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)
It’s a good thing hidden reviews can still be accessed by their writer, because I forgot what I wrote. Turns out it was short and sweet.
“As a production by the hate group Autism Speaks, this film is hate speech. I don’t think it belongs on Netflix. Autistic people are not burdensome tragedies, they are people.”
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Thank you for sharing your comment, Daniel.
You have to wonder what Netflix hopes to gain by removing criticism. This isn’t the first movie of low quality to ever appear on their service. Surely they realize that many autistic/ally customers are going to unsubscribe because of this.
Ever so true. I refuse to watch it–flat out refuse. (PS–Tuesday the 15th and Wednesday the 16th, not the 17th. Trust me to be the one to catch it.)
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Yes – Don’t! ❤
And… Yay!! Thank you – I will fix that!!
Thanks for sharing. I will make a point to watch now and see
I don’t have netflix so I can’t see or review anything. BUT, I did contact their live chat and had a nice conversation about the situation with one of their customer service people. I don’t know if it made any difference beyond that guy. It might be worth a live-chat visit from people if their reviews aren’t showing up. Because if you’re customers, and your being disrespected, they might listen more than they would with random person like me calling. I’m sure the CS people can’t do much, but if they get a flood of “what happened to my review” stuff, they may be able to make a fuss about it.
((PK)) Beautiful! Thank you!
This is a wonderful idea and way to take further action!
In case anyone else wants to contact Netflix:
Phone: 1 (888) 811-9842
Link to the live chat: https://help.netflix.com/browse/en/132
BOYCOTT AUTISM SPEAKS AND STOP THEM FROM TAKING OUR VOICES ! I am a newly diagnosed 43 year old Aspie… I had no voice so to speak for all my life and now that I have this diagnosis and things are falling into place and making sense , Autism Speaks wants to take my voice away ?! And SHAME on Netflix ! I will never use them again.
Thank You for your time and efforts on behalf of us all.
((Jay)), thank you… There is a growing network of people who are working to make change happen and who are working to signal boost and amplify the voices and perspectives of Autistic people. I feel privileged to be a part of that, and hope that you feel welcomed as well.
Science blogger ToddW saw a screening back in January. Here is his report
“There were positive moments in the film. I agree with the call for insurance reforms and increased support services and awareness education. But there was an awful lot wrong with it. The overall framing of the issues was such that it used negative imagery and fear to try to get its message across. Many of the stories (in particular Katie Wright and Candi and Dan Spitz) would make someone who knows little to nothing about autism terrified of an autism diagnosis. There was a lot of focus on how difficult these families had it. The balance was definitely tilted toward those families who are dealing with the more severe end of the spectrum. I know that autism can be challenging and exhausting for everyone involved, from the autistic person themselves to their parents, siblings, teachers and so on. I get that. But there is so much more beyond the negative, the fear, the tears. When I very briefly caught the filmmaker, John Block, afterward and asked where the film is going from her, he said that it’s mainly going to be at similar venues and “preaching to the choir”, most likely. I got the distinct impression that two groups were seen as the audience for the film: legislators and neurotypical parents of autistic kids.
I would have liked so much more for them to have avoided the negative rhetoric (“autism epidemic”, “autism tsunami”, “crisis”, “medical disaster”, “losing” the child). It’s all the same kind of nonsense we hear from those who blame vaccines for autism. Speaking of which, I’m going to have to think hard about my support of the Lurie Center, if its director seriously gives weight to the idea of the vaccine causation notion. They have a lot of good programs going on, but to hear that from the head of the center? Hmmm…
Another thing that rubbed me the wrong way about it was the employment section. Don’t get me wrong; it was great that they highlighted people who had full time, productive jobs, but the impression was that menial jobs are the only ones available to those with autism. Home Depot, McDonald’s, washing cars? Is that the best that they can hope for? Why did they not include profiles of, say, business analysts at Goldman Sachs? Autism Speaks had an opportunity to show the those with autism could do more than menial, low-wage jobs. Show the range of possibilities. Plus, as Susan Senator states in her post, not everyone can just start up a business focused on employing autistics. It’s an inspiring story, but unrealistic for most of the people who might view this film.
Autism Speaks once again fell into their old habit of using fear and negativity to drive their message. The folks picketing the screening out on the sidewalk have very good reason to be upset with AS. This organization purportedly works to unite everyone affected by autism, but this film seemed more focused on representing the family members who do not have autism than the people who are autistic.”
Netflix has a history of highly questionable documentaries (including one defending pedophilia, no joke -_- ). To me the documentary only succeeded in making AS look bad (I was already fully aware of the lack of services and systematic employment discrimination), but I know to others this will become their point of reference for autism. Really sad. I couldn’t believe they put in the bit about vaccines and failed to even offer the changes in diagnostic practices as a possible explanation (alongside the batshit crazy- BPA? Are we really just going to name random chemicals with no evidence basis to support it?)
Reblogged this on aspielazuli's Blog.
I can’t bring myself to watch sounding the Alarm, but it sounds worse than both Human Centipede films.
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I was extremely shocked and saddened that an “autism acceptance” page I follow on Facebook RECOMMENDED this film, as if they basically said, “Oh, it’s about autism so we’ll tell people to watch it.”
Since you’ve watched this POS film, could you maybe post a transcript for me to respin into something promoting Autism Acceptance? I don’t want to have to watch that thing to be able to rewrite it.
I have a friend who I think did this already. I will check with him if he has competed it and if it is posted somewhere. I really don’t want to watch it again…
I checked and it is not completed. I do understand the the film is now close captioned so perhaps watching and reading with the sound off would be an option.
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Reblogged this on Under Your Radar and commented:
Good heavens. What year are we in, again? It’s just so bizarre to me, that this sort of stuff continues to persist – and get lots of promotion (as well as complicit endorsement by purveyors like Netflix). What to do… what to do…?
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