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: https://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:
In case you need a visual of how Kassiane feels about Autism Speaks:
What should Autism Speaks do?
- Take down the PDF, edit it so that Kassiane's words and bio are gone, and repost
- 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 , 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: