Thursday, April 6, 2017

William Shatner, Damage Control, and Vera

Trigger/Content Warning (TW/CW): the following blog post contains mentions images of Twitter posts with ableist language. Reader discretion is advised.

This past Sunday was, according to the United Nations, World Autism Awareness Day. For me and a bunch of fellow autistics, it was World Autism Acceptance Day (which, by the way, I contributed to that blog back in 2013). In any event, folks everywhere have showcased their "acknowledgment" that autism exists by sporting blue, taupe, red, purple, and multi-colored attire, banners, and even avatar frames on their own social media profile(s). Yay.

I did find something fascinating at the UN's website page for World Autism Awareness Day for 2017 with their theme on individual autonomy and self-determination. Check this out:
The Convention on the Rights of Persons with Disabilities (CRPD) recognizes the right of persons with disabilities to independence of person and to individual autonomy (article 3). Moreover, the CRPD highlights the right of persons with disabilities to "legal capacity on an equal basis with others and in all aspects of life" (article 12).  
Legal capacity is instrumental to the recognition of a person as a human being of full personhood, with the right to take decisions and enter into contracts. However, certain abilities have often been seen as necessary qualifications for full personal autonomy, creating a barrier to full societal inclusion for people with autism.
I think it's time we took autism awareness to another level: becoming aware of the advances for autistic people and aware of the appreciation humanity has become of autistic folks trying to make this world a better place for all. Like Black History is in February and Women's History is in March, Autistic History should be accepted, appreciated, and celebrated throughout the month of April.

Meanwhile, if folks were not aware about autism before actor William Shatner decided to change his Twitter avatar, or profile photo, to a white light bulb with a white puzzle piece in the center inside a white square frame in front of a light blue background, they are sure as hell are aware of autism now.

The catch phrase, "Light It Up Blue," is an exclusive trademark of Autism Speaks. It is even listed as such on their website.

It would appear to be common sense that if you were to, say, "light it up blue" for autism awareness, then you would be supporting what Autism Speaks is touting: "for greater understanding and acceptance." Looks nice, right?

I further looked into their "Research" tab to see what Autism Speaks is up to nowadays.  I see this thing, called MSSNG. Below is a screen cap of the website's About Us portion:


What's "MSSNG" stand for? Mass Eng for Massive English? Mess Eng for Messy English? Mass Ang for Mass for the Angels? Oh, it's shorthand for "missing." What are we missing here with MSSNG? Is it to imply that autistic folks are missing something? Is it to imply that neurotypical folks are missing the point? And what's this "open science" stuff? Does this mean that an autistic brat, such as myself, can go up and ask Autism Speaks how their research does not involve eugenics? Can I can I, pretty please?

Allow me to make one thing clear though: I, personally, am not a fan of Autism Speaks. In fact, Autism Speaks should be at the losing end of the Boycott, Divest, and Sanction (BDS) Movement, not the State/Land/Country of Israel. However, I digress.

What MSSNG and "Light It Up Blue" both have in common is that they are both affiliated and, in a sense, ran by Autism Speaks. That in turn would make someone, who was sporting the light bulb and puzzle logo, willingly or unwillingly, endorse what Autism Speaks does and doesn't do. This bit of philosophy, however, seems to be lost in translation for one William Shatner, as it was pointed out to him in a massive Twitter row that has been going on now for over four days.

What's even more disheartening is that whenever other Twitter users - including those verified users - decided to jump in and explain to Shatner why some folks got so upset at his display of the Autism Speaks logo, he doubled down on his reasoning for attacking "trolls" as well as "their supporters." Shatner decided to take matters into his own hands and began attempting to discredit Ari Ne'eman, founder of the Autistic Self Advocacy Network; Emily Willingham, writer for Forbes magazine; Slate Outward medicine columnist Daniel Summers; and surgeon Dr. David Gorski, simply because they were asking why the guy who played Captain James T. Kirk on the original Star Trek series was, to paraphrase Mr. Spock (played by Leonard Nimoy, z"l), being "illogical."

Now, the Twitter row has just gotten down right ableist nasty. With Shatner resorting to terms like "cray" to describe someone in response to one of Shatner's tweets, it seems to me that he is the one losing the argument.

I do have a two-part question for you, Mr. Shatner: Do you support Autism Speaks? If so, why? If not, why not?

Why do I oppose Autism Speaks? Because Autism Speaks has a long standing reputation of promoting fear and terror about autism and how it destroys families. Case in point, check out this video Autism Speaks created several years ago, called "I Am Autism."


If that video doesn't promote fear and terror about a simple neurodivergence, being treated as a "disease" (which it is not) that needs a "cure" (which it does not), then I don't know what does. To this day, there are autistic folks who are legit traumatized by this video, simply because it made their caregivers force upon them a view that they had to fit into a specific societal mode. Unfortunately, that mode of living, being exposed to things that the autistic brain and body is not able to handle over time, will cause burnout and development of certain mental diseases like depression, posttraumatic stress, anxiety, bipolar, borderline personality, and even schizophrenia.

You see, Mr. Shatner, most autistic folks, not all but most, actually do not view autism as a disorder or a condition or something that has afflicted them through an external source. In fact, most autistics, including this one, view autism as part of our own identity. I am autistic as I am a white, genderfluid, non-binary, pansexual, female intersexed (I was born a surviving twin due to womb twin loss), and Jewish human being that was made in America with Ukrainian parts.

What have I done, you wonder, to promote a cause or a charity, Mr. Shatner? For one, this blog is my cause: to promote the idea of being able to share their life story of living with complex posttraumatic stress while autistic. This, That, and Vera is a testament to how much I love my identity as an autistic, rather than as a person with autism. Hell, I can adopt a cat and name it Autism and go, "My name is Vera and I have Autism," while pointing to said adopted cat. Another thing is that not only do I support the initiatives of the Autistic Self Advocacy Network and the Autism Women's Network, I also support non-autism related organizations that embody the phrase "justice! justice! justice you will pursue!" Two of those organizations that come to mind immediately are AmeriCorps City Year and Greater Cleveland Congregations.

So, why are so many autistic folks are so proverbially vocal about Autism Speaks? It's videos like that above that perpetuate the thought to caregivers of autistic people, regardless of age, that they are "a burden" and "a shame," so much that some of these caregivers (parents and legal guardians alike) go rogue and end up attempting to or actually succeeding in murdering their autistic loved ones. And what's worse, Mr. Shatner? The media fawns over the parents who commit this infanticide as "people who had to struggle with a loved one who had autism." Well, where's the media coverage of the autistic survivors of these infanticide attempts? Don't they get a say about how they feel, when they hear of how much "of a burden" they are to their families?

In the phrase of a certain Internet meme: do you even think about these things when promoting that "Light It Up Blue" campaign from Autism Speaks? No; you only think about yourself.

And that's why the majority of autistic folks get so upset.

Damage control time, Mr. Shatner. It's time for you to initiate damage control.

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