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:
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