focus and invent things like computers and more.
The first time I heard about Autism Speaks was probably a few months after the official diagnosis. I said, “oh good, here’s a community of people like us.” Though, at the time, the marketing was really confusing. I didn’t understand the tragedy narrative at all, and I wasn’t sure what they were trying to cure. It was explained to me by other parents there were many kinds of autism. Well, obviously, we had a different kind of autism than what they were talking about. None of their material was relatable and the one event we did sign up for — hoping to meet other families like us — was nothing like we expected. It was packed full of people, massive amounts of noise, everything loud and just… wow. We watched for about five minutes from the car and then said, “nope” and went home. It was just too much sensory overload to manage for either of us.
So from the get-go, Autism Speaks confused me. The parents of autistics weren’t like us, and the challenges we were seeking support for simply didn’t exist and I was really disheartened to realize that I wasn’t going to fit in with their parent groups either. The only information they really sent out was to support them, do the walk and get donations and seek support to get votes for their insurance reforms. At that time, I had no idea what they were talking about and felt like none if it pertained to myself or my family.
Except for the doomsday billboards that went up on every street corner with the latest autism prevalence in boys… Autism Speaks wasn’t something I thought much about until they hit my radar again in about 2008 during their April awareness month.
NN: What happened in 2008?
ER: Oh goodness. In 2008, I ran my first autism campaign. And this is the piece I wrote back at the same time Jenny McCarthy was greening vaccines.
NN: Would you be able to elaborate on your time in the news on ABC10 when Lilia Luciano interviewed you? That video was great.
ER: Connecting with Lilia Luciano was an incredible experience, and one I wouldn’t have braved without the support of my social worker at the independent living center. She’d been helping me navigate applications for benefits and services since 2011 and knew me before I was able to speak more than two words together, and my memory didn’t stick from minute to minute. At that time, I had been nicknamed Fifty First Dates by some loved ones due to my inability to remember one moment to the next. During that era, I could meet someone for the first time six, ten, even 20 times and still not remember them the next time. I had the same issue with movies and TV shows and giant chunks of my life. New experiences weren’t being recorded to my memory banks or weren’t accessible to me if they did exist.
Without that support, I’d never have braved sharing my story and experienced how it helped others understand better and break institutionalized stigma. To know I had a voice that was valuable was empowering. After that, I took every opportunity I could at NAMI Fresno to learn more about living with mental illness and advocacy. In 2014, I started writing and blogging again and also created my first advocacy video.
Some months later, I started my first campaign against an energy drink company in California named 51 Fifty Energy Drink called #TheReal5150. The 5150 code is used in California for people who are a danger to themselves, others or gravely disabled. This is a crisis moment and not a lifestyle choice that means edgy and cool.
During the campaign, local supporters of the drink slammed me for harming autistic kids. The drink company was a supporter of Autism Speaks, donated a percentage of each can sold, and had a race car done up with puzzle pieces to help create a buzz over their philanthropy.
The autism information these people shared with me left me in shock. Just utter shock. Not a single supporter of that company had any clue about autism. Everything they spouted was a mistruth, a lie, or a fairytale. At first, I thought it was a local, Central Valley California thing. So I went to seek accurate information to share with these people and discovered that Autism Speaks had overtaken the entire world. What I read made me feel like I was in an Alfred Hitchcock horror film.
It was at that point, I realized there was a far larger problem than this one company. I could either remain focused on that campaign or accept the lip service solution the owner was touting (and shouting we’re on the same team now) in a video. My energy and pace is slower and slower these days – so I switched my focus to Autism Speaks, and autistic civil and human rights. Every day, I woke up determined to do what I could.
Online, I found the work of Autistic Self Advocacy Network, Autistic Women & Nonbinary Network and the #RedInstead campaign. I created the American Badass Advocates website in my earlier campaign and did my best to help amplify autistic voices on my networks. During that time, I was also digging into the history of Autism Speaks and became even more angry at their tactics to silence autistic people.
I created a very rough movie using clips of autistic people’s videos and views on Autism Speaks to show that autistics aren’t a disease; we are a minority group and this is a civil rights movement. I wrote an email that included the video “Autistics Against Autism Speaks” and some history to every news and media outlet I could email. I sent hundreds of emails all over the United States.
Lilia Luciano from ABC 10 in Sacramento responded. She wanted to know more and realized, yes, this really is a civil rights movement. My husband and I went to San Francisco and met up for the first interview. Afterwards, I reached out to autistics in my family and community and we gathered in my home for the second interview.
The experience was incredible. Every autistic there that day felt their voice mattered. For a few, it was the first time advocating openly about their lived experience. My oldest son and his then fiancé were here as well. I felt tremendous pride hearing him share his lived experiences with the other advocates.
NN: What do you hope to accomplish for the future?
ER: I want all autistics to have a better quality of life in the future. We are a people, not a disease.
Links:
https://internationalbadassactivists.org
https://www.facebook.com/TheAutisticCooperative/