Tuesday, August 2, 2016

On The Death of Suzanne Wright, Co-founder of Autism Speaks

Like so many in the autistic community, I do not condone Autism Speaks; I do not, whatsoever, support them, financially or otherwise, and I no longer share posts pertaining to their "Light It Up Blue" campaign on any social media outlets.  This-past April, I had made quite a few posts on my personal Facebook page, advising kinfolk, friends, and acquaintances alike not to "Light It Up Blue," and go "Red Instead," albeit to not much success.  As my years go by, I will do all in my power to divert people's donations to organizations that have made strides towards autism acceptance and towards including us in the broader community without using language or campaigning tactics that stoke fear, pity, and shame in the hearts of an unfortunate many.

It took me a while, admittedly, to reach this level of comprehension of what harm that Autism Speaks has done for us in the eleven years since its conception.  I watched the 2006 documentary/propaganda film produced by them, Autism Every Day, and my heart did not cease shattering for those innocent autistic children who were, through my lens, exploited for the sheer purpose of garnering pitiful sentiment for their parents, the most intimate details of their daily lives broadcast for the World over to see and absorb as what "autism" is.  It got me to wonder, very much so, where said children are now, and what messages that they had internalized as a result of the constant, negative rhetoric about autism and about being autistic that were spoken aloud by their own parents whilst they were in their presence.

I watched their infamous promotional video from 2009 entitled "I Am Autism," the very video that had demonized and dehumanized autistic people such as myself, my cousins, and some acquaintances of mine.  I wonder where the autistic children and adolescents of that video are now, as well, given that it was nearly a decade since that god-awful production initially aired, only to be removed soon after as a result of pressure from actual autistic people and our allies.

I had read Suzanne Wright's 2013 "Call to Action" proposal that she had delivered in Washington, D.C, as well as her 2014 speech presented at the Vatican.  Both of these speeches contained words that, again, degraded autistic people, reduced their existence to mere caricatures of those in pain with a most-terrible affliction and with little to no emotions or desires, and overall, stirred controversy within the autistic community, as well as among those who unfailingly express their support for us (and often, it is because at least one of their children is one of us-- for supporting their child as they are, I cannot commend them enough).

Much of what Suzanne and her husband, Bob, had said about autism and about autistic people was done so out of their belief that they were doing it in the better interests of their grandson, Christian.  Though I am not a parent, a grandparent, or a caretaker of any sort, I understand quite well that their intent was to alleviate the suffering of those who may have other conditions besides autism that can make life extremely challenging, such as epilepsy, as GI issues, as sensory dysfunction, and the like. 

However, throughout the years, Autism Speaks has conveyed that all of these things are inexorably linked to autism-- when, in fact, they are not.  Scores of autistic people, parents of autistic children, and some professionals have denounced Autism Speaks for its inaccurate, stereotypical, and fear and pity-mongering autism "awareness" initiatives, seeing them for what they truly were: ludicrous.  Autism Speaks, for years, has sought a cure for autism that, realistically, cannot, and will not, happen, not at least without decades of research, billions, possibly trillions of dollars in funding, and not without extensive debates on the bioethics of curing autism, which Autism Speaks has, in the past, characterized not as the lifelong disability that it is, but instead as a debilitating disease akin to HIV/AIDS or cancer.  I am, if it is not within the realm of being obvious, strongly against a cure for autism and an ardent supporter of the neurodiversity paradigm that Autism Speaks and its proponents have time-and-time again denounced as seeing only the "sunshine, rainbows, and unicorns" of autism.

As the news broke of the death of Suzanne Wright as a result of her years' long battle with pancreatic cancer, it seems as if the mainstream media outlets that have picked up on said story have portrayed Mrs.Wright as a martyr of some sort, with supporters of her well-known organization expressing sympathy with her family for her loss.  To die of cancer is devastating, this I cannot and will not deny.  Her kin and her friends have all the right in the World to mourn their loss of her.

Yet, as these stories broke out, on the Facebook page of one media outlet in especial, an autistic adult has stated that Autism Speaks should not be considered as the authoritative voice of autism, and exposed much of what Mrs.Wright has said in the past-- to much support, and to much scorn all the same.  Another comment linked to this August 2014 article written by Amy Sequenzia over on the website of the Autism Women's Network, and a reply to said comment was on the "ridiculousness" of the article written by Sequenzia nearly two years ago.  In essence, many of the reactions to comments such as these were defensive, as so they typically are.

I hold a belief that if Autism Speaks did not have the prominence that it did, it not only would have not molded so much of the public discourse on autism as it has, but that Wright's death would not have made the headlines that it did.  As of recent, another advocate for autism, a woman by the name of Sandy Kinnamon who had worked at the grassroots level, rather than with an organization as large as Autism Speaks, had died.  The forty-five-year-old mother of three was found deceased in an SUV, the cause of her death, at present, unknown (this is one local media outlet's article in the wake of the tragedy). 

Though I am not informed on as to what type of work that Kinnamon had done, from my own reading of the tales of others, she advocated on behalf of her six-year-old autistic daughter and on behalf of all autistic children, adolescents, and adults without using the same negative language that Suzanne Wright had deployed in much of her campaigning, effectively demonizing people much like her own grandson.  Why I say this is not in an attempt to make a contest on as to whose life was supposedly "of greater worth:" rather, I am saddened that because Kinnamon did not have the immense wealth or social status as did Wright,  her death went largely unrecognized outside of disability activist circles and local media outlets. 

I reiterate: to die of cancer is a tragedy, no matter who it is, let alone of the pancreas, one of the most aggressive cancers that exists out there.  Unlike autism, cancer is devastating and needs a cure as humanly as potential.  I have actively witnessed what cancer does to people, and I know well what the Wright family is enduring.

But at once, we cannot allow for an organization such as Autism Speaks to continue to monopolize the conversations on autism, continue to paint autism and autistic people as tragedy cases.  We cannot forget the history of this organization, which has silenced actual people on the autism spectrum and those who are more than willing of what we have to say, has created unnecessary division on the basis of arbitrary "functioning" labels and the need for supports to lead a life as fulfilling and as independent as possible, and has spewed rhetoric about autism so negative that it had actually compelled some parents to murder their autistic children.  We also cannot permit for the deaths of less-recognized advocates to go under the bus and to be unacknowledged, solely because they are not nearly as well-known as are individuals in the likes of Suzanne Wright.

Suzanne, there is a whole community of children, adolescents, and adults just like Christian who would be more than willing to invite him into their lives and provide insight on what it is like to live with an autistic consciousness.  I wish that you had known this more than a decade ago, for if you did, I do not believe that America and beyond would view autism and would view people such as Christian, myself, and many other people who are on the autism spectrum either as nuisances or as objects of pity or of condemnation.  I wish that you had known this more than a decade ago, for if you did, the conversations that we now would be having about autism would look dramatically different than they currently do.

Suzanne, I wish that you had known that Christian and others like him were always, always listening, and that words, like thorns, do indeed hurt.  Even if he could not verbalize his thoughts unto you, still, was he ever listening.  I say this, because I know well that autistic people all over the spectrum have heard and have read your words. and have been affected by them in some manner.  I also know that your words, as I have previously stated, have influenced the public discourse on autism and on autistic people-- and, as many self-advocates would say, these conversations are not for the betterment of Christian's or any other autistic individual's life.

Let us mourn what you did not learn, and hope that many can learn from the major mistakes that you have made while claiming to advocate on behalf of your grandson and on many other autistic people.  Let us mourn the fact that you and your husband had the potential to establish Autism Speaks as an advocacy organization that did not utilize scare tactics, included voices of actual people with the disability, and overall, did not place the stigma surrounding autism in a new package by citing fraudulent statistics that claim how autism allegedly "instigates divorce," yet instead created a behemoth of an organization that, no matter how hard it may try, still fails to completely win the trust of the community that which it purports to be the voice of.

Let us also mourn the death of Sandy Kinnamon, and the substantial loss of her advocacy work in the autism and the broader disability communities, and also ask ourselves why we are not talking about her death.  Let us mourn the fact that somehow, her life and her advocacy work were "worthless" because her social and socioeconomic status paled in comparison to that of Suzanne Wright.