Marlo Anonymous
Dear Sesame Street,
You make us feel good. You have always made us feel good. As the sibling of a 3 year old child addicted to your show, I have watched you lovingly embrace diversity openly. What a refreshing concept it was. Sweet, honest, educational, authentic entertainment for children.You always seemed to get how to discuss diversity without condescension. My grandmother was in her early 30s when you arrived on her street with your urban celebration of the world and of life on its learning curve, and she has lectured me many times about how amazing your show was (when I sometimes found it annoying). Exposing us to the lives of other children around the world, full of color and difference! Numbers, letters, love and life's lessons, what could be better? You always evoked good feelings, great vibrations. Truly nothing anyone would ever object to. So unlike much of the children's programming that followed and much of the programming being created today.
So why are you hearing objections from me today? Objections that have to do with your decision to team with Autism Speaks?
Because apparently you have become complacent when it comes to your research. Many times, you have purposely set out to research your way into the homes, hearts and minds of families in this matter. You did that, quite successfully.
So what happened? As a company that has succeeded greatly because of intensive research and focus groups, did you fail to research your newest partner, Autism Speaks? The way they characterize autism to the world from their extensive media platform?
Did you research the fact that they DO NOT LISTEN to the very people they claim to support? That thousands of autistic adults and older children hate the way Autism Speaks claims to speak for them. Without even knowing them...without even trying to know them? That Autism Speaks will not even publicly address autistic people about their grievances, they only allow the poooor paaarents to speak? That their Hundred Day Kit for parents of autistic children, which you have promoted in your billboards and advertisements, tells parents to grieve for their living children , and says that marriage problems should be blamed on autistic kids?
It is so uncharacteristic of what I have come to expect on Sesame Street. Especially when it comes to something as important as neurodiversity.
As a beautifully diverse preteen who is unashamedly and openly autistic , radical autism advocate , and the friend of many amazing people on the spectrum, I beg you to DO YOUR RESEARCH. There are many wonderful autistic people and organizations that will partner with you to get the correct educational materials out there in regards to autism.
For example, the Autistic Self Advocacy Network is another nonprofit organization dedicated to helping families and autistic individuals. While Autism Speaks only spends four percent of their very expansive budget on "family services" (actually helping autistic people and their families) and the rest on research for a so-called cure, ASAN seeks to improve the quality of life for autistics by moving society towards a place of acceptance and understanding of autism.
The National Autistic Society is another alternative to Speaks. Based in the UK, they work to spread awareness of sensory processing disorders through their awareness campaign "Too Much Information". Rather than finding a "cure", NAS values the neurodiversity paradigm and instead works on raising awareness and acceptance for autism until everyone understands.
The Autism Women's Network is a nonprofit organization dedicated to breaking stereotypes around autism and supporting women and girls on the autism spectrum. They seek to educate others about autistic spectrum conditions and let females with autism know that they're not alone. These organizations and a few more such as Autism Network International, Autistic UK, and Autistic Inclusive Meets would be happy to partner with you to get accurate autism information out there, rather than you relying on Autism Speaks' fear-mongering techniques they use to scare up funds.
After many years of hammering autism over the head, depicting it as a tragic burden on the human race- don't allow Autism Speaks to fool you. Using your amazing business model to legitimize their "new found" stance of acceptance for autism. They must undo the stigmatic damage they have done to the people on the autism spectrum by themselves. Ask them to be true partners and to finally acknowledge and apologize to autistic people. To do the only authentic thing. INCLUDE autistic adults in their research and policy making.
Please do not assist Autism Speaks in spreading information about autism that does not come from autistic people themselves. I beg you not to work with a company that is known for excluding the autistic voice that has so much to offer.
Your portrayal of Julia had a mostly positive impact, and the good outweighs the bad. Your educational materials for children portray autism in a positive light, and the autistic muppet you created will teach children that different is not inferior, and that quirkiness is, in fact, freaking awesome.
The only negative thing about Julia that I, myself, noticed was that Julia is a side character in her own story. This is a very prevalent problem in our society; we claim to speak for autistic people while completely disregarding the fact that they can speak for themselves.
You portrayed Julia as semi-verbal; she can speak with her mouth parts, but communicates minimally, mostly repeating words and phrases her friends say. There’s nothing wrong with that, but ideally, semi-verbal autistic people should get some alternative communication device, so they can communicate their thoughts to the world and speak for themselves. You failed at giving Julia a way of communication, so other characters do not have to narrate her own behavior.
I know you are very proud of the way you portrayed autism, and may not be open to constructive criticism. I know this may be the first time someone has criticized your new initiative, and you may not know how to react. You may be very defensive, thinking that you portrayed autism correctly, and besides, why should you listen to me, one so called “high-functioning” autistic person, when your representation has gotten so many positive responses in the autism community?
Put down your defenses for a minute. It’s okay. I am in no way disapproving of the entire initiative, or shaming you for your few imperfections or that you might have gotten a little bit of misinformation. I am only telling you to listen to autistic people first. Give us a chance to speak for ourselves, for we are deprived of that opportunity too many times in the media.
You may be asking yourselves what is so wrong with this charity. That autism is an inherently negative thing, ruining the lives of sufferers and family members alike. That I’m just a self-righteous, special-snowflake, politically correct warrior, standing in the way of those who are REALLY autistic, not the smart autistic, the real kind.
Well I reject this narrative, because even the most cognitively disabled among us are not diseased, defective, wrong or disorderly. There is no cure needed for our method of existence. We are like square pegs, and the problem with shoving a square peg into a round hole is not that the pounding takes hard work- it’s that you’re destroying the peg. I know this from personal experience, having gone through what I now refer to as autism conversion therapy- behavior-based “interventions” designed to strip me of my humanity, to train me into submissiveness to neurotypical social conventions. Being normal led to sweets and favorite items, being myself led to time-outs and harsh punishments. I had to cut through ol scar tissue to let out the pain, clean out the wounds, let them heal. I masked and passed, repressed and suppressed, forced myself into something I was not- only to burn out when the dam broke and he immense strain of the act was finally too much to bear.
Perhaps one of the most radical things I have done in my autism advocacy is make a list of things I love about being autistic. I love how deeply I feel- when I love I give my whole self. I love how I notice the little details that others miss. I love how I think both verbally and visually, how I see patterns and make connections. I love how my verbal and writing abilities are greatly enhanced. I love how every good feeling is more, and so much that my body can’t contain itself. I love how I get to feel what it’s like to sing with your body and dance with your hands. I love when the world shrinks down to my special interest, and for a long time, I can make sense of everything, and everything feels good. I love how I get to belong to this rich culture and community, one that will give me unrequited love and support. If someone were to “cure” me of all of this, I would not be who I am today.
I understand that parents of children with more severe disabilities and higher support needs do struggle, and those parents should get to tell their stories too (without, of course, oversharing about their children’s struggles without the consent of the child). But your resources seem to include only the stories of parents, and not those of autistic people themselves. My advice would be to include a range of perspectives; the perspectives of parents, siblings, professionals, therapists, and the perspectives that get routinely silenced, scoffed at, and abused, but that should be elevated above all others when it comes to this topic: the perspectives of actual autistics.
I ask that you amplify the actually autistic voice and stay true to your original plan of only including and highlighting authenticity on Sesame Street!
Respectfully,
Marlo, 11 years old