Dear @SesameWorkshop

Dear @SesameWorkshop

I grew up watching Sesame Street. I learned the alphabet from it. I’m British, but throughout most of my childhood I pronounced the letter Z the American way, ‘zee’, as I learned from Sesame Street, rather than the British ‘zed’, despite by parents’ best efforts to make me sound British. Sesame Street teaches children things. It influences their language and thoughts. This has the potential to do so much good.

Autism Speaks does not speak for Autistic people. They are a charity, but this does not mean they do good. Their message is that Autistic people are tragic burdens, missing children, an epidemic. Is this the message you want to teach to children? Autistic people are present, whole, complete people, a natural part of human diversity, as valuable as those who are not Autistic; but Autistic people are in desperate need of support and acceptance, neither of which they get from Autism Speaks. The message of Autism Speaks harms Autistic people because it affects how people think about them, and this determines how they are treated by society. If you partner with Autism Speaks you will spread their message to Autistic children’s peers, their future teachers, employers and family members, as well as to Autistic children themselves, damaging their self esteem.

Please help Autistic people by rejecting Autism Speaks and their message of hatred.

Thank you for reading this,

Clare

@SesameWorkshop: You Have So Much Power; Please, Use It Wisely.

I understand that your executive decisions on corporate sponsorship are not going to be easily influenced by a few well-written blog posts or a few nicely-edited images. I understand that fame begets fame and that there are many practical advantages for an organization to partner with another well-established organization.

But all of this understanding and practicality means little when I look into the eyes of my 16 month old niece. 

She hits all of the developmental checkmarks, some of them well in advance. She makes great eye-contact and speaks a few words...in two languages, no less. She smiles, laughs, plays, and drives her poor mother crazy with her agility, speed, and curiosity.

But I assure you that she wouldn't be an ounce less loved, an ounce less adored, celebrated, and even spoiled, if this were not the case. I would tell her this in a heartbeat. Her mother would tell her this in a heartbeat, as would her father, her grandparents, and most everyone else who knows her.

You would tell her this, too, wouldn't you? I would like to believe that you would tell every child out there that their being loved, respected, and accepted isn't contingent on their ability to do what the textbooks say they should be doing or to not do what the textbooks say they should not be doing. You would tell them this, right?

Autism Speaks wouldn't, at least not as the organization is presently run. Much of the advertising and information put out by Autism Speaks is a message of one's worth, one's acceptability, being largely based on how one measures up to the checklists set out by doctors, that one should not exist unless one is "healthy" and "normal." The proof is everywhere, as many of these heartfelt pleas have already mentioned (but, for your easy access: 

http://www.autismspeaks.org/news/news-item/autism-speaks-washington-call-action, in which autistic children and their families are implied to be "not really living"; also, see http://www.autismparentingmagazine.com/issue-14-asd-options-living-independently/#.U7XmWvldUnV).

I do not want my niece to grow up in a world where messages like this, messages of fear and hatred, are shoved in her face, especially not by her colorful, happy, singing friends at Sesame Street.

I want her to grow up up in a world where she knows, without a shadow of a doubt, that she is still worthy, still loved, still so incredibly precious to this world regardless of what challenges she faces or what flaws she may have.  

I want her to grow up in a world where autistic aunts don't have to worry that their nieces will be treated with less love and respect than they deserve if the child grows up to be "like them."

And you, my friends at Sesame Street, can help us to create this world. You have already done a pretty good job at this by creating a community of characters that love and accept each other in spite of--no, because of--their differences. You can further this message by partnering with organizations that preach the same celebration of diversity.

Autism Speaks is not that organization.

Thank you for your time. 

From a kid to @SesameWorkshop

 Dear Sesame Street,

I am a 12 year old girl. I'm not autistic, but there are many people who are autistic in my family. When I came to America as a little kid I didn't speak any English. But I watched your show, and I learned a lot. I love Sesame Street and it helped me to be ready for school.  I don't watch it anymore because I'm too old and it's boring to me now.  But my brothers and sisters still love Sesame Street, especially the younger ones.

They are autistic, and they don't like a lot of shows sometimes. They like to watch the same shows a lot over and over and don't always like to watch new stuff.  But your show is different and they like it. Sometimes when it comes on they jump up and down and start flapping their hands.

I used to think Autism Speaks was good, but then my brothers and I saw their terrible videos on YouTube. It made my brother cry so hard.  It isn't cool that Autism Speaks thinks autistic people are a problem. My brother and sister are not a problem. They sometimes get on my nerves, but not because they're autistic. It's because little kids can be annoying.

I don't care about them being autistic because I love them. That's just how they are. I don't think it's weird to be autistic, but a lot of people do think it's weird because they don't know a lot about autism. And what they do know is bad.

Kids and grown ups are always like, "Oh, I'm so sorry they have autism. I bet that's really hard."  They think it's something bad. If this is how they think now, it will be even worse when they start listening to what Autism Speaks says.  Please find somebody else to work with about autism stuff.  I don't want even more kids thinking something is wrong with my brother and sister. They're autistic. Not terrorists.

Dear Sesame Street

Dear Sesame Street

I am a 27 year old mother of 3 and have loved your show since I was a baby myself. I have noticed a lot has changed over the years but the show continues to be educational and fun, thank you for that. I once watched Sesame Street with my children, but not anymore. You see, your partnership with autism speaks absolutely saddens me. I have 2 autistic sons who I love, cherish and accept whole heartedly. I would never change them. I would never want their autism cured. I love their autism and one day when they are older they will too. Autism speaks does nothing but damage autism awareness. Please don't continue this horrid partnership, I beg you to do your research.

Yours sincerely,

An autism mum who believes 'nothing about us, without us'.

Letter to Sesame

This essay is written by Sarah Akin. She can be found on twitter at @crythecrawling.


I know what you've been told:

We're just a fringe group of Aspies who don't think autism is a disability.

We're too "black and white" in our thinking to separate the affliction from the individual.

We don't know suffering and are wholly incapable of empathizing it.

Maybe you've heard that we're angry "loners."

Maybe you've heard that we're not Autistic at all.

Well, if that's what think, you haven't been listening. Not to us. You haven't heard a word. You put up your defenses the minute we challenged your preconceived notions.

Put down you defenses for a moment. It's alright. This information needn't alter your sense of self. But your perception of me needs altering. And that's something a compassionate person would want to know. Sesame promotes compassion. Put down the defenses that hinder it.

I'm Autistic. I'm speaking. This is what I have to say.

Yes, I do consider myself disabled. I have social deficits. I get lost easily. I have great difficulty multi-tasking. I have little sense of time or chronology. I'm unable to drive. And, like all Autistics, I sometimes get overstimulated to the point of shutting down completely. Neuro-psychological testing confirms all this. And I have a lifetime of experiences to confirm that I'm "odd." In the language of diagnostics, I have a marked, noticeable learning disability.

But diagnostics doesn't define me. And diagnostics doesn't define autism, either.

You see, that's the thing about language. Someone creates a diagnostic category and suddenly we're all thinking in absolutes. And I don't just mean the myth of high/low functioning. I mean that, quite suddenly, this profile arbitrarily determined by humans becomes, through language, a solid entity in our collective consciousness — one to be isolated, dissected, extracted. To put it another way, diagnostics is very black and white. Those of us on the Autistic spectrum tend to take a more nuanced view.

Hans Asperger said, "For success in science and art, a dash of autism is essential." Singular thought and singular determination, passion, focus, attention to detail, experiencing every moment in full technicolor, asking questions, seeking answers, and meeting challenges with care and an enduring childlike whimsey. That, too, is Autism. That's also Sesame Street. Along with the rest of my generation, I grew up on your street. I loved, and still love, its residents. I loved, and still love, Jim Henson and all that he stands for. Preserve that legacy. Preserve the fragile spark that exists in every child, including the child that was me.

As for suffering, well...

Yes, I've suffered. I've been called "stupid," "creepy," "stubborn," "naive," "embarrassing," "antisocial." I've been exploited…and then blamed for my own exploitation. I've been forced to suppress the self-stimulating/self-soothing behaviors that enable me to function. I've been taught to disregard my own boundaries and my own experience as irrelevant. My spark was smothered. And from the first moment I encountered Autism Speaks, I understood — without being told, without knowing others felt the very same way — that harm was being done to me and to my community.

But let's really talk about suffering.

Let's talk about punitive electric shocks. Let's talk about seclusion, restraint, food deprivation. Let's talk about people exploited/degraded on film with not a thought to consent or human dignity. Let's talk about a mother detailing thoughts of murdering her Autistic daughter, right in front of her daughter, and explicitly stating that her other child is the reason she didn't go through with it. Let's talk about children blamed for divorce, debt, and any/all emotional instability exhibited by adult caretakers. Let's talk about violence written off to "lack of services" while putting only about 3% of funds into said services (and 10x that into salaries). Let's talk about the systematic dehumanization that makes all this possible — because children have, in fact, been described as "missing," "kidnapped," "soulless."

This is what you get when you partner with Autism Speaks. This is why Autism Speaks lobbied against expanding the role of self-advocates.

They never apologize. They never listen. They control the narrative, distort what is plain — and deny, deny, deny.

These are not the values you claim to represent.

To @sesameworkshop from Stephanie E De Haven

If Sesame Street didn't exist, I would not be able to read. My parents were substance abusers, and I am autistic.

Thanks to Sesame Street, I was ready for school. I have a Master's degree now, and am a multiply published poet.

Autism Speaks is a hate group. So my accepting childhood teachers and friends have allied themselves with a group of people who think my life is not worth anything and my voice is nothing.

But you gave me my voice, Sesame Street. So there are no more sunny days, and I can't remember how to get to Sesame Street.

~~Stephanie E De Haven

@SesameWorkshop - don't be a hate group

"Dear Sesame Workshop:

There are about 7 million autistic people in the United States. Well over 100 million worldwide. None of those people, their children, their allies, or their allies' children will be able to watch Sesame Street if it is a source of anti-autistic hate speech. Hate speech is all you have to offer if you get your information from a hate group, which is what Autism Speaks is. If you wanted to promote messages of racial tolerance, you wouldn't partner with the Ku Klux Klan. Autistic people are uniquely qualified to offer information about autism, but Autism Speaks actively excludes them. So flip the Big Bird at them and instead partner with the Autistic Self-Advocacy Network, an organization run by autistic people themselves."

 Daniel Obejas.