Sunday, July 13, 2014

Why I don’t want to be cured

I'm a 14 years old girl, I live in Belgium and my name is Saartje.

Why I don’t want to be cured
I have several problems but if there is one of them I don’t want to be cured its my autism. It even isn’t a problem just the way this society works makes it a problem it’s a part of who I am. The only thing that’s a problem is that some people like AS don’t want to accept who I am. But I will fight. I will fight until the whole world accept me as bring equal, as being an human, as being a person who doesn’t need to be cured.
There’s no reason to cure us because there is nothing to cure.
And if you would be cured (wich is not possible) who would you be, you would be a totally different person like the bullie that always bullied you or the popular kid with no real friends. Sometimes you feel lonely and you want to be normall. But let me tell you this there no such thing as normall and when you feel lonely you have to realise that there’s a big great community supporting you and will always got your back. And can be one of strongest voices I’ve ever heard. It’s the autism community. We aren’t disabled, we’re alternatively abled, but we can speak for ourself. Look how we stand up against sesame street and AS partnering. So sesame street shouldn’t you start to listen.

Monday, July 7, 2014

@sesameworkshop - Broken Street

A sign. A street.

The sign hangs crooked, bent over with age. The green paint fades into the white letters. Nobody knows what it used to say. Three-foot-three, she drums her fingers repetitively against the steel.

"Quiet hands."

Her hands slump from the sign without a word. Not that she has any words to slump with.

There are no words on this street anymore.

Her tip-toes toe what was once a hopscotch board, now a faded, dusty frame. She scratches the sores under her shirt, puckered "o's" where the electrodes were stuck.

On the left. three fat steps descend to the sidewalk. The paint on the door is faded. The sign above the door reads "A Hopeful Place." She can read the sign. Everybody thinks she can't.

Lots of places like this have moved in on the street. Some of them have classes where kids get held down until they look into a pair of eyes, or where their hands are shoved into painful things like paint and water. Where a gummy bear means a positive behavior. Where you get drilled on the same things over and over because your body does not report what you know.

Some of them are clinics where children are fed pungent solutions, some that leave them with debilitating pain. They have tubes put in their arms. Sometimes the kids come out with their faces covered in a sheet, their bodies not moving anymore. Inside A Hopeful Place, there are tables and chairs with straps on them. When she was inside this building, she was strapped to a table and burned by the electrodes that they stuck to her body to make her learn. Because the street is a place of learning.

She has made rapid progress since she walked through those doors. 

She no longer talks like herself. She talks like the other kids on the street now. Crisp, clear sentences, full sentences, pronouns. Without repetition, without free-form cadence. With her mouth, not her hands. But her words don't mean anything anymore. They're just a script, a routine that she's learned to act out. This is how she survives the street.

She no longer moves like herself. She moves, like every other child, in predictable gestures, straight lines up and down her arms and legs and back. She moves with quiet hands. She moves pieces of herself as far away as she can. She locks them out. This is how she...

She no longer gazes at the trickle of a faucet. She no longer stares at the creases of her hands. At the glint of a bracelet. Now, she cements her gaze onto pairs of eyes, lets them invade her, tries to understand their speech sounds while the eyes and their emotion commotion fill her head with static. She can never remember their words, but the eyes are all that matter on the street. She doesn't remember the A's, B's, and C's that they recite while she is staring into their eyes.

She can recall the words they used to say around her. "Independent " (she will never be.) "Intelligence" (there are no signs of.) "Functioning" (she is low.) "Career" (she will never have.) "Comprehend" (she does not.) "Severe." "Finances." "Divorce." "Competence." "Behavior." "Manipulative." "Willful." "Failed." "Fault." "Suicide." "Depressed." "Give up." "Lost." "Stolen." "Missing." "Empty."

"Hope" (that she will become something they can be proud of.)

The words she hears now threaten to put her in past tense. Relegate her to an Autistic yesterday. "Recovering." "Progress." "Healing." "Improving." "Indistinguishable." "Typical." "Reduced." "Acquired." "Reclaimed."

She has walked through the faded doors. She has stepped back onto the street, subjugated, jaded into compliance. She has been trained to subdue herself. The shocks cease when she learns to suppress what comes naturally. Her song that is not good enough for anyone else to accept.

She does as she was trained to do. She does it so well. So she is released to the kindness of the street.

The kids on the street accept her now, because they look past what she struggles with. They do not look at what she struggles with. They do not look at her. They pretend that she is someone who they can accept, someone who is just like them.

It's okay to like her because she is just like us. Elmo told them so. Elmo told them that she was just like them. Big Bird told them that there was hope for her. Grover told them that she could get better if she got special help.

Special help from those sun-bleached brick buildings. Special help from A Hopeful Place.

She does not want any more special help from those faded doors and those big, blocky steps. The colorful signs that hang from the bricks, advertising hope.

With her quiet hands brushing the fabric of her skirt, she watches her feet step-by-step-by-step down the cracked sidewalk, her shoes sending tiny rocks skittering with each step. She drags her heavy legs sadly past Mr. Hooper's empty store, past a cracked and sagging doorpost that has seen too many sunny days, bone-white and splintering off in pieces.

All the color has washed out of everything on the street. A long time ago, people here used to celebrate all the different colors that make the world so wonderful. Now, the people's claims of tolerance and diversity have ceased to have meaning to the children of the street.

Now, everything is faded.

The once-sweet air blows loose and swirling dust through the store's open windows. Friendly neighbors' doors are all closed, and windows are boarded up. Fear of life's vibrant color locks the friendly neighbors captive inside. Nobody wants to meet where the color is brilliant and the doors open wide to children's minds. Instead, clouds obscure the many shades.

Clouds cast everyone in uniform gray.

Puzzle pieces adorn the street. They drain away all the colors of the children, leaving only dust and splintering boards.

This is a pretend-nice place.

A brightly colored top in a patch of grass distracts the eye from the listless uniformity of the people. Even the chalk-rainbow on the next sidewalk square has been washed away.

Ernie slouches his way down the opposite sidewalk, a watery half-smile sitting atop his chin. He lifts one hand kindly, but his shoulders droop under the heavy clouds that cannot be chased away. Cracked sidewalk rises to carry his feet through the quiet. Rust reaches out to him from broken pipes, trying to stain him with surrender.

This is the street. The street is broken. For Autistics, it will always be. Broken. Because this is what Sesame Street has said to us.

You can be fixed. You can be just like your friends. We can help you. You are welcome on our street... if you learn to be someone else.

A sign hangs crooked in the background. It once said "Sesame."

A hopscotch board, with no numbers, only labels.

This is the street.

It is broken.

Kitt McKenzie Martin

Sunday, July 6, 2014


Sesame Workshop,

My brother was two years older than me so I watched Sesame Street even before it was appropriate for my age because he was watching it.  My parents are both educators and they limited our tv access in the earlier years of our life.  Sesame Street and the Electric Company were two of the few shows we were allowed to watch.  My parents believed in Sesame Street so much that my brother’s first birthday cake was Big Bird.  He’ll be turning 34 soon.  I thought about getting him another Big Bird cake for his birthday, but I can’t support anything related to Sesame Workshop now that you have decided to partner with Autism Speaks. 

As an Aspie, this partnership of yours hurts me.  It has taken years for me to accept my autism and to not hate myself for not being ‘normal’ like everyone else.  Even now I still sometimes slip back into that mindset.  I always been a huge fan of Jim Henson’s work.  I have almost all of the movies and tv show episodes that have been released.  I also was a collector of the Palisades Toys’ Muppet Action Figure line.  I have almost every product released in that line.  I even have a prototype of the Jim Henson action figure.  I had planned to collect their Sesame Street line too, but Super Grover was the only of those that went into production.  I used to love those action figures.  In my darkest times, all of Jim Henson’s muppets (not just the ones owned by Disney) were the go to distraction when I needed to feel better.  Now when I look at them I am reminded of your partnership with Autism $peaks and I feel sad. 

I know that the lack of understanding about my neurodiversity has seriously impacted my life.  It isn’t as though I can just tell a potential employer that I as socially awkward or don’t make a great first impression because I am Aspie.  The horror stories they have heard from groups like Autism $peaks cause them to assume that I couldn’t possibly do the job.  I even encountered discrimination concerning health care due to my Aspie-ness.  I was excluded from a clinical trial for a medication because I was diagnosed with a form of Pervasive Developmental Disorder.  The people that set up the protocol believed that all people with PDD are unable to communicate effectively.  The trial was the first trial for any treatment for my illness, but I wasn’t allowed in because of the assumptions people have from listening to the stuff spewed by Autism $peaks.  I still struggle with my illness and I still don’t qualify for a clinical trial because of the popular misconceptions about people with autism.

Please end this horrible partnership and preserve the welcoming environment Sesame Street had been for so many.  I sincerely hope that you will come to your senses so that I can get my brother a Big Bird cake for his birthday next year.

Saturday, July 5, 2014

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,

Friday, July 4, 2014

@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 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: 

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. 

Thursday, July 3, 2014

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.

Wednesday, July 2, 2014

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.