“Some might call me cowardly, but speaking out against AS was not my objective in autism…”
By Keri Bowers
Note: I have never, ever written such a long blog before. If you bear with me, I think in the end you’ll understand all my words are worth speaking – at least for me…
Hello… My name is Tom
“Hello, Keri? Keri Bowers? My name is Tom. I‘m calling you at Chairman of NBC Universal’s Chairman of the Board, Bob Wright’s request.” Tom continued, “Mr. Wright asked me to call you to ask if we can get a copy of your film, Normal People Scare Me. He’s heard a lot about it.”
My son, Taylor and I had just released our documentary, Normal People Scare Me, to rave reviews. We had been getting a lot of international media attention, with our phone ringing off the hook. People wanted to book us for interviews, TV, and speaking gigs. People magazine wanted to feature us in its sensational glossy. But this? An opportunity to share our work with such a prestigious man and the new organization he and his wife had started the previous year?
As a collaborator in all things autism, I was sure this call would be the beginning of a wonderful opportunity. It wasn’t every day that I got a call from the (then) top of the pyramid at NBC. I was ecstatic.
Prior to making our film, I had been a small, cursory part of the Cure Autism Now (CAN) Foundation movement, which was comprised of parents, researchers and physicians working together to promote and provide funding for biomedical research towards finding effective treatments and a possible cure for autism and related disorders. At the time, the foundation was run by good-hearted people who cared deeply for people with autism and their families.
As for their efforts to research a cure, who knew then what we know now – that some kids – like my son would grow up to say “I worked hard to get to where I am… You want to ‘cure’ me?…” At the time, I very much liked the board of CAN and it’s new (then) director, Peter Bell, who himself had/has a son with autism. I trusted CAN’s good judgment to align with Autism Speaks. I would not have guessed then that CAN would be swallowed up whole and completely vanish from autism’s purview.
After I hung up with Tom, I didn’t pass go, and I didn’t collect $29.99 (the price of the film). Instead, I mailed out a gratis copy to Bob Wright at NBC Universal, c/o “Tom”.
After a week – when I didn’t get the call -which frankly, I expected – to… I dunno, talk about NPSM; to thank me; or simply to talk about our common interest in helping autism, I was admittedly disappointed. A follow-up call to Mr. Wright went unreturned. The next day, I figured out why.
The headlines read:
Documentary film Autism Every Day debuts at fundraiser: “A New Decade for Autism.”
When I watched – or agonized over watching – the “horror” film Autism Speaks called Autism Every Day, in addition to being mortified, I also realized I had been used. Mr. Wright had merely wanted to see the competition – and I presume to figure out what all the buzz was about our film. Seeing AS’ so-called documentary, I knew Bob and Suzanne Wright would sit secure in the knowledge that the fear of autism they had successfully portrayed and put into the minds of their public, business relations, and friends would very soon roll-in millions and millions of dollars to fund – drum roll please – “the cure”.
At that time, not many of my colleagues, friends or clients/parents knew much about Autism Speaks. It would take time for their true agenda to become globally transparent. We did not yet hear what the future would hold: Mrs. Wright calling people with autism defective. We did not yet know that in her heart she considered that families who have autistic children are “not living”, and that she would go on record saying things that would deeply hurt people with autism and their families.
BIG MONEY is slicker than that…
Instead, the Wright’s were keen fundraisers, appealing through fear to would-be donors and eventual “walkers” to bring in BIG money. POWERFUL money. It would not be until 2007 that I would begin to really understand the puzzling (pun intended) motives of Autism Speaks.
On June 18, 2007, a private battle between Katie Wright and her parents became public when The New York Times posted an article, “Autism Debate Strains a Family and Its Charity”. Apparently, father and daughter were not on speaking terms (at that time) over intense disputes of “themes familiar to thousands of families with autistic children” – namely the heated debate over vaccines and environmental toxins as reported by writers Jane Gross and Stephanie Strom.
“The Wrights’ daughter, Katie, the mother of Christian, says her parents have not given enough support to the people who believe, as she does, that the environment – specifically a synthetic mercury preservative in vaccines – is to blame.” Of course, at the time, the vaccine debate was growing to be more hotly debated than it had previously been. It was at that time I saw something very unusual.
If you blinked, you missed it…
The senior Wrights called their daughter out publicly on their AS website. “Katie Wright is not a spokesperson for the organization… Her personal views differ from ours…” They went on to say they loved their daughter, but the family feud was now not just public, but personally fueled on both sides. Over those days and weeks I watched the battle grow in the media – and then, just as abruptly as it started, the feud suddenly died. The Wrights’ statements were ripped from the website, and Autism Speaks wasn’t speaking much, if at all, on the topic of the family battle.
At the time, I noticed that AS was beginning to grow in its political power in Washington, and was beginning to make significant political headway. They were also merging with (read swallowing up whole), three existing autism organizations and raising millions of dollars for research under what the Wrights’ called a “big tent” approach. Gobble, gobble, gobble, gone…
Meeting the Queen…
In 2008, I would finally meet Suzanne Wright.. That year, my son and I along with 298 0ther delegates from all parts of the world, were hand-selected/invited to attend a first-class, major autism conference at the Shafallah Center for Children with Special Needs in Qatar (United Arab Emirates). Her majesty, Queen Rania was/is a very sincere benefactor of people in need and of Shafallah. This amazing invitation spared no expense.
An interesting side note: I loved, loved, loved flying first class with Taylor on Qatar Air – the best flight ever of the 25 countries I’ve visited. Sitting precisely next to my comfy pod, was Anthony Kennedy Shriver who was also attending the conference and appeared busy throughout the log flight; I did not interrupted to lean over and say hello. Instead, I quietly watched The Kennedy’s, a popular movie at the time, on the movie monitor. Sipping champagne and eating medium-rare filet could not have been a better mix with the irony of it all.
Once at Shafallah, I met Mrs. Wright, but before I did, I observed over the course of the 3-day event what I interpreted as a disconnection from autism itself, and instead, a purely vain agenda by Mrs. Wright. So far as I saw, she attended only the key luncheons and special events held for the various first-ladies from different nations in attendance – to which we, the few dozen invited speakers, were also invited to attend (most of them anyway). Of course she also attended Mr. Shriver’s key note presentation. She did not, however, attend Taylor’s presentation, nor any other session (I was at) presented by other persons with autism – at least I did not see her I scanned each audience for familiar faces. I can guarantee this though… she never stood in what I call the “thank the speaker” line – and she completely ignored Taylor (a key note speaker) throughout the entire conference.
After an event on the final evening, I stood in earshot – beside, if not slightly behind Mrs. Wright. I was intrigued when I heard her boldly announce to a man in front of her: “We (Autism Speaks) just became international! We are partnering with The Shafallah Center.” I couldn’t help but notice her excited tone, which understandably for such an accomplishment, was righteous and proud. For a second, I thought maybe this will help AS to turn a corner – an international alliance. But the second that thought came, it went. In the next moment I was dumb-struck-flabbergasted when she spoke again. Everything I had come to know about AS – and I mean everything – would now make sense to me.
“Oh, I see you are wearing my pin.”
Okay, okay, so I’m totally passing judgment at this point, so take it for what it’s worth, but Suzanne Wright’s statement might just as well have been “Oh, I see you are wearing my pain.”
In that very moment, Autism Speaks’ mission crystallized. AS was more about Suzanne Wright (and Bob?) than it was about autism. It was her pain, as cast upon her by the “child thief” called autism that haunted her; that grabbed her by her insides and would not let go. The “puzzle” of autism was her private pain; Suzanne Wright had never gotten over the death of her dream.
I wondered then, and I still wonder now if she had or has ever truly accepted her own grandson Christopher. Did she see him as a vibrant, wonderful, capable, and alive? Or did/does she see him as broken – a puzzle to be cured, wiping away parts of him that are intrinsically who he is?
“What now? Some might call me cowardly, but speaking out against AS was not my objective in autism…”
2009 was the first year I signed on to social media’s soon-to-explode-wildly Facebook. It was a point in my life when I was traveling with Taylor sometimes 2 weeks out of every month with our then 3 films. My passion for my work in autism was the most amazing and important thing to me- save my two sons. I was excited every time the phone rang or I opened my email. New possibilities, connections and experiences were waiting, and there was much work to be done; collaborations to be made; opportunities to fulfill upon.
Yet each time I spoke ill of or negatively about AS, or commented upon AS debates, I found myself sad, if not deflated. Those conversations/comments sucked the life out of my mission to be for The ART of AUTISM. In dabbling in the negativity of debates, I found pain. So I just stopped talking about and commenting upon AS (save occasional private conversations with a very close few when my secrets got too much to bear).
2009 would also be the year AS produced the intensely dark and ominous video I am Autism, wherein a deep-throated booming voice decries “Autism knows where you live.” and “Autism works faster than pediatric AIDS, cancer, and diabetes combined.” I had nightmares after watching it the first time.
But again, fear brings in millions and millions by donors and walkers (which walkers I say are mostly comprised of families with younger children, but I have no real evidence of this). This film too, like many other things about AS pierced my heart yet again. I remained silent still.
The ART of AUTISM; for whom the bell tolls, and even something nice to say…
In 2012, I attended The United Nations’ April 2nd, World Autism Awareness Day’s unveiling of a series of postage stamps by artists with autism. Four of the eight artist were “our” artists who were featured in the book The Art of Autism; Shifting Perceptions by Debra Hosseini (now Muzikar) and edited by myself, Debra’s husband Kurt, and Nancy Lea Speer. It was an exciting event that was followed by a special tour of The New York Stock Exchange. There, we were told Mrs. Wright’s grandson would ring the bell at opening time. How fun. Right? I was astonished to see the grandson to ring it would not be Christian, but instead, his brother, Mattias. Christian was nowhere to be seen. Ever the optimist I attempt to be, I reasoned there was likely a very good reason Christian wasn’t there to represent autism. I hope that was true anyway – yet it was one more opportunity for autism to speak, and it didn’t.
During that trip I also attended an AS event on the Intrepid, a naval ship museum perpetually docked in the Manhattan harbor. At the event – which actually had amazing speakers to which I gave rise with excited applause, I ran smack into Suzanne Wright. As I reached out to thank her for what were (some) very good works of AS (political, insurance, small grants – but grants nonetheless, etc.) which I could get behind and offer gratitude and thanks for her tireless work on behalf of Autism Speaks. Her efforts are, after all, agree or not, tireless works which in her mind are true and good.
“Hi Suzanne, I’m Keri. I don’t know if…”
“Oh yes,” she cut in, “I remember you.” Yet she said so not with the energy of kindness but rather with a hint of annoyance while smiling toward me looking over my shoulder for the next big fish in the room – a celebrity in attendance that day. She was speaking to me but not speaking with me at all. Sound familiar? I walked away wondering if perhaps my own energy belied me. Maybe it did, but my thanks did seem authentic to me at the time. I can thank someone for the good work they do while still disagreeing with their differing views at the same time, and I did try.
In the Spring and Summer the following year, I worked with a colleague to present an autistic artists 2 day weekend event to promote and advance movement and the arts. We also facilitated a separate Spring break camp for autistic kids and their typical siblings – each with the benefit of two respective $5,000 grants from Autism Speaks to the be non-profit I collaborated with. I even helped write the grants which were awarded the money. I was grateful for their support, and the programs were hugely, autsomely successful.
After that, I began to speak out a little bit in favor of some of the good AS was by then finally doing in the real world of autism. “Well, hey, maybe movement and transformation is happening. I know it is small, but it is something.” Yet each time I said so, except for a very small few, I would effectively get blasted for my AS comments. Still, I continued to speak up for AS, being a spiritual stand for them to “get it – the now what?” at a higher level of possibility.
On November 13, 2013, Jon Elder Robison resigned from his position on the Scientific board of AS. After many years of personal and professional attempts to influence from the inside out ASS’ (pun intended) culture of continuing to ignore actual people with autism (“Autism Speaks Does Not Speak for Me” type of backlash) and Mrs. Wright’s continued derogatory comments about the “defects” of autism, the hard core message she delivered in “Autism Speaks to Washington; A Call for Action a few days prior to Jon’s resignation, I again decided it was time for me to make one last comment and then shut up.
Jason, Klavir and Op Ed… L.A. Times
Over the past two years, I have had some other hair-raising issues come at me regarding AS from other people who have called me into question for not speaking up and speaking out. But you see, until now, I just wasn’t willing to dilute the importance of the work I do for the debate – that is until now.
Yesterday, I was meeting with a young man, Jason Klavir, who is doing animation for our film Normal People Scare Me Too which is currently in production. He confided in me, an idea for a non-profit start-up which is actually a very cool-never-been done idea. When he shared his desire to help other young adults like him with autism, and suggested Autism Speaks as a possible recipient of the money he wanted to raise – I had to hold back from saying “NO! Don’t do it.” Instead I asked him to ask his mom about her ideas of ASS’ mission and values. I know she agrees that they deplete community resources away from other non-profits who are dealing with the “what nows” of services.
When I arrived home, and read the Op. Ed. piece by Steve Silberman in the L.A. Times, still with the taste of Jason’s idea of AS is its branding and not its disdain for his defectiveness, I knew it was my time to speak up and speak out. After nearly 10 years of relative silence, this is my diatribetic (can I make up that word?) story. This is my truth, and my stand for you still Autism Speaks that one day you get it.
Perhaps it will be Christian who helps you get there when he might say, as my son did to me: Grandma… Grandpa…
“You mean I worked so hard to get to where I am and I am not enough? You want to “cure” me? I do not want to be cured. Maybe save that for those who really want or need it – but me? I am just fine.”
Thank you Taylor Park Cross, I will never forget when you said those words to me years ago about Autism Speaks. And I will always love you as you are, bright, quirky, odd, talented, forever my muse, my inspiration, and my grace. Thank you for being the light and for being my son. I love you with gratitude, autism and all, love, mom – xoxox
Keri Bowers is the co-founder of the Art of Autism collaborative, a film producer, speaker, writer, and mom to Taylor and Jace.