What can you say about an advocacy group that loses its only member who is part of the target group they are working for? You would say that group was doing a bad job at working for the people they advocate for. This is now the case with Autism Speaks. For the past few years, John Elder Robison, a man with Asperger’s Syndrome, has been working on the science and treatment boards at Autism Speaks. He resigned just this week. He explains his reasons in this post:
I am not going to summarize what he said because he is capable of speaking for himself, and because he enumerated his issues with Autism Speaks in a succinct manner. I will say this, however: I commend Robison for trying to work with Autism Speaks. Upon hearing about his appointment, I feared he would end up being tokenized(well, he was) and start to tout the Autism Speaks mantra of fear, dehumanization, and stigma. But his post shows otherwise. He went into an organization knowing full well about its PR issues, its issues with allocating funds, and its general unwillingness to listen to the voices of autistic people. It makes me upset that Robison could work for an organization that targets a population which he is a member of and not take anything he tried to say or do with the legitimacy it deserved. From his post, it appears that he spent a great deal of time being frustrated with them and their inability to listen to him. In my eyes, he chose the perfect reason and time to sever ties with Autism Speaks. (For the post Robison is referring to, here’s the link: http://www.autismspeaks.org/news/news-item/autism-speaks-washington-call-action)
For him to see a post like this, after working with that organization for that long a period of time, must have been completely infuriating. It’s infuriating to me, and I don’t even work for the organization. For it to be 2013 and to have one of the founders of the largest autism organization worldwide to call us autistics public health crises, the cause of families breaking up, and consider us general burdens to society is disgusting. This type of rhetoric has no place in 21st Century dialogue. No wonder why so many autistic people think Autism Speaks is evil. Look at what they’re saying about us! For Robison to stay on as long as he did shows that he has more patience than almost anybody I can think of!
Oh, and I find it funny how the science world believes we lack empathy. That we can’t understand what other people are thinking or that we are not considerate of other people’s feelings. So many believe that autistic people’s primary deficit is being unable to understand others and empathize with them. But, even after all of the pushback Autism Speaks has faced from autistic people, whether it be after the “Autism Every Day” incident, or the pushback after the release of the “I Am Autism” video, they still use the same exact scare tactics they used before to promote their organization. It’s as if they’ve learned nothing over the past few years. They have learned nothing about how autistic people feel when they are called public health crises, diseased, defective, etc. They have learned nothing about how to work with autistic individuals in developing the best solutions for mitigating disability and creating a more equitable society for everybody, autistic and neurotypical alike. They have learned nothing about advocacy as a whole. I think we all now know who really lacks empathy…
So, now that Autism Speaks’ only autistic member is gone, the organization can no longer make any claim whatsoever, that they are inclusive. They have gone back to being 100% against the disability rights’ movement’s mantra: “Nothing about us, without us!” Finally, they have thrown away any possibility of being able to have a dialogue with autistic individuals about how to improve our lives.
Are you listening now, Autism Speaks? I doubt it. So, you can go on with your fear-mongering, your dehumanization, and your ignorance. We’ll move on without you.
“If you won’t listen to reason, there’s always…Towanda.”