On Tuesday, July 15, I was still editing the comment below for the Autism Speaks docutrauma, Sounding the Alarm: Battling the Autism Epidemic, which is currently on Netflix. My intention was to leave it in the reviews section on Netflix with a one star review… and, to be honest, I was considering doing so without actually watching the film. Messages of fear and negative stigma about my child and other family members and my friends are not high on my list of the media I am eager to consume.
“As a mother of an Autistic teen and a Special Education Teacher, I find this film offensive.
I daily see the impact of the negative stigma spread by Autism Speaks. AS tells my child, my students and their families that Autistic people are a burden, an epidemic, and a tragedy.
I encourage those who view this film to look deeper… because the stigmatizing rhetoric in this film is a part of a constant stream of dehumanization and fear mongering from Autism Speaks and it needs to be ended.
I hope that after watching this, people will be curious to learn more about the experience of being autistic from Autistic people or an organization that includes Autistic people, rather than one that systematically silences them. Situated within disabilities communities, there are a multitude of sources of information that support Autistic people and their families with acceptance, and a strength-based perspective, such as the Autism Women’s Network, ASAN, and Parenting Autistic Children with Love and Acceptance (PACLA)
As an educator and a parent, I implore people to look beyond the limiting stance of Autism Speaks, and I invite them to become a part of the movement working to effectively support Autistic people as a valued part of diversity that is the human experience.”
I had read the other reviews that were being posted on the film and there were about 40, and in my estimate – 35 of them were negative. The reviews that were panning the film listed numbers like 22/22 people found this helpful, or 14/14 found this helpful, and conversely, the reviews that held the film in a favourable light had but 1 or 2 helpful votes.
I was considering a blog post… to get the word out that there were alternatives to this film and to encourage others to do express their concerns.
On Wednesday, July 16, almost all of the negative reviews had been disappeared…
Frankly – I was shocked! Autistic people are used to being silenced and excluded from the conversation by Autism Speaks, but this was not something I expected from Netflix. Go ahead… call me naive.
On Thursday, July 17, my friend, Lei Wiley-Mydske, announced that she was planning to watch the film and live-tweet it… and so I offered to join her.
I also explained to H what I was doing and why, and I invited him to join me. His response was, “Not a freakin’ chance! I’m not watching that crap!”
I am so glad he didn’t. It was far, far worse than I expected… and I hope everyone makes the same choice that H did.
I was grateful to watch the film with Lei, but it was difficult and I cannot recommend not watching Sounding the Alarm strongly enough…
A few weeks have passed, and I feel I am finding my way to write about this. But I must admit afterwards I was shaken, angry, sad, frustrated… reeling! It reminded me how far we have to go to change the widespread stigma promoted by Autism Speaks. They are the big guys here, and they silence Autistic activists and those who care about them by saying they are fringe radicals, or they dismiss Autistic people by throwing around functioning labels as it meets their needs.
I really don’t have the capacity to say much more about this crappy experience, but fortunately I don’t need to because Lei has written an eloquent review of Sounding the Alarm for the Autism Women’s Network which you can find here. ♥ Thank you, Lei!
You can view the Storified version of our live-tweets here.
I will end with Lei’s Netflix review of the film, which is one of the comments that has been deleted:
Horrifying, and not because of Autism, but because of the disrespectful and dehumanizing way that this documentary treats it’s subjects. Autism is NOT a tragedy. Disability is NOT a tragedy. This is really disgusting fear mongering and if you care at all about the dignity and value of your Autistic loved ones, you will not watch this film. Lei Wiley-Mydske
And if anyone else has a comment that was deleted from the Netflix I invite you to leave it in the comments below…
30 Days of Autism is a project designed to fight stigma, promote civil rights, and increase understanding and acceptance for those who process and experience the world differently.
© Leah Kelley, Thirty Days of Autism (2014)