Not in My Home @SesameWorkshop #BoycottAutismSpeaks

 

Image Description: A photo of me in 1982, turning two years old. I have a Sesame Street Birthday hat and dark blue overalls on, standing in front of a cake decorated with Ernie, Bert, and Big Bird and lit birthday candles. My grandmother is standing over me, helping me clap my hands. My uncle is in the background smiling with my same age cousin, also in a party hat. It is one of my very first memories. I wanted to eat the character decorations more than the cake. Thirty years later my Autistic twins also had a Sesame Street themed second birthday. It was a completed circle in my life.
It was beautiful, but now it is not.

To all those involved in the creation and distribution of Sesame Street Workshop programing,
To all those who view Sesame Street programing,

For my Autistic friends and family,
For my Autistic sons,

Today I will take down the Big Bird wall hanging in my Autistic children's play area. I will gather their books and toys with the brightly colored characters and put them in a box. I will put the photographs of my second birthday and my sons' second birthday away. I will take the Grover magnet that has been on my refrigerator for the past 30 years off. I will be done with Sesame Street.

Today is the day that Sesame Street is no longer welcome in my home.

I will NOT, however, be done protesting their partnership with Autism Speaks.

I am mad. This month, we at #BoycottAutismSpeaks have pushed hard. We have worked tirelessly to help Sesame Street Workshop understand the mistake they have made by supporting Autism Speaks, and to learn about Autism from the source, Autistic people themselves. We did this because we care about Sesame Street. We worked because we love all children and believe they deserve an authentic education no matter the topic. We rallied because we appreciate the advances in civil rights Autistic adults are making. We dug deep because Autistic children deserve better from Sesame Street, and from the world. Everyone deserves better than Autism Speaks and the fear inducing tactics that they use. Every single one of us.

That is it. Everyone was welcome on Sesame Street, at least that is what the show has always portrayed. For some reason though, Autistic children and their elders aren't allowed on the street. Though Sesame claims to want to include Autistics, they partnered with Autism Speaks, which is an organization that clearly wants Autism to be eliminated. Autism Speaks treats Autistics as if they were diseased, when the truth is, they are simply a natural part of our human diversity. If my Autistic children, my Autistic family, and my Autistic friends are not welcomed as they are on Sesame Street, well then Sesame Street is not welcome in our home either. I will NOT subject my children to that bigoted approach.

Sesame Street is not simply ignorant now. Their stance has become willful. They have had a month, and longer, to figure some very basic things out, like Autistics do not want a cure they want acceptance and inclusion. Yet, they have chosen to ignore our attempts to reach out. They have ignored Autistic people themselves. They have been pretending as if we do not exist at all. Their actions serve to silence and erase a people trying so desperately to be heard. Sesame Street has the opportunity and now the knowledge, to become a true ally to Autistic people, which is exactly what Autistics need. Sesame Street has one of the only platforms big enough to compete with the monster that is Autism Speaks. They have made no attempts to do so. They have chosen to work against Autistic rights, human rights. They have stood firm in their partnership with the enemy of Autistics.

And I will continue to stand firmly against Sesame Street.

Though the damage they have and will do by maintaining their support of Autism Speaks is most important and detrimental to the Autistic community and their loved ones, Sesame Street has also done a major disservice to themselves. No longer can they claim to be a champion of diversity. I will call them out every time. We should all call them out. Instead of learning about Autistic culture, learning about the beautiful, and creative, and loving, and sensitive people that Autistics are, they have denigrated their own values by avoiding us. They have betrayed themselves. It's a shame that Sesame Street is not what it used to be. I can't imagine it was all a hoax, but doing the right thing is hard, and they have taken the cowardly way out.

Sesame Street, you are not welcome in my home as you are. You must change your mind about Autism!

When you do, I will gladly open the door again.

Until then,
Heather Clark

'Sesame Street' Partners With Autism Speaks: Why Are Autistic People Upset?

This post written by Michelle Sutton originally appeared on the Huffington Post.


One of the most important things I have learned as a parent to autistic children is the value of listening to autistic adults. As a person who is not autistic, listening to autistic voices is essential as they can give me an insight into my children's lived experience that I cannot gain anywhere else. As K, from Radical Neurodiversity Speaking says:

The first thing you need to do isn't find therapists. It isn't commiserate with other parents. It isn't become an AAC expert (though all of these things have their place!). It's something not in the autism introduction packet: you need to connect on a human level with adults like your child. You need to go make some Autistic friends.

I agree with all of K's reasons too -- autistic people are awesome to hang with, loyal friends who care deeply about their friends. My kids benefit from me being tapped in to autistic culture, and will more easily have access to role models themselves if I have autistic friends. If I don't introduce my children to autistic adults, how will they meet others like them? But don't just take my word for it, read what K says for yourself, here.
 
Because I value the voices of autistic people as a way of supporting my children as they navigate life in a world not made for them, when I hear my autistic friends say they are upset about something I want to know why.

Recently, my friends have been telling me they are upset about the partnership between Autism Speaks and Sesame Street to promote acceptance of autism as a form of diversity. Sesame Street is really good at promoting diversity. The reason my friends are upset is not that Sesame Street wants to focus on autism -- it is that Autism Speaks is involved. And I think they have a point.
I have written previously about Autism Speaks here and here.

The key issues I have with Autism Speaks are that:

1. they claim to represent autisic people, but have no autistic board members;
2. they put more of the money they raise in the name of helping autistic people into researching to eradicate autism, and therefore autistic people, than they do actually helping them (in fact, they pay themselves more each year than they put into helping autistic people); and


3. they convince people to donate to them by sending out a message that Autism is a tragedy, burden and disaster that ruins entire families lives, and that Autistic people and their families are constantly suffering and barely living.

I, for one, do not want an organization that aims to get rid of my kids neurologies helping with a project that is designed to promote acceptance of autism. My friends don't want Autism Speaks speaking on their behalf in this way either. They are justifiably upset. And they are speaking up for themselves to let people know they are upset.
Amy Sequenzia says:

Sesame Street, this is an Autistic speaking.
Don't partner with an organization that silences us.
We are proud of who we are and we want all kids to feel this way.

Lei Wiley-Mydske explains:

I am an autistic parent to an autistic child. I grew up watching [Sesame Street], and my son has too. I encourage you to end any partnership with Autism Speaks if you wish to truly celebrate diversity.

I would be THRILLED to see autism portrayed on your show, but not when the message is one of despair and fear. Or one that would pretend that disability is shameful.
In developing this project, please remember that autism is not something we do to our families, or our communities or anyone else. Autism is how my brain works and interprets the world around me. Our stories deserve to be told with US doing the telling. Not with someone else speaking for us. Again.

Please don't allow a group like Autism Speaks continue to dominate the conversations about autism. They do us harm. You do us harm when you partner with a hate group who wants to prevent people like my son and I from existing and spreads harmful and dehumanizing rhetoric about us.

There are others speaking up too. Not just autistic people, but parents of autistic people and friends of autistic people. There is a whole movement dedicated to addressing this problem. If this is an issue you would like to help do something about you can find more information at Boycott Autism Speaks Facebook Page. On Twitter check out hashtags #BoycottAutismSpeaks and #EducateSesame You can also sign a petition to Sesame Street here.






 

One of these things seems just like the others – one of these things is 'zactly the same...@SesameWorkshop

Educate Sesame Street about Autism Speaks. Frankly, after over four decades of working for and with “nonprofit” organizations, I am not sure this will do any good.  As a “nonprofit” organization, I see no  difference between Sesame Street's parent organization and any other such entity, and so believe that the same factors motivate them as motivate Autism Speaks.  And those are the Almighty Dollar and What They Can Get Away With. Above all, Money makes strange bedfellows.

I hate to rain on anyone's parade – but I have learned that most nonprofit organizations do not really care what their socalled constituencies think or want.  If they did, they might work themselves out of existence.  Instead, they care about perpetuating themselves, maintaining employment for their staff and administration, and per diems for their Boards.  In my experience, the only differences between most “nonprofit” organizations and most corporations are that corporations  at least have to be accountable (on paper) to shareholders and the organizations chase income in different ways.  I wish I had a tenner for every time I, as a Development Consultant, advised a nonprofit that it was unethical to misrepresent what they were doing to dip into a new pot of money....and they  did it anyway.  

I imagine that a refreshing burst of naivete resulted in the thought that CTW or Sesame Workshop or whatever guise they are in today would even consider what Autistics and allies think, if it might conflict with a new way to bring money for operating expenses in the door and put another product (and its rights and spinoffs etc.) out the same door.  The problem is that naivete of the way the world works results in an unrealistic view of potential impact.  And face it, in a capitalist society, money rules. Whatever end-of-the-rainbow pot of gold Autism Speaks is presenting probably looks sweet to the “Development Personnel” at Sesame.  And how their actions appear to neurodiversity activists is probably pretty far down in their list of impacts to the organization.

No matter how much I think, and how much I try to find words, and how much I try to believe I can have an impact on a nonprofit juggernaut, I am stopped by the wall of Experience.  I come up against years of work and volunteer life, and the unfortunate tendencies of organizations and their Executives to want to fit in, think as little as possible, and jump like smallmouth bass at potential new financial resources.  Those tendencies rarely include a sense of shame or even embarrassment at being caught with one's “due diligence” being less than diligent, respect to a consituency being less than respectful, or stated values being in conflict with actions taken.  

Take diversity as a stated value.  Take respect as a stated value.Take being different, more caring, more inclusive than the corporate mold as a stated value. Take presuming competence as a stated value.  Take the worth of each individual as a stated value.  Take the utility of Rubber Duckies as a stated value.  On every one of those yardsticks (well, maybe not the Rubber Duckies), Autism Speaks  comes up short.  http://www.philanthropydaily.com/understanding-the-puzzle-of-autism-speaks/  http://www.huffingtonpost.com/michelle-sutton/sesame-street-partners-wi_b_5466917.html

Sesame Workshop, do you really want to be  just like the others, or be the “one of these things (that) is not like the others,” as your values seem to claim?

Jane Strauss is a photographer, attorney in remission, autistic jewish feminist woman, educator, former Development Director in a nonprofit, and parent to 5 amazingly diverse offspring who also happen to display significant Spectrum traits and some of whom have diagnoses.  Back in 1971, her Senior Class's Class Song at Wellesley High School was “Rubber Duckie.”

@sesameworkshop, I Am Your Friend

 This post by Amy Sequenzia is also featured on Autism Women's Network.

And I want to open your eyes. The partnership with Autism Speaks will hurt so many people, you will destroy your own legacy of inclusion.

I know you still don't see it this way. Autism Speaks has mastered the skill of deceit. Autism Speaks uses inclusive language while applying exclusive tactics. Itdeceives and lies. It never apologizes.

You have heard, by now, all the truths about that hateful organization. You have, so far, ignored us.

This tells me that Autism Speaks has already spread its venom. But it does not have to be lethal, you can still recover.

It is easy to guess what Autism Speaks’ people told you.

They said that some "high-functioning" Autistics would complain about the partnership.

They said that "those" Autistics can go to college and work, so they don't really speak for the "severely affected, low-functioning" Autistics.

This should make you very concerned about Autism Speaks. Anyone who uses functioning labels when referring to Autistics, is already showing bigotry and excluding Autistics who need more assistance to navigate the world, like me.

Not to mention ignorance and disinterest: every proud Autistic knows that using functioning labels is a tool of the oppressor, to keep it's perceived superiority.

Another big mistake: we do not claim to speak for all Autistics, but we demand respect for all.

So, you have been fooled by Autism Speaks. I can see the same people who tried to discredit me, and my friends, trying to ease your concerns - I hope you are concerned about the negative message Autism Speaks sends – so Autism Speaks will try to ease your concerns by giving you guarantees that Autistic children will be respected in the show.

I don't believe Autism Speaks is capable of showing respect for Autistics. It never has and actually it doubles down on disrespect with every new initiative.

That’s how the partnership will play out:

Imagine children, Autistic and non-autistic, watching the show and learning that autism is an epidemic, that our families are devastated when they learn we are Autistic, that living with us is so difficult, that we have no future (these are words used by Autism Speaks when it speaks about us).

How to make all children feel included if some children are said to be so bad nobody wants them around?

You will probably say that this language will not be in the show. I will pretend, just for a minute, that this can actually happen. I bet there is some money involved in this partnership, some sponsorship with strings attached, and that’s one reason why I don’t really believe you can decide that. But I am pretending, so maybe the language will not be in the show. Still,Autism Speaks will. They will be the visible link that children and families will have regarding autism. And the dreadful message will reach them anyway. Autism Speaks’ goal is to get the families to donate money to the organization, so it can continue to silence us and demonize our neurology.

The families will donate money to Autism Speaks, because you will be endorsing the organization, as if it has the authority to speak on our behalf, as if it has our best interest in its metaphorical and elusive heart.

It doesn’t. It never has and it has shown, over and over, that its main goal is to rid the world of people like me.

Sesame workshop, we all want autism representation.

We want Autistic characters, autism inclusion andserious conversations about autism.

But you are being played by Autism Speaks, an organization without Autistic representation, an organization that excludes us, an organization that never uses positive words when speaking about Autistics and autism.

Aren't you a little bit curious and interested in listening to us?

Or has the poison Autism Speaks made you drink already changed your character?

You continue to ignore us, hate wins.

Children, Autistic or not, lose

Inclusion loses

Ultimately, everyone loses.

I am a friend, listen to me Sesame Workshop.

It's time to #educatesesame on why Autism Speaks is evil and that Autism is #posAutive

A video  titled "It's time to #educatesesame on why Autism Speaks is evil and that Autism is #posAutive" from Alex McTyre

Newsflash: Autistics Are Individuals (Who Knew?)

Recently, Autism Pride Day passed. I made a facebook status about being proud to be autistic, and I got 15 likes, and two comments. One comment was from my dad, saying he was proud of me, typical parent things. The other comment, which actually preceded the one from my dad, said, “Autism Speaks can suck it.” This typically is how I feel about Autism $peaks.

Sesame Street, on the other hand, is a great show. It’s educational, and promotes diversity. I don’t remember most of the details of the show, but I remember loving it, and I shamelessly follow their tumblr blog to see little clips from episodes, new and old.

The people behind Sesame Street probably think that teaming up with Autism $peaks is an addition to their goal of promoting diversity. However, as plenty of other people posting to this flashblog have probably explained, A$ doesn’t promote diversity; they promote erasure and hate.

As previously mentioned, I am proud of my autism. I am proud of going through all that I’ve gone through to get to the point I’m at today. However, autism wasn’t the obstacle. The obstacle, in this case, has always been the lack of acceptance by others. Those “others” definitely include Autism $peaks and like-minded people.

I don’t want to be cured. I don’t need to be cured. I just want, and need, to be accepted. Some autistics need treatment, and some need services, but a cure is not the answer. I especially don’t want the allistics, or non-autistics, at Autism $peaks to be calling the shots when it comes to our lives. We are individual people. Not all of us can be independent, and not all of us can do the same things that allistic people can, but god dammit, we’re human just like anyone else, and we deserve to be treated as such.

Allistic people do not need speak for autistics. Autism can speak for itself, and I hope Sesame Street supports us in our goal of being heard from our own perspectives.

Skylar Gordon is a 17 year old man from Northern California, more specifically the SF Bay Area. He is an advocate for queer and transgender rights, and is starting to get into the realm of advocating for people with mental health problems and disabilities. He is going to be starting community college in the fall, majoring in Computer Science. Skylar can occasionally be found online at http://dorkily.tumblr.com, or on his new twitter, http://twitter.com/dorkylilelf. 

Dear @SesameWorkshop

Dear @SesameWorkshop,

My son Zachary is 8 years old, he grew up with Sesame Street, loving Elmo, and he knew every word to every episode he ever watched. My son he has Autism. Which is why I am asking you to please reconsider partnering with Autism Speaks.

  Autism Speaks is an organization that cares about money not the Autistic community, which is the exact opposite of what Sesame Street has promoted for years and is why you have been so wildly loved by parents and children alike.  Autism Speaks employees no one with Autism while their hire ups get 6 figure salaries. They have a great marketing plan that show an appearance of helping those with Autism, but in reality, those with Autism and their families see very little of the mass fortune they have amassed.  It speaks volumes that the founder's daughter, Katie Wright, is on the board of directors at the National Autism Association..and not Autism Speaks. Here is one article she wrote for Age of Autism, http://www.ageofautism.com/2014/01/katie-wright-on-autism-speaks-science-department-a-year-in-review.html

 Please reconsider your partnership with Autism Speaks.  There are so many good organizations that could use recognition that are actually helping families.  National Autism Association is just one of them. Autism Speaks does not voice or care for the concerns of children, adult, and families, living with Autism everyday, but they are more than happy to take our donations.  Autism Speaks definitely does no speak for our family.  Awareness is not enough. Everything needs to start with acceptance.

Regards,
Lysa Mulloy