Thoughts on “Blue” Campaigns for Autism “Awareness” Month

Filed Under (Acceptance, Activism) by Estee on 07-04-2013

April 2nd makes me quiet. So many voices, so many people who need to “speak” on behalf of many autistic people – I don’t think that this needs another voice… well, just not on April 2nd “Light it Up Blue” Campaign generated by Autism Speaks. Let me begin by a poignant finding by Paula C. Durbin-Westby in her article: Public Law 109-416 Is Not Just About Scientific Research: Speaking Truth to Power At Interagency Autism Coordinating Committee Meetings (Disability Studies Quarterly). As she sits as one autistic person on the committee to advise the Combating Autism Act agenda, she highlights that,

“in 2008, less than 1%, about $1.6 million of the $127 million total NIMH budget was allocated for services and supports reserach. This one percent, recommended by those who are considered high-level experts on autism, was supposed to cover the following: service delivery, community inclusion issues, transition issues, education, housing, transportation, health care access, and other service related research. By contrast, in 2009, $75 million was allocated to a single cure-related research initiative. The initiative funded? [that is, service initiatives]…”

It is more than clear, it screams, actually (not speaks) that funding priority is given to eradicated autism. Awareness campaigns are not devoted to understanding autism for the acceptance and for services that enable us to live peaceful lives within society. This is why sometimes it’s just not that inspiring for me to write blog posts during the month of April. It is also concerning that we are compelled to react to the Light It Up Blue and other campaigns that have denigrated and devalued autistic lives. As I write “autistic lives,” even, I sit uncomfortably, for it is a definition that tends to essentialize and determine a set of characteristics that are supposed to belong to all autistic individuals. This is difficult for people whose lives are indeed at stake – there is a need to demonstrate that lives have value, and pride movements arise from these need. However, it is important to remember that neuroscience is not at all empirical or objective. It is rooted in philosophy (theroy of mind theory and the like). When I see neuroscience portending to find the eitology of autism, I imagine giving Kant an fMRI machine. I’m not claiming that there is anything necessarily wrong with this curiousity, as long as we acknowledge that it is an human inclination to keep digging inside the body to find what makes us human…autistic people happen to be the targets. Notice how the rates of autism diagnosis always happen to increase right before Autism Awareness Month? The neo-liberal machine is hard a work. The autistic body, experiences “used” by science and then shaped by external “obeservation” – which is in and of itself shaped by a label and a framework named autism) – becomes objectified.

The question about Autism Acceptance Month, a response by people with the autism label to “Autism Awareness Month,” has unique opportunities to not only raise these issues, but to remain flexible. Humans are never fixed. Our knowledge and imaginings constantly transform over time and contexts. Autism is not a new invention and arguably, claimed Inge Mans, mental retardation didn’t exist in the nineteenth century – curious since this was the great age of Confinement for people labeled idiots and the “feeble-minded.” (I recommend C.F. Goodey’s, The History of Intellectual Disability).The language may change (as much as the ever-changing diagnosis’ as in our upcoming DSM V), but it seems that humanity doesn’t. There have always been disabled people and there always will be. The point to is to stay open to the possibilities and if we are going to promote awareness; this awareness of a history of disability, institutionalization, and abuse (of particular concern since ECT (Electric Shock Therapy) is on the rise in Canada and the U.S. for mentally “ill” people and people with autism, notes scholar, A.J. Withers).

There is a need for political action and reaction as well as this campaign for greater awareness and acceptance for what is happening to autistic people in society and why. The funding allocations loudly speak, or express, what Obama might call, “good folks doing not so good things.” (That’s not verbatim…but something like that). A critical inquiry into why we do and how we do it must always be pursued – how can the Autism Acceptance Movement create learning opportunities for folks who do not yet understand the complexities of disability? The medical profession is crossing borders with critical disability inquiry, but we need more. It does not yet understand disability.

The charity-model, using cure campaigns and illness metaphors, misses so many points and needs of many autistic people and families to live peacefully, and equally, in society as autistic people. Many more folks require assistance, services, right to education (which is not yet a given despite legislation), and different kinds of supports – how on earth is a paltry sum going to cut it, unless we are implying that the majority of funds for cure research is intended to cut out autism from society?

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About Me


ESTÉE KLAR

I’m a PhD candidate at York University, Critical Disability Studies, with a multi-disciplinary background in the arts as a curator and writer. I am the Founder of The Autism Acceptance Project (www.taaproject.com), and an enamoured mother of my only son who lives with the autism label. I like to write about our journey, critical issues regarding autism in the area of human rights, law, and social justice, as well as reflexive practices in (auto)ethnographic writing about autism.