Monday, June 30, 2014

#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. 

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