Friday, February 4, 2011

Autism Speaks: SHUT UP AND LISTEN


I mean you. Right now.

I protested you. You know damn well I protested you. It's not a secret. I wore a shirt that said "Celebrate Neurodiversity", carried a sign that says "Autism Speaks does not speak for me" with your ugly blue puzzle piece all crossed out, talked to parents about why you are so damn toxic. Does that look like a person who wants anything to do with you?

And then you go and quote me?? In your transition kit??? AND YOU GET THE ATTRIBUTION WRONG??? No, I was not fucking diagnosed at 18. I found out at 18 I'd been diagnosed for-freaking-ever. There's a difference. A substantial one. But hey, any misleading thing to try to shut up autistic adults, right?

Oh and there's the whole "Not asking" thing. I know, it was a publicly available work, but it would have been ethical to ask if you could use it, if the context was correct, if I wanted in any way to be associated with you (which I don't. Except protesting you. I'm ok with that, no matter how many of your supporters tell me to go play in traffic--3 was the count this year. Other obscenities rate much higher).

Shut up and listen: this is more talking about us without us. You can't yank a quote--even a good quote--and get the details about that person wrong and just use it when you know damn well they dislike you and all you stand for intensely. That isn't involving autistics, if that's your excuse. That's more of the same thing we've been getting for years, acknowledging us only when convenient.

Shut the hell up and listen.

14 comments:

Autism Speaks said...

Hi Kassiane – we actually did ask whether we could use the quote: the publisher gave us permission. We really liked your quote, it resonated with us and we thought that it would also particularly resonate with parents of individuals on the spectrum who were approaching adulthood.

We may not see eye to eye all the time, but we do hope that you’ll support our efforts to help people with this kit. Our goal with it is simply to help young individuals on the spectrum and their parents successfully navigate a particularly stressful period of their lives.

Neurodivergent K said...

You didn't ask me.

My publisher didn't ask me either; we are going to have Words. It's not exactly a secret that I think your organization is the epitome of suck.

The chapter you excerpted is not about "teach your kid to advocate when you can't make them normal", it's about starting very young and making it part of daily life. That's the antithesis of what your organization stands for! I agree, it was an amazing chapter, but it's not appropriate in the context of what you DO, which is silence and negate the existence of people like me until you can't ignore us any longer.

We don't see eye to eye at all. Pretty much ever. We won't so long as you're parent focused, chasing normal focused, cure focused organization. I detest everything autism weeps has stood for since the first day. It's no secret. It never has been.

As long as you are tragedy-model-of-difference, you and I aren't even looking in the same direction. And I want no part of that. As an autistic person, quite frankly, my view of autism matters more than that of your NT powers that are.

K Bjornstad said...

And they had the audacity to comment on her blog. That's precious.

You should check with your publisher, verify your contract, and then issue a DMCA takedown letter against their ISP. Note that they are illegally copying your copywritten speech. Typically these letters grant up to 48 hours for the takedown to happen, after which you may pursue legal options.

K Bjornstad said...

By the way, if you need a lawyer I can recommend one. The lawyer helped my fiance receive satisfaction regarding AOL-Time Warner.

Neurodivergent K said...

My publisher insists no permission was given. Even though the quote was pulled (supposedly) they may have some Words.

I dislike being lied to as much as I dislike being exploited.

K Bjornstad said...

That's interesting. Let me know if anything else happens.

Jeffrey said...

there are fair use related exceptions to the DMCA. It would be difficult to make a successful claim of infringement that would stick for a simple quotation as they aren't generally copyrightable works in themselves unless particularly long. Defamation of character might be the best you could accuse them of for attributing you in a way you perceive as dishonest or damaging to your reputation. Not going to say you should or shouldn't, just stating things as I believe them to be.

Neurodivergent K said...

Since it was published in a book, it's not DMCA. It's "talk to the publisher". And ethically they should have talked to me AND the publisher. It may not be infringement, legally, but it's unethical as hell.

As it was inaccurate AND trying to make it appear that I support a eugenicist group (namely, them) it was violating as hell. Whether that's illegal or not, again, it's completely unethical.

Lying about my publisher's permission, that may fall under libel/slander, ish.

Cube Angel said...

Kassiane, I just read this and their response. This has brightened my day. Maybe there is some hope. You are not being ignored anymore. This is good news.

Here is more hope. We are not being ignored anymore. If you go out there on the internet you will see that People are making fun of us.

Look at this quote by Mahatma Gahandi. “First they ignore you, then they laugh at you, then they fight you, then you win.”

If Gahandi is right in what he is saying then they especially Autism Speaks is going to try to shut you up and shut you down. They will fight you head on and be like a ferocious lion if you understand my simile.

usethebrainsgodgiveyou said...

Remember when they sent their lawyers after a teen-aged kid who designed a t-shirt mocking them? Funny, eh?

usethebrainsgodgiveyou said...

Haha...go here: http://www.autismspeaks.org/docs/family_services_docs/transition/Self-Advocacy.pdf

and search for Kassiane (Control F). It turns up twice although the page is blank. _Really_ funny stuff!

Forgive me, I'm easily amused...

Neurodivergent K said...

If you ctrl-F then highlight, guess what shows up? OH RIGHT, MY WORK.

It's so funny when they try to out technology us, huh? NOT SNEAKY.

NewtToad said...

LOL!! Awesome. Don't worry. This little stunt only does more to expose Autism Speaks for who they really are.

Ben Belek said...

Hi Kassiane,

I can't find your quote in that pdf you linked to. I guess Autism Speaks deleted it in the meantime.
What quote did they use and in what context did they use it? Do you still have a copy of the original document with your quote on it?