Sunday, September 6, 2015

#AutismUnity


Columnist and autism advocate Steve Silberman recently published a column in the LosAngeles Times, in which he thoroughly criticized the actions of Autism Speaks, accusing the organization of not actually listening to the people they claim to be helping. I recommend reading Silberman's piece. He is a well-spoken advocate, sharing many views with the majority of the Autistic community.

In response, president of Autism Speaks Liz Feld wrote a piece the organization's blog, in which she attempted to refute the allegations made by Silberman, as well as calling for unity in the autism community. Much of the piece was spent seemingly confirming Silberman's criticisms, presenting them as positives. I do not wish to spend this post untangling those, or addressing the half-truths and outright lies embedded in Feld's writing.

Instead, I would like to focus my attention on the community's response to Feld's call for unity. On September 3rd, the organization BoycottAutism Speaks organized a message bombing campaign on Twitter, using the #AutismUnity hashtag, encouraging members of the community to voice their opposition to Autism Speaks' message.

I understand there is a certain irony to promoting unity by shutting out some people from the discussion. The truth of the matter is that no one has done more to leave autistic people and differing points of view out of the discussion about autism that Autism Speaks.

In fact, we do need to promote more unity within the autism community. There are multiple facets of the community, including autistic adults and children, parents, professionals, and researchers. All have something to gain from and offer to each other.

I've felt for a long time that autistic people should be at the forefront of the autism discussion. We're the ones who are being talked about, and it's our futures that are being decided. I feel that many of us can make a difference simply by allying ourselves and talking to parents, as well as becoming role models for autistic children, who will become the next generation of autistic adults.

Almost as important in the discussion as autistic people are parents. Aside from raising us to adulthood, and in some cases, much further, parents tend to learn a lot about the system that is designed to help us function in the world. As such, they learn about many of the problems in the system that many self-advocates are all but unaware of. Communication of these problems is essential to make progress and improve the system.

I would also encourage professionals and researchers to take part in the community. I personally know some professionals who have done this. They appear to come away with a better idea of what autistic people need for our daily lives. It's also much harder to not think of members of your social circle as fully fleshed out human beings, as appears to have traditionally been a problem among researchers.

This kind of unity requires that we abandon the demeaning types of messaging promoted by Autism Speaks. We need to stop thinking of autism as a disease or affliction. There is no room in unity to say that some of us are “barely living.”

It's time to celebrate the diversity that exists within our society. We need to embrace autism as a part of the larger human family. Only then can we create the accommodations necessary for equality.

Let me leave you with a few examples of #AutismUnity from Twitter:

Autism Speaks, stop speaking for people who can already communicate 4 themselves! #AutismUnity means it’s time to sit down and LISTEN!
#AutismUnity means we can't let the vile things Autism Speaks says about us and our neuro-siblings go unchallenged
#AutismUnity: Respect, Dignity & Acceptance for #ActuallyAutistic people, the opposite of what Autism Speaks does to us, without us!
#AutismUnity shouldn't mean erasure. Autism acceptance doesn't mean giving up on learning coping or self care skills. We can do both.
#AutismUnity is sitting with an autistic friend, stimming in sync. Being who we are. Supporting each other. Autism doesn't stop friendships
#AutismUnity is autistic people talking back to @AutismSpeaks, an organization that claims to speak for them. It's time to listen.
#AutismUnity is acceptance, accommodation, celebration of the diverse individuals that make up the autism spectrum. It is not cure culture.
#AutismUnity means listening to Autistic people. We should be leading the conversation about our own lives.

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