Autism Speaks - the sound and the fury
Autism Speaks founder Suzanne Wright appealed for clips of autistic children to be used in a new promotional video, “I am autism” that would “shine a bright light on autism.” And if you watch the video with the sound turned off it does shine a bright light. (Thanks to Terrie on LBRB for this idea.)The first half of the video shows footage of children and young people on their own. In the second half they are joined by their families. It is a positive film of children enjoying their favourite places and then sharing their enjoyment with their families.
When I watched it with the sound on I started to get the fury. My thanks to Cody for transcribing the whole thing. All quotes are from Cody’s Live Journal.
man: I am autism. I’m visible in your children, but if I can help it, I am invisible to you until it’s too late. I know where you live, and guess what? I live there too. I hover around all of you. I know no color barrier, no religion, no morality, no currency. I speak your language fluently, and with every voice I take away, I acquire yet another language.
So autism is a hidden threat that is all around us and it is after our children. We have been here before with the infamous “Ransom notes” campaign at NYU. at the time I wrote
The NAS made a similar mistake a few years ago. They accepted a pro bono offer from an advertising agency. Fotunately the resulting campaign was baffling rather than insulting and exploitative. Now they consult with autistic people before launching campaigns about them. Perhaps NYU should follow their example.
There is little danger of Autism Speaks consulting with autistic people. they have still to appoint a single autistic person to their senior management team or board of directors.
Back to the transcript.
I work very quickly. I work faster than pediatric AIDS, cancer, and diabetes combined. And if you are happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain.
Work faster? It sounds like autism is more damaging to the individual than AIDS, cancer and diabetes combined. I know this is supposed to be a poem but that is taking poetic licence too far. My guess is that it is a reference to the fact that the prevalence of autism is greater than the prevalence of those three conditions combined. But mentioning autism in the same breath as life threatening diseases is a tired device. It is meant to scare you but it has become so clichéd it is losing its power.
Marriage failure? If your marriage is weak having a disabled child will expose the weakness in your marriage. Heck, just having a child sends some men running. But I have yet to see any reliable evidence that marriage break up is greater in couples with an autistic child than it is for any other disability.
“Your money will fall into my hands!” I never knew I had an irony meter until this comment exploded it. Quack cures and treatments are what impoverish autism parents. and if you go around telling parents that autism is worse than AIDS or cancer you are the one lining them up for the snake oil merchants.
I don’t sleep, so I make sure you don’t either. I will make it virtually impossible for your family to easily attend a temple, a birthday party, a public park, without a struggle, without embarrassment, without pain.
Yet all the kids in the video are shown enjoying public places with their families. And have you noticed that there has been no mention so far of what it is really like to be autistic? This is all about what autism will do to you, the families of autistic people. The theme continues.
You have no cure for me. Your scientists don’t have the resources, and I relish their desperation. Your neighbors are happier to pretend that I don’t exist, of course, until it’s their child. I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness. I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up, you will cry, wondering ‘who will take care of my child after I die?’ And the truth is, I am still winning, and you are scared, and you should be. I am autism. You ignored me. That was a mistake.
I have yet to meet a scientist who thinks they have enough resources. But I would not describe them as desperate. Neighbours, in my experience are not indifferent. They want to help and they want to learn how. All they will learn from this video is that autism is some spoiled, attention seeking brat who wants to make my life a misery because I ignored him. And he chooses to take it out on my kids.
The second half of the “poem” is the response of the families. It is mainly “we are family, we are the world” clichéd utterances. Is the author really a grammy award winning songwriter? But I just want to highlight a couple of passages.
woman: And to autism, I say…
man: I am a father…
woman: A mother…
woman: A grandparent…
man: A brother…
woman: A sister…
man: We will spend every waking hour trying to weaken you.
woman: We don’t need sleep, because we will not rest until you do.
woman: Family can be much stronger than autism ever anticipated, and we will not be intimidated by you…
woman: …nor will the love and strength of my community.
man: I am a parent riding toward you, and you can push me off this horse time and time again, but I will get up, climb back on, and ride on with the message.
woman: Autism? You forget who we are. You forget who you are dealing with. You forget the spirit of mothers…
all: …and daughters, and fathers, and sons…
(crosstalk: several people calling out “We are” and the names of different countries)
all: We are the United Nations.
man: We are coming together in all climates.
woman: We call on all faiths.
woman: We search with technology…
woman: …and voodoo…
woman: …prayer and…
man: …herbs…
man: …genetic studies…
woman: …and a growing awareness you never anticipated.
man: We have had challenges, but we are the best when overcoming them.
woman: We speak the only language that matters:
all: Love for our children.
woman: Our capacity to love is greater than your capacity to overwhelm.
woman: Autism is naive.
woman: You are alone.
man: We are a community of warriors.
all: We have a voice.
woman: You think that because some of our children cannot speak, we cannot hear them. That is autism’s weakness.
woman: You think that because my child lives behind a wall, I am afraid to knock it down with my bare hands.
man: You have not properly been introduced to this community…
all: …of parents and grandparents, of siblings and friends and schoolteachers, therapists, pediatricians, and scientists.
woman: Autism, if you are not scared, you should be.
man: When you came for my child, you forgot:
all: You came for me.
woman: Autism: Are you listening?
woman: We search with technology…
woman: …and voodoo…
woman: …prayer and…
man: …herbs…
man: …genetic studies…
Voodoo? This odd mix could almost be the agenda for a DAN! type conference, except that it was Christianity not voodoo that killed an autistic child who was the victim of an attempt to exorcise his autism in a store front church. I do not think he has killed anybody yet but DAN! luminary Jeff Bradstreet also advocates exorcism.
woman: You think that because some of our children cannot speak, we cannot hear them. That is autism’s weakness.
woman: You think that because my child lives behind a wall, I am afraid to knock it down with my bare hands.
man: You have not properly been introduced to this community…
all: …of parents and grandparents, of siblings and friends and schoolteachers, therapists, pediatricians, and scientists.
Shouldn’t that read
“Just because some of our children can speak that does not mean you can hear them. Listen to us instead. This community of everybody under the sun except autistic people themselves.”
I will end with this Press Release from ASAN in which autistic people do speak. I am not autistic but they speak for me as well.
Autistic Community Condemns Autism Speaks’ “I am Autism” Campaign
“We are the true voices of Autism,” say Autistic adults; Campaign spreads stigma, prejudice and inaccurate information; ASAN vows protest of upcoming Autism Speaks fundraisers
Washington, DC (September 23rd, 2009) - The autism community reacted in horror today to Autism Speaks’ new “I am Autism” campaign, presenting Autistic people as kidnap victims and burdens on their family members and communities.
“I am autism. I have no interest in right or wrong. I will plot to rob you of your children and your dreams….And if you’re happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain,” says the “I am Autism” video, released yesterday and created by Academy Award-nominated director Alfonso Cuarón and Grammy-nominated songwriter/producer Billy Mann.
“This is the latest in a series of unethical fundraising strategies adopted by Autism Speaks,” said Ari Ne’eman, an adult on the autism spectrum and President of the Autistic Self Advocacy Network (ASAN), “This type of fear mongering hurts Autistic people, by raising fear and not contributing in the slightest to accurate understanding of the needs of Autistic adults and children.” ASAN’s Columbus, Ohio chapter has already made arrangements to protest Autism Speaks’ upcoming local fundraising walk and other ASAN chapters will be making similar arrangements shortly, said Ne’eman.
In addition to relying on fear and pity mongering to raise funds, the Autism Speaks video repeats frequently referenced claims of higher than average divorce rates amongst parents of Autistic children. However, a 2008 study conducted by HarrisInteractive for Easter Seals in cooperation with the Autism Society of America found divorce rates for parents of Autistic children lower than those for families with no children with disabilities. The video also relies heavily on the idea of rapidly increasing autism rates. Another new study, released the same day as the video, by the British Government’s National Health Service found that autism rates among adults are the same as amongst children, indicating that the popular “epidemic” claim of rapidly increasing autism incidence is likely false.
“This video doesn’t represent me or my child,” said Dana Commandatore, a parent of an Autistic child living in Los Angeles, California. “Whatever the challenges that autism may bring, my son deserves better than being presented as a burden on society. Autism Speaks’ misrepresentation makes my life and the life of my child more difficult.”
“Autism Speaks seems to think that parents’ embarrassment at their kids’ meltdowns is more important than autistic kids’ pain,” writes Sarah, an Autistic blogger at the blog Cat in a Dog’s World, “Autistic people deserve better than what Autism Speaks has to offer.”
The new video is reminiscent of the December 2007 NYU Child Study Center “Ransom Notes” campaign, which consisted of faux ransom notes claiming to be from an anthropomorphized disability which had kidnapped a child. Those ads were withdrawn after two and a half weeks, due to widespread outcry from self-advocates, parents and professionals and the condemnation of twenty-two national disability rights organizations, led by the Autistic Self Advocacy Network. The Ransom Notes controversy was reported on by The Wall Street Journal, The New York Times, Good Morning America, The Washington Post and other major media outlets. ASAN announced plans to work with the cross-disability community on a similar response to Autism Speaks’ campaign.
“The voices of real autistic people, and of families who do not subscribe to the presentation of their family members as something sinister and criminal, clearly do not matter to Autism Speaks,” said Paula Durbin-Westby, an adult on the autism spectrum in Virginia, who serves on the board of the Autistic Self Advocacy Network. “Our community is furious about Autism Speaks’ continued exploitation and will be taking action.”
Selected initial responses to Autism Speaks’ “I am Autism” campaign from bloggers in the Autism community follow:
Club 166 (Parent): http://club166.blogspot.com/2009/09/when-will-they-listen.html
“The above video takes up where the Ransom Campaign ended, and goes on from there. Not content just to dehumanize autistic individuals, the Autism Speaks video goes on to paint a picture of horror using the most vivid imagery it can find-your marriage will fail, you will go broke, you will never be able to function in society at all, etc…
Two years ago the NYU Child Study Center claimed ignorance of the way that autistic (and other disabled individuals) felt. The response at that time was heard throughout the country, even in major national media. I wonder what excuse Autism Speaks can possibly come up with this time.”
Turner and Kowalski (self-advocate): http://turnerandkowalski.wordpress.com/2009/09/23/i-am-autism-speaks/
“I am Autism Speaks
I will steal your voice and make sure you can never speak for yourself.
I will steal your parents’ money and spend it on a residence on Park Avenue.
I will use demeaning language to degrade, pity and marginalize you.
I have declared war on you.”
Emily (Parent):
http://daisymayfattypants.blogspot.com/2009/09/what-if-someone-did-this-with-say-downs.html
“This is horrific. I cannot believe that these people thought it was OK to demonize a developmental disorder in this way, behaving as though autism were something separate from the people who have it, like a wart or a blight or a boil that should be burned off or lanced and drained before it infects someone else or destroys your marriage, rather than what it really is, a differential neural construct that is just as much a part of the people who have it as their eye color. Is there any other developmental difference or genetic disorder that could be vilified in this way with an assumption of impunity? Dyslexia? Schizophrenia? Tourette’s? Depression? Chromosomal disorders? Doubt it.”
Sarah (Self-advocate):
http://autisticcats.blogspot.com/2009/09/i-am-autism-embarrassment-trope.html
“Autism Speaks seems to think that parents’ embarrassment at their kids’ meltdowns is more important than autistic kids’ pain. They’re wrong in that, and they’re also wrong to suggest that donating money to Autism Speaks and trying to find a “cure” is the only way to solve this problem. Because while Autism Speaks-funded scientists play with genes in their laboratories, real autistic people are living our lives and will continue to suffer serious anxiety in many public places. Instead of writing another check to Autism Speaks, I suggest actually trying to figure out why an individual autistic person may be experiencing these difficulties. And taking steps on both a personal and societal level to ensure that public places are more accommodating of autistic people.
Autistic people deserve better than what Autism Speaks has to offer.”
–
Ari Ne’eman
President
The Autistic Self Advocacy Network
http://www.autisticadvocacy.org
info@autisticadvocacy.org
732.763.5530
