Thursday, April 2, 2015

Red, Blue, and Vera

Trigger/Content Warning (TW/CW): this blog post contains mentions of ableist language.  Reader discretion is advised.

Hey, Vera! Are you wearing blue today for World Autism Awareness Day?

Nah, I'm already aware of autism. I'm autistic, you know.

Yeah, but we got to make other people aware of autism! Show solidarity by wearing blue!
Fresh from a shower!

Umm, my eyes are blue.  Do they count?

No! Come on, Vera! It's an initiative ran by Autism Speaks!

Annnnnnnd that's where you're going to lose me.

Why? What did Autism Speaks do to you?

Funny you should ask.  The question should be, what haven't they done for me?

Well, you don't need services from Autism Speaks, because you can pretty much do everything on your own without help....

Oh? Explain.

Well, you can talk, you can express yourself, you can drive, you can hold a job....well, at one time you held a job. You can do so much when you put your mind to it and so on.

I'm sure you mean that as a compliment, and I thank you for the sentiment.  However, understand that what you just shared, is extremely ableist to me.

Ableist?  Aww, here we go again.

Yes, let's go there again.

It took a long for me to get to where I am today.  Being able to talk, express myself, drive, and hold employment took a lot of energy out of me. My body is not supposed to be able to do all sorts of tricks to please the neurotypical community.  I was able to "pass" as a non-autistic for many years as an act of survival.  My goal was to get out of my parents' house and stay out.  I knew that if I didn't mimic non-autistic folks in speech and behavior, I would be in a group home, just like so many other autistic adults.  I am one of the luckiest son-of-a-bitches in the world to have the ability to do what I do on an everyday basis.

So, Autism Speaks doesn't help folks with autism lead a better life?

Not necessarily.  Their goal is to help families with autistic persons, not autistic persons themselves.  Hell, I'm pretty sure Autism Speaks does not seek input from autistic folks at all.  Here's a glimpse of their website (I scrolled down a bit on their home page because I didn't want to give their founder any face time on my site, and plus "Morning Joe" *shivers*):

From the Autism Speaks website.
Do you see anything there about autistic folks "lighting it up blue"?  Nope. Autism Speaks' focus is to have people focus on autism (by "making them aware") as a disease, a burden on families and communities. And that's is sooooo far from the truth.

First, you can't catch autism. I can't sneeze on you and all of a sudden, boom! you become autistic. That's not how it works. Autism is developed in the fetus and is present at birth. Yeah, I said it: I was born autistic, and I'm pretty sure other autistic folks will tell you the same thing.  No vaccinations altered by brain wave activity. Gluten and casein didn't destroy my thought receptors (note: I was convinced for many years that it was, and therefore I was physiologically "allergic" to them; no real problems with bread and dairy, other than my weight, heh).

And second, autistic folks can "talk".  It's not the stereotypical standard that society is accustomed to.  Autistics can communicate to folks (not a limited list of) by using their mouth, by using sign language, by pointing to letters on an alphabet chart, by typing on a computer, and even by using electronic devices expressing words and phrases with a push of a button.  Not all autistics are the same, but all autistics demand to be treated the same.

Don't believe me?  Here, read this article about the autistic teenager who got pranked during the ALS Ice Bucket Challenge and the punishment given to the ungrateful bastards that pranked him. This whole transgression happened about 20 miles west of where I live, within the same county. I'm guaranteed it will enrage the hell out of you.

Autistic folks are bullied from almost every sector of society, from home to work to academia and abroad. I should know; my first bullies were my own family members. For example, my mother was so ashamed that her youngest child was "retarded" (note: my mother equated "autism" to "retardation" when I was originally diagnosed in the mid-80s), she decided to keep me away from family functions, among other, more actual family-embarrassing reasons.

Wait, didn't you support Autism Speaks once upon a time? And wished you didn't had autism?  What changed?

Fair questions. In 2005, I did discover Autism Speaks, and at the time I was thrilled that there was an organization that addressed the subject of autism. I didn't financially support them, but I did subscribe to their e-mails.  Because I was even questioning my own autism at the time and was completely unaware of what the agenda of Autism Speaks was really like, I did not pay attention to the messages Autism Speaks was sending to folks. It wasn't until 2012, when I discovered an online autistic community through Tumblr that other autistic folks opened my eyes as to what the agenda was for Autism Speaks; to eliminate autism in any and all forms.  At first, I was like, "well, why not eliminate autism? Don't folks want to get rid of autism?" And that's when it was explained to me (in terms that I would describe as left to be desired) that autism is more than just a disability, it is an identity. Disability is an identity, a community. Very much like being born a different race, a different color, a different sexual orientation, or a gender not matching your anatomy, I was born with a different ability.  In the end, instead of hating my autism, I began to accept my autism and love the hell out of it.

And I stopped supporting Autism Speaks at that point. I haven't looked back since.

So, if you are not lighting it up blue, what are you doing to support autism today?

I'm glad you asked.  I'm walking in red.

Me wearing a red shirt for #WalkInRed2015
(my face thought it was funny to sport red as well, heh).
What's the red for?

In my view, it's to show solidarity for autism acceptance worldwide.  Red is a very empowering color; it shows that one means business, kind of like red lipstick or a red tie.

And if you, as an autistic, are not supporting Autism Speaks, then who do you support to help those with autism?

Like, myself?

Yeah.

Well, there are a couple of organizations that I highly recommend, not just because they provide resources for autistic folks and their allies alike, but they are also ran by fellow autistic folks, something that even Autism Speaks can not say about their board of directors.

The first place I recommend is the Autistic Self Advocacy Network. Founded by Ari Ne'eman (a fellow Jew, yay!), ASAN provides support and resources to autistics. And their motto is: "Nothing About Us Without Us," which makes sense because, why establish something for a community when you are not a part of it?  We know how well that worked out when foreign settlers came to the USA in the 18th and 19th centuries and drove out the aboriginal people from their lands, paraphrasing: "take a hike on the Trail of Tears." Let's not let history repeat itself, mmmkay?

Here's a look at the ASAN website:

From the Autistic Self Advocacy Network website.
It's all about empowering autistics to be self advocates for their wellbeing and their lives.

The second place I recommend is the Autism Women's Network.  AWN's goal is to assist (those who identify as) women on the autism spectrum (because that's one of the underserved subgroups in the autistic community) with health resources and a safe space to be understood.

But, I wanna wear bluuuuuuuuuuue!

*sigh* Can't win them all, can I?

Fine, if you're going to do blue, first, don't do it for Autism Speaks, and second, wear royal blue.  Check out the Mocha Autism Network.  They are an organization working to address issues in another underserved autistic community subgroup, those who are autistic and of color.

And, last but certainly not least, in closing:

#BOYCOTTAUTISMSPEAKS :)

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