Dear Iron Chefs Symon, Batali and Morimoto,
I would like to ask you to consider expanding your charity work in support of Autistic people to include organizations other than Autism Speaks. I’m writing this as an Autistic adult, and Mother of an Autistic twelve year old boy, who has big dreams of one day becoming a chef. My Son Connor is homeschooled, and upon completing his work each day, checks in to see how many episodes of Iron Chef America, Chopped, Cutthroat Kitchen, and other favorites have recorded. In short, he looks up to all of you. He’s been very inspired by all of you. He talks about one day meeting an Iron Chef, or being able to enjoy one of your dishes. Your words mean something to him. He cooks or bakes several times a week, dreams of one day going to culinary school, and wants a Kitchen Aid mixer for Christmas this year. My boy is serious, and I support him 100% in following his dreams, despite his challenges.
Yesterday, we were watching the Iron Chef Chopped Championship together, when Connor paused the recording, and called me over to listen. “Mom, Iron Chef Michael Symon is going to give $50,000 to Autism Speaks if he wins! Doesn’t he know about how many ways they are not a good place to give your money?” I replied, “I don’t know. I’ll do some research to find out more”. I did find out more, (Here, especially – the Cleveland Autism Speaks Chef’s Gala featuring Iron Chefs Michael Symon and Mario Batali, hosted by Wolfgang Puck and featuring 20 prominent Cleveland Chefs**) and that’s why I’m writing this letter and begging you to listen to me, an Autistic adult, as well as the voices of numerous other Autistic people and Autism Advocacy Organizations who have taken a powerful stance against Autism Speaks.
I understand that you may chose to donate to Autism Speaks for personal reasons, such as Chef Symon having a friend with two Autistic children. However, I would like you to consider that there are better organizations out there to support. I hope that in reading this letter, you’ll allow me to inform you about why that is. I am one of the Autistic people whom you claim to wish to support, so I feel that it’s important that you listen to what I have to say, as well as consider how my Son felt when I told him that three of his favorite Iron Chefs support an organization that has no Autistic representation, and puts the majority of their monies into research initiatives that involve both eugenics and drastic and controversial therapies.
Through my research I discovered that your colleague, Chef Simon Majumdar has supported the National Autistic Society through his work. Majumdar also recently shared the following tweet: · We have so, I think we should also have my first shout outs go and both great causes AND, he retweeted the following tweet, in a show of support: · Thank you for supporting Autistic people. and can use your support !! Many of us in the Autism community took notice of this and thanked Majumdar and retweeted his supportive words. Unfortunately, my attempts to let Chefs Symon, Batali and Morimoto about myself and my Son’s disappointment in their support of Autism Speaks went mostly unheard. Chefs Morimoto and Symon ignored my tweet, and Chef Batali wrote the following, then ignored my polite replies:
As celebrity chefs, you all have great influence and a far reach. Please consider using your star power, talent and influence to positive use by considering some of the many amazing alternatives to Autism Speaks.
I’d like to begin by sharing with you some key points from a letter published on January 6, 2014 by the Autism Self Advocacy Network. This letter contains some of the most compelling reasons that anyone who wants to support Autistic people shouldn’t choose to give Autism Speaks that support. The letter, entitled “2014 Joint Letter to the Sponsors of Autism Speaks” (found in full HERE) was jointly drafted by 26 established Autism Advocacy Organizations.
Autism Speaks has no Autistic representation within their organization:
“Autism Speaks’ senior leadership fails to include a single autistic person. Unlike non-profits focused on intellectual disability, Down Syndrome, Cerebral Palsy and countless other disabilities, Autism Speaks systematically excludes autistic adults from its board of directors, leadership team and other positions of senior leadership. This exclusion has been the subject of numerous discussions with and eventually protests against Autism Speaks, yet the organization persists in its refusal to allow those it purports to serve into positions of meaningful authority within its ranks. The slogan of the disability rights movement has long been, “Nothing About Us, Without Us.” Almost nine years after its founding, Autism Speaks continues to refuse to abide by this basic tenet of the mainstream disability community.”(source)
Autism Speaks has a history of supporting dangerous fringe movements that threaten the lives and safety of both the autism community and the general public.
“The anti-vaccine sentiments of Autism Speaks’ founders have been well documented in the mainstream media. Several of Autism Speaks’ senior leaders have resigned or been fired after founders Bob and Suzanne Wright overruled Autism Speaks’ scientific leadership in order to advance the discredited idea that autism is the result of vaccinations. Furthermore, Autism Speaks has promoted the Judge Rotenberg Center, a Massachusetts facility underDepartment of Justice and FDA investigation for the use of painful electric shock against its students. The Judge Rotenberg Center’s methods have been deemed torture by the United Nations Special Rapporteur on Torture (p. 84) and are currently the subject of efforts by the Massachusetts state government and disability rights advocates to shut the facility down. Despite this, Autism Speaks has allowed the Judge Rotenberg Center to recruit new admissions from families seeking resources at their fundraising walks.”(source)
Autism Speaks’ fundraising efforts pull money away from local communities, returning very little funds for the critical investments in services and supports needed by autistic people and our families.
“Only 3% of funds donated to Autism Speaks are reinvested in services and supports for autistic people and our families. Across the country, local communities have complained that at a time when state budget cutbacks are making investment in local disability services all the more critical, Autism Speaks fundraisers take money away from needed services in their community. In addition, while the majority of Autism Speaks’ funding goes towards research dollars, few of those dollars have gone to the areas of most concern to autistic people and our families–services and supports, particularly for autistics reaching adulthood and aging out of the school system. According to the Department of Health and Human Services’ Inter-Agency Autism Coordinating Committee, only 1% of Autism Speaks’ research budget goes towards research on service quality and less than one-quarter of 1% goes towards research on the needs of autistic adults.” (source)
Autism Speaks’ advertising depends on offensive and outdated rhetoric of fear and pity, presenting the lives of autistic people as tragic burdens on our families and society.
“In its advertising, Autism Speaks has compared being autistic to being kidnapped, dying of a natural disaster, having a fatal disease, and countless other inappropriate analogies. In one of its most prominent fundraising videos, an Autism Speaks executive stated that she had considered placing her child in the car and driving off the George Washington Bridge, going on to say that she did not do so only because she had a normal child as well. Autism Speaks advertisements have cited inaccurate statistics on elevated divorce rates for parents of autistic children and many other falsehoods designed to present the lives of autistic children and adults as little more than tragedies.” (source)
Sponsors of Autism Speaks are beginning to listen to the voices of Autistic adults, such as myself- by severing their sponsorships and arrangements with Autism Speaks. Most recently, both Build-a-Bear Workshop and Panera Bread dissolved their sponsorships. Why did they do it? Because they listened to Autistic voices and realized that what we were saying was valid. They respected the fact that when Autistic people are speaking in outrage about an organization supposedly positioned to help them- that something must be very wrong with that organization. They understand that the anti-vaccine stance found in many of Autism Speaks “treatments” is both dangerous and cavalier. Autism Speaks has been criticized for years due to it’s use of dehumanizing rhetoric about Autistic people, its pithy spending on direct services for Autistic people, its exorbitant executive salaries (Its rates of executive pay are the highest in the autism world: some salaries exceed $400,000 a year.), and its refusal to include Autistic people in meaningful leadership positions within the organization. (source: Boycott Autism Speaks)
You might argue and tell me and others like me, “BUT, AUTISM SPEAKS DONATES 34% TO RESEARCH INITIATIVES!” Let me tell you something… research does nothing to provide immediate help and assistance to Autistic people in the present moment. Only 4% of the money Autism Speaks raises goes directly to Autistic families and supports! Autism Speaks can fund all of the research in the universe, but that doesn’t support real-life families in real-life situations, in need of real-life supports. Autism Speaks donates only one quarter of one percent of their monies to provide support to Autistic adults. What happens when Autistic children grow up and become adults? What services does Autism Speaks provide to transition them, support them and provide accommodations for them? A fraction of a minuscule percent of next to nothing, that’s what. And furthermore, Autism Speaks essentially believes that Autistic adults such as myself don’t exist. That after a certain chronological age is reached, we all go “poof” at midnight, or turn into pumpkins. We do exist, and we’re the experts on Autistic experience, NOT a group of grossly overpaid Autism Speaks executives pocketing $400,000 a year salary each out of the donations of the brainwashed masses.
Autistic adults are speaking out in droves against the actions of Autism Speaks. We want to be heard! We deserve representation by those who claim to want to support us. Here are some of the wise words of my adult Autistic friend Amy Sequenzia, a non-speaking autistic self-advocate, poet and writer, whose writing and poems are regularly featured on Autism Women’s Network and Ollibean.
“If organizations like Autism Speaks were really thinking about us, they would stop spreading fear of autism and they would start talking to us, the only true experts on autism. They would then help us achieve the goal to cure what really needs to be cured: the false assumptions of what life as an autistic person is, what life with an autistic person is.” -Amy Sequenzia (source)
I tell you with earnest that should you choose to discontinue supporting Autism Speaks, you’ll be showing that you truly care about Autistic people of all ages, colors, voices and disabilities- not just those whom Autism Speaks deems appropriate. Autism has been primarily positioned as a “disease” affected white, upper/middle class boys. This is erroneous, as Autism can be found in people as varied as the Autism Spectrum itself. Autistic adults and women also represent a hugely forgotten demographic of Autistic people in dire need to supports and assistance.. As an Autistic mother of an Autistic child, you will certainly have my greatest respect, and you’ll also make one of your Autistic fans overjoyed.
Cristiana Calderan and Connor
Please consider future charity work benefitting Autistic people to include organizations such as:
Autistic Self-Advocacy Network (ASAN) provides support, community, and public policy advocacy, by and for people on the autism spectrum.
Autism Women’s Network provides effective supports to Autistic women and girls of all ages through a sense of community, advocacy and resources.
20 prominent Cleveland area chefs who participated in the Cleveland Autism Speaks Chef’s Gala with Iron Chefs Michael Symon and Mario Batali:
- Tim Bando – Grove Hill (Chagrin Falls)
– Jonathan Bennett – Moxie (Beachwood) and Red (Cleveland, Beachwood)
– Derek Clayton – Michael Symon Restaurants (Cleveland)
– Britt-Marie Horrocks Culey – Coquette Patisserie (Cleveland)
– Brian Doyle – Sow Food & Beachland Ballroom (Cleveland)
– Brandt Evans – Pura Vida (Cleveland) and Blue Canyon (Twinsburg)
– Anna Harouvis – Anna in the Raw (Cleveland)
– Chris Hodgson – Hodges, Cibreo, Driftwood Catering, Bin 216 (Cleveland)
– Jeff Jarrett – AMP 150 (Cleveland)
– Douglas Katz – Fire Food & Drink, Provenance (Cleveland) and Katz Club Diner (Cleveland Heights)
-Tim Monsman – Giant Eagle Market District stores (various locations)
- Matt Mytro – Flour (Moreland Hills)
– Fabio Salerno – Lago and Gusto (Cleveland)
– Jonathon Sawyer – Greenhouse Tavern, NoodleCat and Trentina (Cleveland)
– John Selick – University Hospitals Ahuja Medical Center (Beachwood)
– Karen Small – Flying Fig (Cleveland)
– Dion Tsevdos – Cheese Shop, Urban Herbs, & Classic Seafood at West Side Market (Cleveland)
– Jill Vedaa – Rockefellers (Cleveland Heights)
– Rocco Whalen – Farenheit, Rosie & Rocco’s, Rocco’s Tacos (Cleveland)
– Eric Williams – Momocho (Cleveland) and El Carcinero (Lakewood).