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.
Mrs. Kerima Cevik
Former Sesame Workshop supporter and consumer