Monday, June 30, 2014

From Morénike to @SesameWorkshop



 A child of the '80's, I grew up watching Sesame Street. It was one of few shows that not only strived to make learning fun, but intentionally featured a diverse cast. It was refreshing to see brown faces like my own on Sesame Street. In addition, there were Deaf guests, guests of various ethnic and racial backgrounds, a variety of ages, and different ability levels.

Sesame Street covered multilingualism, multiculturalism, adoption, disability, and more in a tasteful, age-appropriate manner. And the commitment to inclusion and diversity was not limited to the American broadcast of the show; Kami, an adorable HIV+ Sesame Street monster, was introduced several years ago on South Africa's Takalani Sesame.

For these and other reasons, it's easy to see why decades later, as an adult and a parent, I still feel a great deal of nostalgia for Sesame Street.  Which makes it even more painful for me to see that Sesame Street has partnered with Autism Speaks.

Like many others, I applaud Sesame Street's foray into promoting more awareness and acceptance of autism. However, although Autism Speaks is certainly the biggest and most well-known autism "charity" around, it is far from the most representative and most inclusive.

Autism Speaks maintains and spreads an inaccurate, deficits-based view of autism. It hurts autistics, young and old, and it hurts their families and loved ones.  By portraying autism as an "epidemic," using harmful, alarmist rhetoric, and supporting questionable genetic research, Autism Speaks skews the public's understanding of autism and  creates insurmountable barriers for individuals and families in need of substantive, tangible resources to improve their lives.  Furthermore, Autism Speaks' massive wealth is squandered on flashy marketing and padded executive salaries as opposed to investing in vocational training, respite, technology, and many, many other areas where it could be better used.

As an adult autistic, a parent of autistic children, and a concerned taxpayer, I implore you to rethink this disturbing partnership.  By becoming linked to Autism Speaks, you are inadvertently endorsing them as a source for credible and respectful autism information. They already dominate much of the discussion around autism, and through this partnership, you are contributing to their ableist monopoly on autism issues - and thus becoming an accomplice to the silencing of autistic voices and supportive autism families. I urge you to reconsider.

Respectfully,

Morénike Onaiwu

One of Many Reasons to #BoycottAutismSpeaks

 
This is one of many reasons to boycott autism speaks!!!! 


 

To Sesame Street with LOVE

This is a part of today’s #EducateSesame Flashblog.
 
Dear Sesame Street,

You make us feel good. You have always made us feel good. As a child of the 60′s I have watched you lovingly embrace diversity openly. What a refreshing concept it was. Sweet, honest, educational, diversity- authentic entertainment for children. You were one of a kind then and after all of these years, you are still very much one of a kind now. You always seemed to get how to discuss diversity without condescension. I was 8 yrs. old when you arrived on my street with your urban celebration of the world and of life on it’s learning curve. 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.


Why do anything else? Whoever celebrated SAMENESS?

So why are you hearing objections 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. To write this letter I did my own research on the beginnings of your Children’s Television Workshop. 45 yrs. ago I was just happy to watch Sesame Street without questions. NOW, not so much. You were the first to extensively research your audience’s habits and to scientifically harness the “addictive qualities” of television viewing. You purposely set out to research your way into the homes, hearts and minds of families in this manner. You did that, quite successfully.

*From Wikipedia: Sesame Street was the first children’s television program that used a curriculum with clear and measurable outcomes, and was the first to use research in the creation of the show’s design and content.


So what happened? As a company that has succeeded greatly because of extreme 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 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?


It is so uncharacteristic of what we have come to expect on Sesame Street. Especially when it comes to something as important as neurodiversity.


As the mother to a beautifully diverse Autistic teenager and the friend to amazing Autistic people 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. 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 you and your amazing business model to legitimize their “new found” stance of acceptance. They must undo the stigmatic damage they have done to the people on the AutismHWY 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.


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Please do not assist Autism Speaks in spreading information about Autism that does not come from Autistic people themselves. We beg you to not work with a company that is known for excluding the Autistic voice that has so much to offer. We ask that you amplify the Autistic voice and stay true to your original plan of only including and highlighting authenticity on Sesame Street!

Respectfully,
Kelly Green

@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

#EducateSesame, Dear Sesame Street

Written by Ally Grace on Suburban Autistics  

Dear Sesame Street,

I am writing as a long-time admirer of your program.

I live in Australia and I grew up watching Play School, which I feel can be considered as comparable to your program. We have quite different cultures, your country and mine, with different levels of mainstream poverty, different class and racial divides, different welfare systems, different levels of housing, different levels of assistance to vulnerable families, different Child Protective needs and services and experiences, and different education needs and reforms and outcomes.

So, with this in mind, the programs of our two nations, while both aimed at some of our most vulnerable people – children - the programs; they will differ. Play School is also less formal in an educational sense; it educates through play and simplicity and song and stories– again, a reflection on the wider social norms of our prospective countries (and a possible reflection on our different literacy rates and disparity of academic performance through different schools).

I can see though, that both shows aim to entertain, bring joy, be politically correct, avoid offence, change with the times, keep up with changes in children and with needs of children, be educationally savvy, be inclusive, empower parents with guidance and education, contribute to a future that holds joy and success for children, believe in the rights and the potential of all children, and brighten the days of children whose lives could hold all kinds of things to which we are not privy.

Sesame Street is also internationally savvy, which I respect. I also assume in this case, that some cultural research has been conducted. Which leads me to believe that Sesame Street is a highly capable entity.

Play School is an ABC (Australian Broadcasting Corporation) program, seemingly outside of the political arguments and popular trends of other channels and shows, standing as a good quality ethical show for kids no matter the season or social or political climate of its time. I learned a lot about children from Play School. How to speak kindly to children. How the simple things can be the big things. How perfection doesn’t matter. I learned a joy of music and for song, and for lyrics fitted to everyday scenarios. I laughed as presenters humbled themselves and made jokes and silly moves, put paper plate hats on or panted like dogs, crawled like lions or squawked like a cockatoo. Play School even caused a huge controversy in 2004 after showing a little girl with two mothers. The right kind of controversy I suppose; the controversy that happens when you are ahead of your time.

(Some short Play School clips, from youtube). 




I was a child who was not in a particularly happy home. I had enough food and went to school every day. My parents weren’t alcoholics or drug abusers. I learned to read at a normal age and could count and speak. By all measures of the time, I was “fine”. But I did not feel good about myself. I was generally not spoken to with respect. My feelings were not respected and I was not comforted when I needed it. I suffered from emotional abuse and became terrified of stepping on toes. I was plagued by poor adaptability, low levels of creativity, low sense of worth, lack of understanding of self, and a very vulnerable self-perception. Play School showed me that children did deserve to be spoken to with respect. It was the only thing I had to hold up to my own experience; and without it, perhaps I would have blamed myself for abuse even more than I did anyway. Play School made me question the way my caregivers treated my siblings too, as I grew older. Perhaps Play School played a central role in my development of good parenting skills; perhaps I have this simple program run by a government channel, to thank. (Thank you, Play School!).

And so, I suppose I am quite invested in these themes, in things aimed at children, in how we communicate with children, in how children learn about the world. And, probably the most important and most interesting to myself – in how children form opinions about themselves.  About their worth and intrinsic value. About whether they feel that they have an intrinsic value or whether they believe that their value is dependent on certain factors. About how children deal with abuse and not feeling safe. About how children hold secrets of shame deep inside their souls, invisible to the common markers that we use in terms of measuring success and health. About how children gauge themselves based upon others; based upon messages all around. Invisible messages, but ones that can be quite easily decoded by those who take the time to look.

Messages like;

Not showing their own ethnicity in their favourite program, contributing to the othering of this group.

Not showing their own gender in a diverse range of situations, contributing to gender constraints and subconscious limits based upon gender.

Not showing various family situations, contributing to difficulties experienced already by non-conventional kinds of families.


But I am not sure that I really need to explain this notion in greater depth than this. I think, almost certainly, that those who work at and with and on, Sesame Street – are already aware of all of these things. You too, have done some decoding, or at least you have listened to the words of those who have. And this is why I hold your program in such high esteem.

Sesame Street is a trailblazer. It has set such a high standard, that no other programs even really come close to it. It has influenced, in such a positive way, millions of families and children and adults. Vulnerable people have actually been assisted because of Sesame Street.

I am an admirer.                                                                                                                                                   
And I have seen a lot of changes over Sesame Street’s history.

I have four videos here, which I have pulled from youtube. They are simply indicative of some changes that Sesame Street has made in order to fill a gap, address a need, or become more inclusive and reflective of changes in wider society. There are many more that have occurred, because Sesame Street is always changing. They are not particularly notable in themselves, because of the constant flux within Sesame Street as it adapts to new knowledge, new research, and social changes in the wider community.





As an individual, I am also highly interested in social reform, and in the reasons why change often needs to be strangled out of organisations by fed-up people. (Interestingly, Sesame Street has not been one such organisation previously). I am highly interested in the othering that goes on regarding the people who “make a fuss”.  And I wonder what kind of othering is happening regarding this issue right now; this pressing issue of Autism Speaks and the many ways in which they fall short at representing autism, autistic families, and autistic people.

Initially, I simply could not understand how a program like Sesame Street, with its education and its successes and its incredibly progressive attitudes; could continue to support Autism Speaks. And it recently hit me.

This disability issue, is not in the consciousness of many yet.

Disabled people are not seen as being in the same category as other people. (Read: disabled people are seen, subconsciously, as less human than other people).

Race issues and class issues and gender issues, are further ahead on the social continuum than are disabilities.

Maybe the argument has been simplified to something other than what it is. I read in one article that it was a “communication issue” (that article is here). I have read elsewhere that parents whose kids are “mildly autistic” don’t like autism being generalised as difficult. I have even read that people believe the argument is about whether autism is a disability or not. I don’t know why people are assuming these kinds of arguments, but I do know that the real problems with Autism Speaks are nothing like that. Those arguments do not exist; at least, not in my mind.

Progress at present tends to be seen as when people are ‘nice’ to those with disabilities. We still have a long way to go before such people will be valued and respected for who they are. Being nice is not the same thing after all, as being respectful.

We just aren’t there as a society, yet.

Whatever the deeper reasons though; Autism Speaks is not helpful to autistic children. No matter how much these children can or cannot speak. No matter how many friends they do or do not have. No matter how loud noises or bright lights or the swings, annoy or don’t annoy them. No matter how “severe” or how “high functioning” an autistic child is considered as. No matter how many medical issues they may have that complicate their life. No matter what their IQ has been measured as, in a test that neglects to measure many things. No matter what their parents believe about autism. No matter what society believes about autism. No matter what the people behind Autism Speaks believe about autism. And no matter what the people behind Sesame Street believe about autism.  Autism Speaks simply is not helpful to autistic children; and this is not because autistic children do not need help; it is because they don’t need that specific type of help.

It is hardly a new thing to have a minority group misunderstood and unnecessarily repressed by false views and assumptions. It is the pattern of modern history, and we are as much a part of that pattern now as in the past.

This issue of Autism Speaks will influence the way a hugely vulnerable group of people – autistic people – see themselves, and think of themselves, and learn to accept (or not accept) themselves. And it effects how other people see and treat them, too.

Autistic children are more likely to be abused in all areas than are typical children.

They are more likely to be abused during the rest of their lives too.

And the abuse is more likely to be blamed upon them.

These statistics deserve full attention, and they deserve to be addressed.

We all are influenced by the way others see us and treat us. Many autistic adults that I know, echo that their esteem and comfort in their own skin, was heavily and directly influenced by the way they were viewed (and hence treated) by others.

So, if people treated them poorly; like all children generally do, they thought that they deserved it.

To believe oneself innately wrong – could there be anything more pervasively harmful? Could we not consider this issue as important, just as we consider literacy and numeracy to be important? Could it not be put on the radar?

Do we have to wait for statistics to show that autistic children receive messages that they are innately wrong just for existing? Can we not see that this is happening ahead of getting the memo?

I am autistic. I felt unsafe disclosing that at the start of this piece, and that was because I thought that my words would not be taken seriously or read thoroughly if I said it earlier. I wanted to be listened to. The problem with Autism Speaks, is that they actually continue and contribute to, that kind of problem. Why would somebody with something worthy to say, no longer be taken seriously because of neurology? But then, that is what autistic people live with every day. It isn’t right, but it is normal. So now I will say again that I am autistic, and put to you that this piece of information should not be such a loaded statement.

It is why we (autistic individuals) often care so deeply about things like Autism Speaks infiltrating Sesame Street. Because we know how hurtful and harmful and damaging Autism Speaks is, just in their words, policies, and conversations. It clouds every single thing they do, no matter how good their intentions. Whether they are telling society that we ruin marriages because we are awful to live with; or whether they want to access funding for our families (arguable in itself); when you are hateful and dismissive and condescending of an entire population of people – that is going to come through in everything that you do. It is a pervasive attitude. When that kind of attitude lies at the core of an organisation, it no longer matters whether they think they are doing good, or whether they have some positive contributions. It simply becomes unethical to continue to support them.

We live in a world where, thankfully, a great number of autistic people can be heard! We can type out our thoughts and others can read them for instance, like with this flash blog. There is a lot more understanding of autism now, than at any other time in history – and that is mainly because autistic people can be accessed, can be spoken to, can be listened to.  It is not because Autism Speaks has gone around telling everyone that autism exists – that is awareness, not understanding. What our children need, is understanding. Just like what all children need. That need does not diminish because a child or person is autistic. We are 100% human, not despite our autism, but with it.

If we decide that Autism Speaks is unethical and not fit to be involved with our children, we are not then left with no other bodies to fill the autism gap. We can search for other organisations, we can seek input from other people. We can look elsewhere.

And so, I would like to implore you, whomever reads this – please reassess your partnership with Autism Speaks. Please question the needs of autistic children who watch Sesame Street. Please question the messages you will be sending to both the autistic and the non-autistic children who watch Sesame Street. Please consider that one day, these non-autistic children may become parents to autistic children. Please consider the messages you will be sending to parents whose children have been diagnosed with autism, and who are not sure how to discern between information about autism that is received. Please simply consider ethics, with the same means and the same lens as you seem to have done throughout the rest of the history of your program.

Autism Speaks is not the only path to inclusion of autistic children. And autistic children deserve more respectful representation. They deserve a better choice than Autism Speaks.





Above:  Me, in two photographs, pictured with my family. We are Autistic, we are in need of support, and we are deserving of respect.

 

You cannot expect an entire population of people to just sit back and shut up while being repeatedly de-humanised. Please respect our knowledge of ourselves, and respect our feelings about Autism Speaks. I believe that autism is a disability; a disability that deserves respectful representation and respectful support. I believe that not all ways of speaking about disability are equal, and not all are helpful. Autism Speaks has shown many times, that its respect for autistic people is low or maybe non-existent. That kind of organisation would not be accepted for any other minority group – so why autism?


“It’s not whether children learn from television; it’s what children learn from television, because everything that children see on television is teaching them something.”  Joan Canz Cooney, Co-Founder, Sesame Workshop. 

Major Concerns Regarding Your Partnership With Autism Speaks

I'm having some major concerns regarding your partnership with Autism Speaks.
 
I don't know if you are familiar with their campaigns and fundraising
tactics, but just in case you aren't, I highly suggest that you go onto
YouTube and look up the PSA video '' Autism Everyday''. There are a few
other PSA's as well, and frankly I find them very disturbing, downright
discriminatory.
 
The PSA's describe autistic people as kidnapped, missing, empty shells, and the like. As an autistic adult, I personally find them extremly offensive. Being described as ''missing'' is dehumanizing to the experiences of actual autistic people. Autism Speaks has no people on the autism spectrum representing the intrests of autistic people in which we see fit. Why is an organization that calls themselves "Autism Speaks" have no actual autistic people in any of the organizations. There are some autistics in some poistions, though no with any real decision making power. In other words, you might have your " token autistic" write up a blog, but they're only onboard with Autism Speaks as a form of damage control. In other words, AS can say to the public that we include autistics, but really they don't. An organization who claims to speak on our behalf without any autistics leading the conversation doesn't sit well with me. Also, if you want to help autistics, that's great. Though in order for real dialogue to begin, don't you think you should listen to the experiences of autistic people themselves?  For far too long we we're marginalized, vilified, stigmatized, declared either too ''low functioning'' to advocate for ourselves or too ''high functioning'' to really know what having autism is like. Everyone experiences autism differently. It's not a cookie cutter diagnosis. So before I'm finished, I have one thing to ask of you, Is it possible that you can actually talk to actual autistic people and learn about what being autistic means to autistic people, rather than an organization that claims to speak on our behalf, but leaves us out of the conversation? After all, if an organisation calls themselves ''Autism Speaks'', shouldn't the autistics be speaking for ourselves and leading the conversation about autism? Please, Sesame Workshop don't help to stigmatize autistic people even more by partenring with AS. You've always been about supporting diversity. Don't make the mistake of teaching children who watch your show (whether they're autistic or not) that autistic people are less valued members of society and should be feared. Fear and misinformation solves nothing and only creates an endless cycle. Thank you for your time.

Written by Jenn Ramirez

Matthew to @SesameWorkshop

Hi my name is Matthew Vergano. I am a 25 year old male. I was diagnosed with autism at 3 years old. I was non verbal until 5 years old and a regular viewer of Sesame Street in that timeframe. My diagnosis now would be asperger syndrome. Also, I suffer from anxiety.
 
My problems with Autism Speaks are that they treat the people with autism as diseased. There is not a single person with autism working for the organization. I do not like the percent of money which is raised and the low percent of money that actually goes for research. Too much money goes to pay the salaries of the board members. They also portray autistic children and adults as monsters and people with diseased minds and who are out of control. Any way I can help, please tell me. my name is Matthew Vergano.

The harm of us vs them; to @SesameWorkshop

The harm of us vs them; to @SesameWorkshop from Turtle Is A Verb


When I was a child, I wasn't taught about autism. It wasn't a topic spoken about. Not hidden, but not in the public view either.

When I was 13 or so, I was told, that I probably had Asperger's. I wasn't told much, but I was told some. I was given enough that I could research online.
 
What ended up happening, was that I went into neurodiversity. This was a different form of being. There was nothing wrong with me. Some people were like this, and other's weren't and this was fine. But what also ended up happening, was that I said I wasn't disabled, denied my impairments, and pushed away any relation with autism. I wasn't like those people. I couldn't see the association, the relationship, between me and the people who couldn't speak for years, if ever.
 
Eventually, as I grew up, I was able to learn that I am impaired. I was able to learn what my impairments actually are, and I was able to see, wait, this is how I am autistic. And I was able to understand how I'm autistic, someone with a speech delay is autistic, someone with partial speech is autistic, and someone who is nonverbal is autistic. I was able to understand how the traits vary, and yet are so similar, and relate when I read writing by a wide range of people. At this point, its easier for me to relate to someone who's nonverbal than someone who's where I was a decade ago.
 
But, while I'm telling this story, you might wonder, why this is relevant to someone like Sesame Street. This separation. This us vs. them, is harmful, to everyone involved. I didn't have guidance to learn this. I needed to learn it on my own. I needed to learn how I relate to others, while the information I was getting was pushing me in the other direction. The people who cannot speak or take care of themselves are different than those who can and they are different than the "normal" neurotypical people. That's the overarching view of autism information being shared.
 
This us vs. them, ends up leaving people without help. It ended up leaving me without help for years, and I'm struggling to get it now. The years of me thinking I was unimpaired, only "different", I knew, and yet didn't do many things which would have helped because I was separate. I didn't need help like those people in my mind. This left me farther behind when I realized what was actually going on. Now, other's view me in diagnostic stereotypes, because of the us vs them fight going on around me of the same, again, denying me help.
It ends up with people getting abused, mistreated, and fighting a world of stigma. People understandably become unwilling and unable to turn to others, when others are right there. Other's struggle along on their own, never managing half of what they could do if anyone would treat them the same as the others around them. It leaves autism, in a world of its own.
 
Instead of saying autism, all of autism, is a thing, which occurs, a thing which people do need help for, and a thing which isn't a tragedy of burden, it leaves, us, the autistic people. And yes, we're both autistic and people behind.
 
There's one group, at the center of all of this. There's one group, which leads the charge of how autism is a burden to all the families, to the world! And how it doesn't matter if we're trampling autistic people in the charge. There's one group which says that if you're able to speak, you're separate. That groups people, and in doing so takes the voices away from members of all groups.
 
You've probably heard lists of what's wrong with Autism Speaks. The list is long: dehumanizing; spending little money actually on helping families of autistic people (4%); stealing writing from autistic people; the "I am autism" video; not having one autistic member of the board of directors; things like someone in leadership talking about the only thing stopping her from driving off a bridge with her autistic daughter was her neurotypical daughter at home on video; generally denying anything about adults with autism, or our ability to do anything successfully...
 
These all cause pain directly. They also build a culture of fear, hatred, and fighting. People are afraid of those of us who are autistic. Why wouldn't they be, when they're taught that the only thing we are are burdens who are unable to ever contribute to society and who meltdown at the drop of a pin. And people are becoming more and more aware of autism than when I was a child, and not in positive ways. Now autism is a bad thing. It's a bad word. It's an insult.
 
All around autism; there's hostility and fear, in ways that we're needing to unite against in order to try to overcome Autism Speaks. We're needing to try to teach that every person deserves to live. We're needing to try to teach that every person deserves to be able to be treated with respect. We're needing to try to teach, that every person. Everyone, deserves a chance.
 
Teaching about autism is a notable goal. There are many reasons to want to teach children about autism, from classmates growing up, to seeing behaviors that would be pointed out in public. However, teaching about autism should be done in a method that promotes equality. We deserve our voices, whether spoken, typed, or pointed.
Many good things are taught through children's television. This could be one. Autism Speaks, while the biggest name in autism, is one who isn't there for those who are autistic, and is that toxic.
 
Please Sesame Street, do this another way.

We love Sesame Street!!


We love Sesame Street!! Autism Speaks spends most of their money to research a cure. I and many autistic people see themselves as having a neurology which is part of a wide diversity AND a disability. Autistic people need supports, not to be wiped out of the genetic pool. Can you imagine the effect this has on autistic people like my son? This pathology based model also increases the stigma and danger that all autistics unfortunately face. Adding to this are the sensationalistic and fear mongering terms like 'epidemic' that further the stigma and scare parents of newly diagnosed kids. It exploits their confusion and pain and puts them on a road of negativity which often prevents them from seeing their child as perfect how they are and also needing supports, advice about which is not supported by AS. Also, AS has NO AUTISTIC people in higher administrative positions! What message do you think that sends to autistic kids?

Thank you for reading this.

Michelle Lauck

Good evening, @SesameWorkshop--


This post was created by @AspieThink


https://twitter.com/AspieThink/status/482329229590138880

Parenting Autistic Children with Love and Acceptance #EducateSesame Street

 


It has recently been announced that Sesame Street intends to partner with Autism Speaks to create programming for children, which is definitely not a positive move for reducing stigma for Autistic people. Please sign and share this petition urging Sesame Street to reconsider this partnership, in favour of an organization that is inclusive of Autistic people and exclusive of negative stigma.

Autism Speaks tells my child, my students and their families that Autistic people are a burden, an epidemic, and a tragedy. I hope Sesame Street will look deeper… because this needs to be ended. I hope they will shift their partnership to an organization that includes Autistic people and supports them and their families with acceptance, and a strength-based perspective. It is important they end their partnership with Autism Speaks, so that they continue to support and celebrate the diversity that has always been a hallmark of acceptance on Sesame Street.
And what might be an alternative you ask???

There are organizations like The Autism Women’s Network, ASAN, and PACLA, that are run by and/or inclusive of Autistic voice and are working to support Autistic people within a framework of acceptance.


Screen shot 2014-04-13 at 8.10.42 PM



Earlier this spring, PACLA  (Parenting Autistic Children with Love and Acceptance) published the first issue of a wonderful new magazine, which is a beautiful example of what is possible when Autistic people are viewed from a perspective of acceptance that is not seeking to stigmatize disability.

And everybody is reading it.

And it is not expensive.

In fact it is free, and you can get a copy to peruse and enjoy and share with others right here.
The magazine is an informative publication and a much-needed resource: “In this issue, you will read a lot about what acceptance really means. It is intentional, it is a learning process for most of us, and it is absolutely worth it because our Autistic children deserve nothing less.”

Screen shot 2014-04-13 at 8.48.03 PM


And c’mon… everybody and their Frog is reading it!!
KermitReadsPACLAMAG.jpg

And finally… if you haven’t already, please sign and share this petition urging Sesame Street to reconsider their partnership with AS, in favour of an organization that is inclusive of Autistic people and exclusive of negative stigma.

This post was originally published in a slightly different format as: Everybody and their Frog: Parenting Autistic Children with Love and Acceptance. It has been republished in support of the #EducateSesame Flashblog.

Who Speaks for Oscar the Grouch? @SesameWorkshop


When I was growing up as an undiagnosed Autistic, Oscar the grouch was my favorite character on Sesame Street. If you replace the word "Grouch" with Autistic, his life story parallels mine. Oscar the Grouch and I are both lovable and difficult to get along with at the same time. Like me Oscar has unusual and intense interests that keep him happy.
 

 
He also needs regular support from his friends and family. He has days where he just wants to hide in his trash can and tell everyone to scram! The friendly people of Sesame Street are mindful of Oscars needs and include him in their daily life. They never allow him to be alone in his trash can too long. Most people find the word "grouch" to be a bad thing but Oscar wears the Grouch label with pride! Oscar comes from a long line of Grouches with their own Grouch culture and Grouch history.



Grouches even have their own Grouch anthem and Grouch-run organizations where they complain for their Grouchly rights.
 

 
Now what would happen if a new organization called Grouchiness Speaks came to Sesame Street claiming to speak for all Grouches like Oscar? What if the new organization called grouchiness a tragedy and claimed Oscar was a burden to the trash collectors who support him? Would Sesame Street support an organization run by humans for the purpose of finding a way to prevent and cure grouchiness? There would be no Grouches on the board of directors and any Grouches who speak out against it would be silenced or ignored. Only two percent of the budget for Grouchiness Speaks would go towards abusive therapies designed to make Grouches appear less Grouchy. The rest of the budget would pay for advertisements to spread stigma against grouchiness and the padded salaries of the top officials in the organization.

That is exactly what Sesame Street has done by partnering with Autism Speaks.

The Autistic community has united to let Sesame Street know that they should tell Autism Speaks to Scram! Oscar the Grouch would do the same.
 
 
From Katherine Hall at My Life as a Feral Autistic

@sesameworkshop This Autistic Wants to Say


This post, from Amy Sequenzia is also featured on Ollibean.

I have written before.
I sent messages, I tweeted too.
You ignored me.

I am trying again because Sesame Street is very important to me and I have learnt so much from you.

I was alone and nobody believed I could learn. I was called names, and other kids - the ones who could speak, the ones who could move with ease, the ones people said were "normal" - those kids were told to pity me, and stay away.

I was three years old when I learned the letters, numbers and words. I was reading and counting, I was learning because I was watching Sesame Street.

My young mind could not rationalize then, but I understood that Sesame Street was the place where anyone could simply be, including me, silent and uncoordinated. I was valued just as I was.

At the time there wasn't any conversations about, or awareness of, autism. It would have been so great if the younger me had heard about the important and awesome accomplishments the older me was achieving!

The younger me would have grown up knowing that non-speaking Autistics who move in a funny way can also be an important and valuable part of society.

I know you want to spread the message that Autistics belong, like everybody else. You want Autistic kids to feel accepted and included.

But you partnered with Autism Speaks. Your message will not be one of inclusion. It will be one of fear, pity and sadness.

The children watching Sesame Workshop, partnered with Autism Speaks will still learn the ABC's but they will also be receiving the Autism Speaks’ message. A message that says that:

"A" is not for Autistics are Amazing, but for Avoid Autistics.

The "B" they will learn is not for Beautiful minds, but for Beware of autism.

"C" could be for Creativity and Compassion, but the children will learn that Autism Speaks thinks they Cause pain.

The ABC's of this partnership starts like this:

“A is for Avoid,
B for Beware,
C is for Causing pain
That's what autism means to us”…

The young Autistics watching this show will grow up ashamed of being themselves, and their memories of Sesame Street will be traumatic.

The non-autistic children watching the show will learn that Autistics are lesser people, to be pitied and feared, that autism causes our families to suffer.

Sesame Workshop, how can you partner with an organization that wants the world to see autism as a crisis and Autistics as tragedies?

Let us teach all children that autism is:

Amazing - yes we are
Beautiful - like every child is
Community - we are ready to be included
Diversity – what you used to stand for

Experts - we are the ones who can teach you about autism

Please, listen
Respond
Partner with acceptance, not with hate
Don’t ignore us.

#EducateSesame Autism Speaks is a Bully

Original post maybe viewed at http://eccentrickimmy1.blogspot.com/2014/06/educatesesame-autism-speaks-is-bully.html

By now Sesame Street is aware that the Autistic community is unhappy about their partnership with Autism Speaks. Many of us have reached out, but much to our dismay there has been no response from Sesame Street.


I don't think Sesame Street still understands how dangerous their partnership with Autism Speaks is for autistic children and people. I really and truly don't know how to make it more clear to them, but I am going to try.

Sesame Street,  


Remember when Big Bird was given the invitation to the Good Birds Club?

He was so excited to have been invited! So excited that he starts to sing, listing all the ways he is unique and different, while exclaiming he is happy to be just the way he is.

Big Bird shows up to the spot the invitation told him to meet the birds of the Good Birds Club, right away the other birds tell him he doesn't have what it takes to be in their club. They tell him his feet are too big, much bigger than theirs...

As a response to this rejection 
Big Bird asks Abby to use her magic to make his feet smaller, she tells him it's not a good idea, but does it anyway. The birds in the club still reject him, they tell him he is much too big to be in the Good Birds Club.


Once again Big Bird asks Abby to help him out with her magic this time he wants to be smaller. Abby grants his wish. The birds of the club were still not satisfied, and rejected him again, this time for being too yellow. 


He returns to ask Abby to change his color and she does. Of course the birds still found something about him they did not like, his voice... But, fortunately an adult intervenes and lets Big Bird know he was being bullied.


Then the Happy To Be Me club was born. It was an inclusive club that everyone could join, no matter their differences.

(For those interested the video can be found HERE and there is a transcript to the video HERE)


You see, Autism Speaks is Autistic people's Good Birds Club. They tell Autistic people they can't be included in this world unless they change the very core of who they are. Even then it's not good enough for them, they want to rid the world of Autistic people.


Autism Speaks is a bully.

They believe if we are not indistinguishable from our peers we can not possibly live a fulfilling life. 

They exclude us from our own advocacy. Autism Speaks has ZERO Autistic board members and ZERO Autistic people in any position that has decision making power.They do not see us as human, they talk about us without us. 

They send out PSA's that are full of fear mongering and rhetoric:

Autism Speaks claims that Autistic people are lost and that their families are not living , but merely existing.


Autism Speaks compares autism, a different neurological makeup, to diseases like Aids, Cancer and diabetes. 

Autism Speaks sees nothing wrong with a mother wanting to kill herself and her Autistic child, simply because her child is different. (at 6:15)


Why would Sesame Street want to partner with an organization that clearly does not want to include the voices of those they claim to represent?

Why would anyone want to partner with such a hateful, hurtful, bully of an organization that threatens the personhood of those who it claims to represent?

Why wouldn't Sesame Street ask Autistic people to help with this initiative?

Why does Sesame Street think 2 grandparents with HUGE woe-as-me complexes would be better suited to talk about what it's like to be Autistic?


Why? Why? Why?


Image Description: Green/blue boycott logo frames a black chalkboard.
Lower right hand corner has chalk drawings of Big Bird, Grover, Ernie, Bert, Oscar,
Elmo and Cookie Monster from 
Sesame Street with multi colored chalk pieces and white eraser in front.
 Blue/Green Boycott logo in upper left corner with a black letter "S" and white t
ext reads: "S" is for Stigmatized
That's how we feel when words like "burden" "lost" and "broken" are used about us...like Autism Speaks does...#EducateSesame #BoycottAutismSpeaksfacebook.com/boycottautismspeaksnow


I'm old enough to remember when Sesame Street was new.

The following post was written by Bridget Allen of ItsBridgetsWord.com.

I'm old enough to remember when Sesame Street was new. The bulk of my parents' social circle were elementary school teachers. Sesame Street excited them because it excited kids.

 Sesame Street was vibrant. What impressed me was that for generations Sesame Street was almost subversive in its unflinching embrace of love and acceptance. Everyone mattered. Everyone had value.

 Everyone.

The Sesame Street that I saw, for years, seemed to push no agenda other than love, acceptance, and learning.

 For Everyone. Unconditionally.

Sadly, it seems those days are over.

 Now Cookie Monster can't just be himself, he must learn Whole Body Listening ( http://m.youtube.com/watch?v=G6FDts-erVw ), a standard under which many neurodivergent children would find learning impossible; stims suppressed, eye contact constant.
Now, Sesame Street partners with Autism Speaks, an organization that has never represented the interests of autistics. Talk is of creating a character that can be praised for learning to hide their true, autistic self.


 This is not the ideal Sesame Street was founded upon.
Sesame Street is lost, and many of us just want to get (back) to the Sesame Street where everyone belonged.


 Sesame Street is too important to give up on. It's too important to cede over to big money interests like Autism Speaks.


 We care, and we ask you, Sesame, if you want to address something as big as autism, start by turning to those who know autism.


 Autistics.




Open Letter to Sesame Workshop

This post from Kerima Cevik originally Appeared on The Autism Wars.
 

Dear Ms. Betancourt,

I read today that Abby Cadabby and the characters of Sesame Street will be "lighting it up blue" and collaborating with Autism Speaks and my heart broke for my son. I know that as Sesame Workshop’s senior vice president for community and family engagement you may feel you are embarking on a great project. But this is devastating for the thousands of families like mine who used tools already in place that were developed by Sesame Workshop and PBS to help our children learn. I don't know what prompted this partnership but it concerns me very much because the goal of Autism Speaks is to eradicate my son. Left up to Autism Speaks, he would not be alive right now. His degree of disability would mean in their world of medical model based prenatal testing for autism that he would not be acceptable as a perfect baby. So Sesame Workshop will be assisting in the process of increasing the resentment and hatred directed at my son. As if this were not enough, Autism Speaks, who have labeled my son and all children like him some manner of body snatched replacements of  "normal" children, will profit from your brand? I just don't understand.

My son and his peers are given no representation in their organization. His existence is used as some sort of a detriment to society. Autism Speaks continues to present him as someone who should be feared or pitied for who he is.  Sesame characters have always been in the forefront of inclusion and forward thinking. This partnership is a giant step backwards for your wonderful company. Autism Speaks cannot represent my son's interests if they believe he should not even be allowed to exist and be included in society right now as he is. Autism Speaks challenges his foundational human right to exist; this is not inclusion or acceptance of developmental difference. This is an approach to advocacy that makes my son and his peers feel denigrated and ashamed each April. How can your company support propagating this?

Just the statement that your organization  "said it will use Sesame Street’s brand and characters to educate the public about autism and emphasize that kids on the spectrum are much like their typically developing peers" shows a basic lack of understanding that my son and many others like him are not like their typically developing peers. That is the point. That is what needs acceptance from society and representation in society in general and Autism Speaks in particular. My son is not like his"typical" peers. Sometimes people are never "like their typical peers".  I thought that Sesame Workshop, of all organizations would understand that and not work with organizations that insist that those they claim to represent are defective if they are not able to mask their differences. To Autism Speaks, his degree of disability is not acceptable.  I am so beyond disappointed in this turn of events.

I carry the label Black of hispanic origin. I know Sesame Workshop would never promote or support any organization that presented this combination of my racial and ethnic background as something to be feared, repressed, or made to conform to a standard that obliterates my personhood. So why is this okay to do with my son? He cannot conform. He is too divergent. Is he therefore to be erased in society? Should he be made to feel diseased? Please do not be complicit in this.

Sesame Workshop prides itself on its "long history of addressing diversity, acceptance and inclusion". Did you not wonder why autistic activists, other autism organizations and parents weren't included in these negotiations? I hope you will reconsider this partnership. If this announcement had been made after negotiations with a partnership of all autism organizations at least it would have  included representation from my son's real peers, autistic adults who like him, cannot hide their differences, any more than I can hide my racial and ethnic origin.  

Please reconsider this decision. I doubt you'll ever see this letter, but I had to try to reach out for my son's sake before writing Sesame Workshop off as a organization far removed from its founder's original intentions. 

You see, I love my son very much. I'm proud of him. He can't hide who he is. And frankly he shouldn't have to.

Sincerely,

Mrs. Kerima Cevik
Former Sesame Workshop supporter and consumer

#EducateSesame… An Open Letter to @SesameWorkshop from @GreggBeratan



This #EducateSesame
Flashblog is brought to you by the hard workers at #BoycottAutismSpeaks @Boycott_AS:

“The good people at Sesame Street Workshop have made a terrible mistake by partnering with Autism Speaks. Although we assume their intentions are positive, their association with Autism Speaks is downright dangerous for Autistic children, Autistic adults, those that love them, and all people wanting to learn about autism. Sesame Street Workshop educates children around the globe. If the information they use about autism comes from Autism Speaks, it could create detrimental repercussions for generations to come. 

Because Sesame Street has not done it’s due diligence in learning about autism and Autistic culture before entering this partnership with an organization which is currently under protest by the very people it claims to serve, we must take action to #EducateSesame ourselves.”  - Boycott Autism Speaks
*****
The following is an open letter to Sesame Street from Dr. Gregg Beratan, Lead Consultant for Education, ADAPT Rights Group, Mumbai. He is a wealth of knowledge regarding disabilities and alongside writing and research, Gregg shares information daily from news sources in the U.S. and around the world. You can follow Gregg on Twitter @GreggBeratan and I highly recommend it. He’s a valuable resource in the community and I owe him a big thanks for offering to guest post for the Boycott Autism Speaks, Educate Sesame flashblog.
Thank you, Gregg! :)
*****

Dear Sesame Street,
I’m 44 years old, part of the first generation that has never known life without Sesame Street. Whenever I heard the words “Sunny day, sweeping the clouds away…” a smile came across my face. For this reason I probably watched it much longer than was age appropriate. I don’t think I could possibly count the number of lessons I have learned from your show. My favorite teachers growing up were Mr. Hooper, Grover, Linda, Susan, Mr. Snuffleupagus, Kermit and Big Bird. They were effective teachers, and as someone who struggled to learn as a kid, I wasn’t easy to teach.

The lesson they taught more consistently than any other was…
ACCEPTANCE.
On Sesame Street everyone was part of the community, every difference was valued. Difference wasn’t demonized on Sesame Street, it was cherished. For this reason I can’t begin to express how disappointed I was to learn that you had partnered with Autism Speaks.

For the longest time Sesame was the only place I remember seeing disabled people on TV. From Linda Bove teaching us about sign language, Dee Schur teaching about Braille, to disabled kids who have appeared in numerous segments over the years…

Sesame has, for much of its history, been the only place on television where disabled people had any visibility; and not only were they visible they were full, active members of the community.
Your lessons about the value of disabled lives extended well past the actors and kids on your show. I can remember seeing so many skits on disability over the years, from Rosita trying to understand why her father Ricardo has returned from military service using a wheelchair to the wonderful Princess in the low tower which elegantly teaches kids that built environment plays a much bigger role in people’s ability to be a part of the community than any impairment does. Sesame Street has been on the right side of disability issues for as long as I can remember, that is until now and your partnership with Autism Speaks.

I can only guess that you looked at Autism Speaks’s name, prominence and their nonprofit status, and assumed they were a good organization to partner with. If you looked a little more closely you would have seen that they are the antithesis of everything you have stood for over the last 45 years.

Autism Speaks is an organization whose primary message is that autism and Autistic people are to be feared and combated.
You wouldn’t have to look very far to see the contempt they hold for Autistic people. You could take note of the fact that they have no Autistic people serving on their board of directors, or you could listen to the way their founders speak about Autistic people, referring to them as burdens, lying to the world saying their families are not living but merely existing, they paint a portrait of Autistic children as family destroying monsters (and not the good Sesame Street kind of monster). If you looked at these things you would definitely not see an organization worthy of associating with Sesame Street.

As someone who sees himself as neurodivergent (although not Autistic) and as someone with many friends and loved ones who are autistic, I find it disturbing that a show I love, one with such a rich history of promoting acceptance would partner with an organization that has made the eradication of a whole group of people a central focus of its mission. Autism Speaks spends more on their salaries than they do in supporting Autistic children and their families. And if you read any of the information they offer, you might think there is no such thing as an Autistic adult. If you truly want to work with organizations that promote autism acceptance, organizations that can “See amazing in all children” I suggest that you look to the Autistic Self Advocacy Network or The Autism Women’s Network or The Golden Hat Foundation, these organizations understand the value autistic lives add to the world.
Since this partnership was announced Autistic people have written to you, tweeted to you, messaged you on Facebook, tried calling you and their concerns have been dismissed or ignored.
This is not the Sesame Street I grew up with. It is not the show that stood up for acceptance and equality and against fear and hate, the Sesame Street of Mr. Hooper, the one where every member of the community was accepted for who they are. I hope you will reconsider this partnership; Autism Speaks stands for everything Sesame Street has opposed. I still love Sesame Street and everything it has taught me over the years, but right now I am deeply disappointed in you.

Sincerely,

Dr. Gregg D. Beratan