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!!!! 

 

Sacramento walk is sponsored by 5150 energy drink.. http://en.m.wikipedia.org/wiki/5150_(involuntary_psychiatric_hold)

 

Its distasteful and just wrong. It's not just that autistic people are given a 5150. The media and our culture nearly always blames autism when a tragedy (read: murder) happens. Also, there's already enough stigma surrounding mental illness in this country.  The fact that they're sponsored by an energy drink company who perpetuates that stigma by making light of involuntary psychiatric hold is disgusting. -Celeste

 

 

 

 

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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.

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.

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). 

One Grey Elephant.

The Ning Nang Nong.

Pick the Odd One Out.

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.

What is othering?

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.

Cookie Monster, on "important".

Abby Cadabby, singing about broccoli.

Original Sesame Street opening.

Recent Sesame Street opening.

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.