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Tuesday, January 17, 2012

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Corina Becker

More shame on A$!!!!

codeman38

It looks like they've finally actually removed the quote for real. Not sure when they actually made this change, but I can't find it in the PDF anymore using the search function. I suppose that's some good news, at least...

Still, it honestly surprises me that they would've even done it the way they did originally at all. That shows both a massive failure to understand search engine optimization and a massive failure to understand web accessibility-- the quote was just as visible to a screen-reader user or a user with high-contrast settings as it was to Google.

(And I still do wonder just how long they took to actually fix the PDF...)

Liz Ditz

Codeman is correct, it doesn't appear now at http://www.autismspeaks.org/docs/family_services_docs/transition/Self-Advocacy.pdf.

I didn't check yesterday but I did search on Sunday. I think. It was certainly there on Friday, January 13, 2012.

There's still the matter of an apology to Kassiane.

Kassiane

It was there until late last night.

It's still in hundreds to thousands of hardcopies.

As I keep telling them via email, a public apology (including indicating they understand what they did wrong) would be a start towards amends, but nowhere near a finish.

lhrandall

Autism Speaks' reply to my tweet on this, in which I said it shouldn't have taken a big internet hullaballoo to get them to take Kassiane's quote out of their materials:

"internet hullaballoo? We thought we'd fixed it last year, but hadn't. Simple human error."

Hmm.

Autismspeaks

Hi Liz.

We actually thought we had removed Kassiane's quote a year ago, but unfortunately instead of deleting the text, the person who tried to remove it simply deleted the background on which the white copy sat. End result was that although the text was invisible, it was still technically there, and as you point out, was available to be indexed by search engines.

Nothing more than a simple case of human error. It was rectified as quickly as humanly possible over the holiday weekend, and I have both personally apologized to Kassiane, and reiterated the offer I made to her last year to connect so that I might better understand her feelings towards us

Also, point of clarification: we actually did obtain permission to use her copy from Kassiane's publisher, AAPC.

Thanks,

Kai
Autism Speaks

don't donate to A.S.

"the person who tried to remove it simply deleted the background"....more evidence of the morons who work at A.S. and take millions from ignorant parents each year.

Kassiane

(seems my comment got lost).

No one at AAPC wants to admit that they gave you permission. They wouldn't last year either. Even if they did, how do you fail to see the irony in yoinking an exerpt about self determination, as written by an autistic author, without consulting said autistic author? How do you justify this to yourself? Going over my head to an NT is not acceptable, Mr MacMahon.

Furthermore, y'all haven't exactly impressed me with your technological skills or your honesty. Whitetexting is "harder" than deleting. And sneakier. You're not going to convince me that it wasn't intentional like this. Did you think I wouldn't find out?

Furthermore, nothing was offered last year except passive-aggressive "we wish you'd reconsider, oh insightful one". No offer of a meeting was made. Even if one was, a) I am poor, like most autistics and 2) frankly, you've done nothing to engender my trust.

This non-pology thing, as I said via email (repeatedly now) isn't even a start to making amends. You have associated my words with yourself online for a year, and gods only know how many of the original hardcopy you have sent out.

"I'm sorry but" isn't going to fix it. How are you going to fix it? You have violated me, lied to me, and completely disregarded my wishes, then defended it! A PUBLIC apology in which you make clear you understand your eff up would be a start. It wouldn't be remotely close to a finish.

This kind of behavior is why most autistics, and this autistic in particular, absolutely loathe your organization.

Autismspeaks

Hi Kassiane,

We did get permission from your publisher. I sent you the name person that granted us it last year. More than happy to send it over again if you want.

I'm sorry that you don't believe my explanation. There's not a whole lot I can do about that, I don't think, other than to say that there would be zero benefit to us in us telling you we were going to remove your copy, then intentionally failing to do so. There is no upside for us there. It was an honest mistake, simple as that.

As for it being harder to whitetext... the text was actually white in the first place. What happened was that in the rush to remove you, the background that had sat behind the text was deleted, leaving just the white text on the white background. It was an honest mistake.

My offer to open up a dialog with you, in whatever form you're most comfortable with (in person, on the phone, via skype, email) was absolutely genuine, and still stands.

Kai.

Kassiane

"That Person" is certainly evading me. I do not understand what part of "it's offensive to use something an autistic person wrote *about self determination* without asking them" is so difficult for you to understand. Stop hiding behind AAPC & tell me what made you think that was REMOTELY appropriate.

You DO know an "I'm sorry you feel that way" apology is the opposite of fixing it, right? Y'all owe me a whole lot of butt-kissing right now, given that unlike you, I am not suing for $90,000. Or are you going to deny sending 30 lawyers after a teenager? (file under: reasons you may NEVER use my words).

Why can't you publicly admit you screwed up & demonstrate that you know why your actions a year ago, over the last year, and now are unacceptable? I've yet to see anyone from autspks admit they mess up. Ever. That's not acceptable.

Y'all kind of blew the 'dialogue' opportunity back when you started & wouldn't talk to or email with a single solitary autistic person. I want you to make amends for using my words without my permission (starting with an unqualified apology & indication of understanding of how you messed up, the rest you'll have to figure out). If you can't even figure out how to do that, why should I "dialogue" with you?

Autismspeaks

We are publicly admitting that we screwed up. No argument there: we certainly did that. We're also apologizing: I immediately apologized to you via email over the weekend, and I do so again here.

I'm afraid I don't quite follow your last paragraph: my intention had been to make it clear that I would certainly be open to talking with you about why you feel the way you do about us as an organization. That remains the case. If you don't want to take me up on that then that is of course your right, though my door remains open if you change your mind. I hope you will.

Kassiane

An apology isn't an apology if it's an "I'm sorry you feel that way" apology. They've all been. And as lovely as Liz and her blog are, this is public ish, after you misrepresented me and used my words without MY permission (i.e. went over my head to an NT to use my words *ABOUT. SELF. DETERMINATION*, which is a big deal), you need to-nay, your whole organization needs to, apologize without appended justification just as publicly as you used my words in the first place.

Apology with justification (anything with a 'but') or that is an "I'm sorry you feel that way" is no apology at all. Surely your social skills therapist taught you that?

I'm pretty sure it's no secret why or how I feel about you as an organization, since it's all over my writing, which you clearly can access as you've yoinked stuff from my publications and commented on my blog. And, for that matter, you can probably put together that my blog URL is directed at you and your ilk.

If you don't follow my last paragraph above, there's not a whole lot I can do about that except this:
1. Right after autism every day, your big birth bang, came out, I and at least a dozen other autistics tried to talk to the fledgling organization, only to be ignored or hung up on.

2. If you don't understand what an unqualified apology is, I'm sure your organization can find you a social skills instructor to explain it.

3. I see no need to dialogue with people who cannot understand why stealing my words about self determination without asking me (acknowledging my right to self determination) is a violation. That shows some severe lack of acknowledging even my humanity, & I've been dehumanized enough in my life.

3b. Seriously, your supporters have told me, to my face, to kill myself, in front of the local autism speaks people, who suggested that I get a life. What can you offer me except more abuse and nonpologies?

Amy Caraballo

The tactic of "white text on white background" is a tool that's been around for years to get better search engine listings. I'd wager the web guru at AS knew this full well. Usually these tactics are reserved for less than scrupulous operations (thus why one can search Google for Cat Food and land on a questionable site).

Just one more reason I will not EVER support Autism Speaks. They are right up there with the Wall Street crooks, in my book.

Autismspeaks

Kassiane,

I apologize unreservedly for quoting you in our materials. It should not have happened. I can't go back and change time though, all I can do is let you know that my door is open to you in the event that you want to have a constructive conversation.

kai

Parent

Yeah, "AUTISM SPEAKS" should really learn how to LISTEN, huh?

And they definitely don't "speak" for the parents of children with autism who I know.

Think of this, next time AUTISM SPEAKS is asking you to donate to their organization:

http://www.disabilityscoop.com/2009/09/10/autism-speaks-pay/4893/

"Autism Speaks took in more than $69 million last year, over $600,000 of which was paid to a single executive, recently released tax filings indicate.

The organization’s chief science officer, Geri Dawson, received $669,751 in total compensation in 2008..."

Parent

Almost 670 K! Think of THAT next time they ask you to donate ... or parade your kid around for photo ops ...

Twitchy Woman

Kai - now that you've deleted the offending text, you should notify Google to update their cached version. The offending PDF still shows up on a search for Kassiane + Autism Speaks, and parts of her quote show up in the excerpt under the search entry. It's currently the third result. Moreover, the "whitetexted" version is still what you get when you click "quick view" on that search result.

Google has a procedure for making such requests: http://support.google.com/webmasters/bin/answer.py?hl=en&answer=1091779

I actually had to do the same thing at the organization where I worked; a woman whose address appeared on one of the pleadings hosted on our site became a federal judge and needed to delete her address from all internet listings. It was insufficient to just update the site because the address appeared in google's site previews for those pages.

Autismspeaks

Thanks TW - much appreciated. The request is in :)

Kassiane

*sigh*

So that's the first "we screwed up" without a qualifying "but your publisher saiiiiiiiiiiiid ok" or similar that I've heard from y'all.

Now. Please. Tell me your understanding of why it was wrong, preferably using syntax that is not mine. And then do all that somewhere as public as the PDF. Didn't it get a press release? Maybe a really real apology deserves a press release, especially when you take into account the deception & the length of time it went on.

Y'all need to cleanse the cache, as TwitchyWoman said.

And you still haven't told me what you can offer besides the abuse I (and many of us) get at the hands of your supporters. In front of your regional high muckymucks.Constructive conversation is contentless speech; it doesn't on its own mean anything.

Kassiane

No? We don't want to actually apologize on the same level as the offense? Or demonstrate that you understand that it's unacceptable to yoink an exerpt someone wrote on self determination without acknowledging that author's right to self determination? Or try to say that it was ok even when said author has been told to kill herself by official people from your organization?

Surprised? Me? Not even a little.

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