Listen to this post: 

I’m wading into very political waters, but that’s something I haven’t been shy about on this blog thus far. There’s a very large campaign happening right now to challenge businesses to stop partnering with an organization called Autism Speaks. I want to share about this campaign with my readers. As with my critique of the “CinemAbility” trailer, I anticipate this post will upset some people. But I choose to post it for one main reason: the autism community members who oppose Autism Speaks do so because they feel they have no voice in the organization.

As a filmmaker, you know by now my main priority is that my films share stories crafted within the communities shown. Films are made by disabled people and show true experiences and perspectives of disabled people. No, not all the perspectives of ALL disabled people. But yes, the ones who are in the films and making the films. Even if the stories make people uncomfortable or seem strange, they are honest.

I hear this organization says they represent a group of people. Yet they don’t involve that group in its leadership, decision-making, or even as recipients of most of their funds. So I’m not happy. The organization presents a grim view that autism is a hideous condition that must be stopped. Many autistic people do not see their lives that way. For instance:

Blogger and activist Beth Ryan explains that, in fact, the hardest part of having an Autistic child is dealing with other people. In her December 4th post on loveexplosions.net, “Why? Why? Why?,” she talks about problems with Autism Speaks.

Author John Elder Robison talks about why he resigned from his advisory roles with the organization in his post from November 11th called “I resign my roles at Autism Speaks.“

Poet and activist Jackie Pilgrim discusses misconceptions around autism and healthcare inequities around race and mentions her personal experiences with the organization on my radio show from December 6th.

The authors in the anthology called “Loud Hands: autistic people, speaking” present countless reasons why the narrative that autism is awful and must be prevented and cured is unjust and most certainly doesn’t represent the community. It also doesn’t take any responsibility for the social, environmental, and attitudinal barriers against people with autism.

As I mentioned on my radio show with Jackie, I am not a journalist. I’m not attempting to present a fair and balanced view of all sides. In this post, I am attempting to share some narratives from people that you might not encounter because they’re not as easy to find as Autism Speaks’ well-funded narratives. But they are out there in enormous numbers.

Here’s the URL for Boycott Autism Speaks, should you wish to read more about their campaign: http://boycottautismspeaks.com. And go to their “Why Boycott” tab to read testimonials from other people about their personal, harmful experiences with the organization.

If you read this post and have the urge to say to me “But, you don’t understand how hard it is to raise a child with autism!”, please know this: I do not know how hard it is to raise a child with autism. I don’t have any children. But there are three things I do know: 1.) my friends and acquaintances with autism are wonderful people whom I genuinely enjoy,  2.) the point is to listen to the experiences of autistic people when talking about autism, and 3.) diversity is marvelous; neurodiversity is diversity, which makes it marvelous.

If you enjoy the stories from professionals, service providers, and researchers in any field around disability or around culture, be sure to also listen to the stories of those people being talked about and studied and their families. You’ll find lots of variety of opinion within and among these groups. Hard as it is, listen.