When National Charities Offend Those They Are Supposed To Serve

Suppose you are an adult with a particular disability.  There are a number of national  organizations and charities whose mission is  to support your particular disability, but one is dominant, with an annual budget of over $50 million and a massive grass-roots fundraising campaign, with dozens of walks across the country engaging tens of thousands of volunteers.  However, you (and many other adults with this disability) have profound and  irreconcilable ethical and philosophical differences with the organization's mission and goals.

Suppose further that you are an author, and this organization, without your permission, has used a passage from your published works in one of their copyrighted publications.  When you ask the organization to remove the passage, they ...don't really comply.

Now what can you do?

This is exactly the situation that Kassiane finds herself with respect to Autism Speaks. Early in 2011, Autism Speaks published an on-line "transition tool kit", for autistics moving from school into adulthood.  The first page of the 10-page section on self-advocacy featured a quote from Kassiane's 2004 essay, "Help Me Help Myself: Teaching and Learning Self-Advocacy", which was published as a chapter in  Ask and Tell: Self-Advocacy and Disclosure for People on the Autism Spectrum, published by the Autism Asperger Publishing Company (AAPC). (The quoted passage is at the bottom of this post.)

In Februrary 2011 Kassiane discovered the quote. She was deeply offended:

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. 

An Autism Speaks spokesperson (unidentified in the comment) responded:

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.

 Kassiane investigated, and found that:

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

At some point after February 4, 2011,  the quote disappeared from the page.  All that white space is where the quote appeared (as always, click to embiggen):

But, well, not quite. On January 14, 2012,  A commenter wrote:

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!

Kassiane protested and called for help:

I responded, and sure enough, when you follow the commenter's instructions above, there it is.  All Autism Speaks did was to make the type for Kassiane's quote the same color (white) as the background.  

Here is an organization with a $50 million dollar budget, and they couldn't be bothered to re-format a 10-page PDF.  It would probably take all of 15 minutes to do it correctly.

But why does Kassiane care?  After all, the words are gone, aren't they?  Well, the words are invisible to humans, but not to web-crawlers.  If you search for the name Kassiane is referred to on the PDF, you find that the third entry is Autism Speaks' PDF:

Even worse, if you search for Kassiane + "Autism Speaks" it's the fifth entry:

In case you need a visual of how Kassiane feels about Autism Speaks:

What should Autism Speaks do?

1. Take down the PDF, edit it so that Kassiane's words and bio are gone, and repost
2. Apologize to Kassiane for the careless way they managed the event.

 

Backstory for those who don't understand why Kassiane and many other autistic adults revile Autism Speaks, 

In 2005, Autism Speaks was founded, and quickly grew to a position of dominance, first by its fund-raising prowess (raising $30 million in its first nine months) and second by absorbing two other organizations, the National Alliance for Autism Research (NAAR) and Cure Autism Now (CAN).  

Protests against Autism Speaks began early in the organization's life.  In 2006, it released the infamous documentary "Autism Every Day".  Protest began as soon as the film was released, from autism parents like Mike Stanton and an international petition "Autism Speaks: Don't Speak for Us". 

Many autistics spoke in criticism of Autism Speaks' policies and beliefs, for example: Cal Montgomery at Ragged Edge Autistics Speak (December 16,  2005) Amanda Baggs Exactly Who Is Unresponsive Here? (May 16, 2006) Autism Speaks/GRASP “articles of understanding” October 26, 2006;  Michelle Dawson Autism Every Day's Harsh Realities (January 21, 2007) ABFH on "Autism Speaks' Poisonous Ideas" (July 31, 2006) "Autism Speaks Campaign of Hate Speech" (August 20, 2007)  "Autism Speaks Eugenic Agenda" (October 22, 2007) "Ransom Notes and Autism Speaks: Partners in Crime" (December 2007) "Eradicate Autism Speaks" (November 13, 2009).

The Autistic Self-Advocacy Network (ASAN)  was founded in November of 2006, and spent its first year building organizational capacity.  In September, 2009, Autism Speaks released another offensive "awareness" video, I Am Autism (see here for a round-up of responses and here for another roundup)  This prompted ASAN  to: write a letter of protest to Autism Speaks' sponsors, donors, and supporters;   organize a petition drive; and organize  a series of protests at various Autism Speaks fundraising events, for example: Ohio Washington DC Boston Portland OR and New York City. 

More recently, ASAN chapters have protested at Autism Speaks fundraising events: 

On Sunday, October 9 [2011], ASAN chapters in Central Ohio and Sacramento protested the Autism Speaks Walk Now for Autism events, with fifteen Autistic individuals and cross-disability allies protesting at the Ohio State campus and five individuals protesting in Sacramento. Protesters at both events emphasized the disparities in Autism Speaks finances. Of just over $10 million given in grants in 2010, Autism Speaks gave barely $50,000 to family services, with the rest of the grants going to research, the bulk of which is research seeking a "cure" for autism rather than applied research that seeks to improve problems facing Autistic people now. Other criticisms cited last year's over $2.5 million spent in salaries for its top-level officers and directors alone (and over $13 million in salaries total), and Autism Speaks's consistent failure to ensure meaningful representation of Autistic people in their leadership either locally or nationally. 

Kassiane's "whited out" quote and bio in the Autism Speaks PDF:

"One thing autistics and parents of autistics agree upon is the desire for independence. Many skills are taught in an effort to achieve this goal, but one of the most important is consistently neglected. This skill is called self-advocacy.

Self-advocacy is the process by which we get our wants and needs met. If we are to be independent, we have to advocate for ourselves. In spite of this blatant truth, few parents and professionals think to teach advocacy. They do not teach advocacy mainly out of ignorance – it does not occur to them that a person on the spectrum needs to be shown how. But the truth of the matter is that we do not naturally learn how to get our needs met the way typical children do. There are several reasons why autistic people tend to have poor self-advocacy skills. First, we do not learn social patterns well, and self-advocacy is a social process. While most neurotypical population learns to ask for things by imitation, autistics need explicit instructions. Well-meaning adults often contribute to the problem in childhood by doing for us what we should be taught to do for ourselves, resulting in learned dependence because we do not practice the techniques of advocacy ourselves. The autistic theory-of-mind difference also contributes to our lack of self-advocacy skills. “I know what I need; therefore, so does everyone else.” "

- Help Me Help Myself: Teaching and Learning Self-Advocacy, by Kassiane Sibley from Ask and Tell: Self-Advocacy and Disclosure for People on the Autism Spectrum, edited by Stephen M. Shore.

*Kassiane Alexandra Sibley is an independent young adult and like many Aspies her age, she was improperly diagnosed before discovering autism spectrum at the age of 18. 

The bio appears to be a careless editing of her 2004 bio on Amazon for Ask and Tell:

 

 

Comments

[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.