The following is an article I wrote for the January 2014 issue of Autism Parenting Magazine. The very same issue in which Editor-In-Chief, Leslie Burby, announced that the magazine fully supported the Boycott of Autism Speaks. I have always been happy to write for Autism Parenting Magazine, it’s an excellent resource. However, when I saw Ms. Burby’s editorial, I was proud: Proud of the magazine’s direction and proud of Ms. Burby for taking such a bold and positive editorial stance in support of the Autism Community.
Please show your appreciation and support to Ms. Burby and the magazine! Head over to Autism Parenting Magazine (use the link above), enter your email in the space provided and you will receive the latest issue for free!
The Boycott of Autism Speaks
Being Autistic and the parent of Autistic children, the boycott of Autism Speaks is an important topic that hits very close to home…
And I’m on board.
Personally, I have never been a fan of the organization, due to their lack of respect for Autistic people and their use of fear and pity to garner support – not to mention a mission hinting at eradication. Because of these things, I have ignored its existence since I first stumbled upon them. However, in November 2013 Autism Speaks created its own advocacy debacle, which put an end to my silence. Something so unsettling, so reprehensible, my status as an advocate was changed almost overnight, to…
You see there is a steadily growing movement that I am both honored and excited to be a part of, and that is the…
Boycott of Autism Speaks!
Oh, how I love the sound of that! It’s quite a tall order, I’m well aware of that, but even Rome eventually fell. We (advocates, activists, allies, disability rights organizations, families and friends) are calling upon corporate sponsors to boycott Autism Speaks. Why on Earth would Autistic people and their allies want to boycott the world’s largest autism advocacy organization?
I’m glad you asked…
Twitter Bomb: Social Media as an Ally
On Monday, December 9, 2013, I joined many in what was known as the ‘Boycott Autism Speaks Twitter Bomb.’ The idea was to spend the entire day contacting corporate sponsors that support Autism Speaks and, using Twitter, provide information about the boycott (http://boycottautismspeaks.com/) and ask them to reconsider their support of the organization. The Twitter Bomb was only the beginning. We are building momentum from supporters all over the world each day with people and organizations that are openly voicing their disapproval of Autism Speaks.
Why would Autistic people and our supporters want the world’s most famous autism advocacy organization to be boycotted? Simple, we don’t agree with the way in which Autism Speaks depicts us as a population. And we don’t agree that they (or any other organization for that matter) have the right to decide whether or not Autistic people should be allowed to exist because of a disability. How can you claim advocacy of a people you are trying to eradicate? That’s not advocacy, in fact it’s just the opposite. The following is from the Autism Speaks ‘About Us’ link on their site
“… Autism Speaks has grown into the world’s leading autism science and advocacy organization, dedicated to funding research into the causes, preventions, treatments and a cure for autism;”
The words I find most disturbing, the ones that scream “Warning!” are preventions and cure. If you follow my blog (http://srsalas.com/), you know I love to define words, so let’s define these two and see what Autism Speaks is talking about:
prevent – to stop (something) from happening or existing
cure – something that ends a problem or improves a bad situation
Using the definitions above from Merriam-Webster’s online dictionary, it appears that Autism Speaks is looking to end a problem or possibly, stop that problem from happening altogether. Is this support of a people? Is it advocacy?
As parents, we have to pay closer attention to the conversation, the one being held without Autistic people (without our children). Autism Speaks’s message is laden with fear-mongering tactics. At what point was it decided that it would be okay for this organization to speak so reprehensibly about the very people it is supposed to be supporting?
“These families are not living. They are existing (…) Life is lived moment-to-moment. In anticipation of the child’s next move. In despair. In fear of the future (…) And, what about their parents (…) How long will it be before exhaustion makes them ill? How long before they break?” - Suzanne Wright, co-founder, Autism Speaks
By portraying our children as burdensome and tragic, Autism Speaks provides the illusion that they are doing the world a favor by ending our misery. These are our children they are talking about! Through a cure, it seems the goal is to rid the world of autism, but it is not the illness they imply, it is a differing neurology. When they say they want to prevent autism, what they are in essence working toward is erasure of a people. This is hate, pure and simple! And why is this organization allowed to speak openly about it?
Money talks, of course!
And it’s wrong. Unfortunately, they have lots of money and freely say whatever they like about disabled people, and they do so with little or no ramifications.
This is a dangerous monologue that needs to stop.
The first time I encountered Autism Speaks was about 5 years ago. My son, Sebastian, had been informally diagnosed with autism - his formal diagnosis would come 2 years later followed by mine, and then my daughter’s. Back in 2008 their website was my first stop, mainly because I had heard of them. My visit, however, was short-lived and after about 20 minutes I had had enough. How sad I was after what I had read! Devastated! And not about autism, but about the hateful, ignorant things this organization had to say about my child! This was support? Advocacy?
Not even close.
Over the years Autism Speaks has referred to us in many demeaning ways, it’s their angle. They have called us diseased, referred to our children as kidnap victims and implied that we are gravely ill, to fuel their mission of prevention and cure. ‘Boycott Autism Speaks’ is an advocacy effort created by Autistic people and their allies who are tired of the organization’s hateful rhetoric, lack of Autistic leadership and most recently, the November 2013 debacle I mentioned above: ‘Autism Speaks to Washington – A Call for Action’ http://www.autismspeaks.org/news/news-item/autism-speaks-washington-call-action penned by Co-Founder, Suzanne Wright. Personally, I found it to be one of the most disrespectful, hate-filled advocacy pieces I’ve ever seen. Autism Speaks, the very organization that claims to advocate for Autistic people describes our children as missing, burdens to our families, and account-draining home wreckers. “This is autism,” they say.
No, this is fear-mongering.
Watch Your LANGUAGE!
Autism Speaks uses fear and pity to wrangle financial support, and we all know what powerful motivators fear and pity are. Honestly though, how can one in good conscience dehumanize a population of people one purports to help, and have an ounce of credibility? Unfortunately that question was answered with a $25 million donation in 2005 http://www.autismspeaks.org/about-us and went downhill (for Autistic people) from there. Below are quotes from the ‘Call for Action’ that really hit a lot of us where it hurts - our hearts.
“If three million children in America one day went missing…” (But our children haven’t gone missing, they’re right here)!
“If three million children in America one morning fell gravely ill…” (But our children aren’t sick with autism, because it isn’t an illness)!
“Yet we’ve for the most part lost touch with three million children…” (Who is this collective “we” Autism Speaks’s claims has lost touch? The parents? Because we most certainly have not)!
“We’ve let families split up, go broke and struggle through their days and years.” (You cannot separate autism from our children, it’s a part of who they are. Blaming children with disabilities for ruining their families is damaging and dangerous language).
Autism Speaks tells us that “This is autism.’”
Something interesting I’d like to point out is that this ‘Call for Action‘ speaks only of Autistic children. That’s strange… Is the implication that we’ve gone missing as children never to return? Because I for one am sitting at my laptop typing this, my Autistic kids in the next room. Several of my Autistic friends are on Twitter and Facebook at the moment, and some are home with their families having dinner. So in case you were adding any weight to the idea that Autistic children go missing, I’d like to assure you that we are not now, nor have we ever been missing. So why call our children ‘missing’ when they’re right here with us?
Because it’s scary and it ignores their beauty and goodness; it takes away their humanity by describing them as no longer with us.
Frightening parents with the threat of missing children is bad enough, however the ‘Call for Action’ further patronizes by claiming that our families are not living, but merely existing; that we live our lives in despair, fearing the future.
Interesting… I was never polled.
No one from Autism Speaks interviewed our family and inquired into our wellbeing. As a matter of fact, being an avid supporter and participant in boycotting Autism Speaks, I am in daily contact with many, many families whose lives are nothing like what the ‘Call for Action’ claims. So how are they able to make these blanket statements about all of us? And since it’s not true for all of us, then who are they speaking for? Hmm… Good question because I can honestly say:
Autism Speaks does NOT Speak for my children, my friends or me.
Why Is Autism Speaks Continually Talking About Us Without Us?
I find it disturbing that there are no openly Autistic people in senior leadership roles within Autism Speaks. How can an organization run by non-Autistic people claim to speak for us? As I mentioned earlier, many Autistic people, and I’m one of them, very openly disagree with the organization’s mission, its lack of Autistic leadership, and its damaging language. The motto of the disability rights movement has long been
Nothing About Us Without Us!
And I couldn’t agree more! It only makes sense that if you want to truly support people you must listen to and work with them. Interestingly enough, the one openly Autistic person in a notable position with Autism Speaks, John Elder Robison, resigned in protest of Ms. Wright’s ‘Call for Action.’ You can read about Mr. Robison’s resignation here: http://jerobison.blogspot.com/2013/11/i-resign-my-roles-at-autism-speaks.html
I wanted this to be a personal piece, a conversation between us. I don’t want to inundate you with statistics, however I urge you to read the highly respected Autistic Self Advocacy Network’s ‘2013 Joint Letter to the Corporate Sponsors of Autism Speaks’ http://autisticadvocacy.org/2013/11/2013-joint-letter-to-the-sponsors-of-autism-speaks/ This letter, co-signed by a notable list of disability rights organizations, offers a clearer picture of the harm Autism Speaks is causing the Autism community.
What’s In A Word?
Missing. Burden. Tragic. Embarrassment. Illness. Fear. Despair.
These are not words that make me feel good. Words carry a lot of weight and Autism Speaks wields them too effectively. They artfully blend a message of advocacy and erasure as they depict us as pitiable individuals existing only as burdens to society. With their mission to prevent and cure, they talk about us as if we shouldn’t be allowed to exist. This is not advocacy nor is it awareness, and it most definitely is not acceptance. This is no longer only an autism issue, it is a disability rights issue, and a human rights issue
The following is a quote from Peter Berns, CEO, the Arc, from his ‘Open Letter to Suzanne Wright…’ condemning her language against disabled people http://blog.thearc.org/2013/11/16/open-letter-suzanne-wright-co-founder-autism-speaks/
“Unfortunately, your description of children with autism and their families is polarizing and divisive (…) Characterizing people with autism and their families as victims suffering from dreaded affliction ignores the diversity of the community of people with autism, as well as their creativity, perseverance, adaptability, resilience, and overall beauty of their human spirit.” - Peter Berns, CEO The Arc
Autistic people are valuable human beings, no less than our non-Autistic peers. The Autistic people and the families that I connect with daily are not interested in cures, my kids and myself included. We do not hate what we are because we are loved and accepted by those around us. They do not speak to us of how we need to be fixed, or how we might have been better, or how they dream of a cure. Our supporters speak to us of how we enrich their lives just as we are.
Accommodation. Inclusion. Acceptance
I like the sound of these words much better. Autism is a disability, no doubt, and we need supports and accommodations in varying degrees. And this is why we advocate: For better education, more services, inclusion and acceptance, and for the supports and accommodations that are necessary so our children (all Autistic people) can live successfully in society along side their non-disabled peers. And we also advocate for the families whose love and belief in their children is essential, because families need support, too.
One of the most important phrases I learned during the Virginia Board for People with Disabilities, Partners in Policymaking program (http://srsalas.com/?p=2177):
Disability is a natural part of life.
Advocacy is about working with and supporting people with disabilities. It is not about verbally dehumanizing people, nor is it about erasing them because of their disability.
No matter the extent of a person’s disability, it is not up to Autism Speaks or anyone else to decide whether or not a human being is worthy of existence.
The next time you see an advertisement or fundraiser raising money for a cure, I hope you will take a moment and think about what that cure might mean. These are our children they are speaking of; our brothers and sisters; our families and friends!
People we love and are grateful to have in our lives!
I hope my words have made a difference to you. I hope you will join us in support of our loved ones as we band together urging sponsors to Boycott Autism Speaks.
Excellent Autism Resources:
Autism National Committee http://www.autcom.org/
Autism Network International http://www.autreat.com/
Autism Society http://www.autism-society.org/
Autism Women’s Network http://autismwomensnetwork.org/
Autistic Self Advocacy Network http://autisticadvocacy.org/
National Council on Independent Living http://www.ncil.org/
Boycott Autism Speaks Information:
Boycott Autism Speaks http://boycottautismspeaks.com/
Facebook Page https://www.facebook.com/groups/boycottautismspeaks/
Follow on Twitter @Boycott_AS , #BoycottAutismSpeaksby