I Speak of Dreams

Are You a Dyslexic Adult About to Take A Standardized Exam? DRA Wants to Hear From You!

Disability Rights Advocates (DRA), a non profit legal center located in Berkeley, CA is seeking stories from individuals concerning issues of retesting on high-stakes graduate tests. If you have taken or will take standardized tests (LSAT, GMAT, and MCAT), DRA is interested in speaking with you.

Watch the PSA below, featuring Ben Foss

The 2 1/2 minute film below introduces DRA and Ben Foss

 

If you just want to cut to the chase: http://www.dralegal.org/cases/education_testing/exit_exam_surveys/lsat-sat/

Cross posted at Academic Remediation

Changing the French Approach to Autism

David Heurtevent is a 32 year-old autistic self-advocate from France, and is a spokesperson for “Support the Wall – Autism : Help Stop Abuse of Autistics in France Now” (in French, Soutenons le Mur)

January 17, 2012: Wrong Planet published an article  by David:  Autism in France: Psychoanalysis, Packing, and Other Travesties: Why it Matters

Selected quotes:

Unlike most modern countries, the Autism Spectrum in France is viewed as a disease that can and should be cured. The dark-ages culture of neglect and abuse remains extremely strong.

The documentary The Wall or Psychoanalysis Put to the Test for Autism reveals how outdated theories haunt Autism there.

 January 19, 2012  in the New York Times: A French Film Takes Issue With the Psychoanalytic Approach to Autism  

PARIS — “Le Mur,” or “The Wall,” a small documentary film about autism released online last year, might normally not have attracted much attention.

But an effort by French psychoanalysts to keep it from public eyes has helped to make it into a minor cause and shone a spotlight on the way children in France are treated for mental health problems.

The documentary, the first film by Sophie Robert, follows two autistic boys: Guillaume, who has been treated with the behavioral, or “American,” approach; and Julien, who has been kept in an asylum for six years and treated with psychoanalysis. Guillaume, though challenged, is functioning at a high level in school. Julien is essentially silent, locked out of society.

January 20, 2012: Thinking Person's Guide to Autism  published A Culture of Abuse: Autism Care in France.

Many of you readers who are not citizens of France may wonder why you should care about autism in France, and why I am inviting you today to help we French address the problems with autism in France. 

My belief is that the “moral duty to intervene” exists. In France, Human Rights infringements for autistic people are severe and persistent enough to mandate foreign intervention in the debate.

 January 26, 2012: Sophie Robert and David Heurtevent will give a press conference in English in New York City. Sophie Robert will discuss the court decision and David will launch an international campaign to stop abuse of autistics in France.

Bay Areaistas: Great Music for a Great Cause: February 11 2012

Talisman is a wonderful Stanford a cappella group: 

Talisman was created to explore and perform substantive, cultural music. This has become our mantra as we strive to give voice to the vast collection of human stories told through rich and vibrant song. We appreciate the great challenge of responsibly engaging with the genuine roots of the songs we sing, and are committed to bringing these songs to life as best our abilities allow...

On February 11 at 7 pm in Redwood City, Talisman is giving a benefit concert for Wings Learning Center:

Wings Learning Center was created to address the academic and social needs of children with autism and communication disorders, making it possible for them to interact, learn and live with typically developing children.

Respect for each child’s learning differences is the cornerstone of our philosophy.

Tickets are $20.00 online ($15.00 for children and seniors) and at the door.  

If you would like a preview of Talisman:

 

 

More at Talisman's YouTube channel

Buy your tickets today!

The Importance of Word Choice: Terms with multiple meanings for scientists and the public « Southern Fried Science

Yes, more tidbits prompted by #scio12.

The Importance of Word Choice: Terms with multiple meanings for scientists and the public « Southern Fried Science.

If you haven’t seen the excellent post on Mountain Beltway - Words matter – you should head over there and take a look. The post brought up some interesting ideas about word choice, and how the common definition of a word may convey a different meaning than the scientific definition. For science communicators, this may lead to confusion and misunderstanding between you and your audience. 

I presented this table to my Science and Nature Writing class this morning and asked my students to come up with other terms that may also have multiple, opposing meanings. This impressive list is what they produced:

Apple's iBooks Author hands-on -- Engadget

NOT a #scio12 post.  I'm excited by this but the bolded phrase might be a deal-breaker.

Apple's iBooks Author hands-on -- Engadget.

Apple confirmed to us that you can publish classroom materials for free and that each book will be approved in the same way that the App store approvals process works. Copyrighted works (if you utilize any) will have to be strictly cited and referenced in order to pass muster. You'll be able to publish books for free, all the way up to $14.99: with a fixed profit-share model of 70/30 between yourself and Cupertino. Most importantly of all, any book that you publish must be an exclusive to iBooks.

Tools for Writers’ Workflow, ScienceOnline 2012

Yes, this is just a hint.  I am so envious of the folk at #Scio12

The Further Adventures of Germ Girl | Tools for Writers’ Workflow, ScienceOnline 2012.

Here’s a list of tools and programs that were recommended by speakers (David Dobbs, Brian Switek and me) and by the collected wisdom of the audience in the Tools & Tips for Project Workflow session at ScienceOnline 2012 this morning:

The Logical conclusions of personhood arguments

Dr. Hern is a ob-gyn who is one of the very few physicians who specialize in late-term abortions for fetal disorders.  It's a real need in women's reproductive health, and I am grateful that Dr. Hern is still in practice.  I remember and mourn George Tiller.  is always a heartbreaker.

Dr. Hern has  published an essay on logical conclusions of "life begins at conception" legislation[pdf for download]  It's a must-read.

 

This Is What You Would Read On My Blog If SOPA or PIPA Passes

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

https://www.eff.org/deeplinks/2012/01/how-pipa-and-sopa-violate-white-house-principles-supporting-free-speech

 

 

 http://www.stopthewall.us/?gclid=CP6pzJvu2K0CFQ9qhwodEDP5mw

 

https://wikimediafoundation.org/wiki/SOPA/Blackoutpage 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Stop SOPA and PIPA

I couldn't figure out how to make my blog go dark.  I'm not very handy with the html and all. 

Of all the things I have read about SOPA/PIPA, I thought O'Reilly's was the most cogent

SOPA and PIPA are bad industrial policy

The solution to piracy must be a market solution, not a government intervention.

by Tim O'Reilly | @timoreilly | +Tim O'Reilly | Comments: 9 | 16 January 2012

This post originally appeared in Tim O'Reilly's Google+ feed.

There are many arguments against SOPA and PIPA that are based on the potential harm they will do to the Internet. (There's a comprehensive outline of those arguments here.) At O'Reilly, we argue that they are also bad for the content industries that have proposed them, and bad industrial policy as a whole.

The term "piracy" implies that the wide availability of unauthorized copies of copyrighted content is the result of bad actors preying on the legitimate market. But history teaches us that it is primarily a result of market failure, the unwillingness or inability of existing companies to provide their product at a price or in a manner that potential customers want. In the 19th century, British authors like Charles Dickens and Anthony Trollope railed against piracy by American publishers, who republished their works by re-typesetting "early sheets" obtained by whatever method possible. Sometimes these works were authorized, sometimes not. In an 1862 letter to the Athenaeum, Fletcher Harper, co-founder of American publisher Harper Brothers, writing in reply to Anthony Trollope's complaint that his company had published an unauthorized edition of Trollope's novel Orley Farm,noted:

"In the absence of an international copyright, a system has grown up in this country which though it may not be perfect still secures to authors more money than any other system that can be devised in the present state of the law.... We cannot consent to its overthrow till some better plan shall have been devised."

America went on to become the largest market in the world for copyrighted content.

That is exactly the situation today. At O'Reilly, we have published ebooks DRM-free for the better part of two decades. We've watched the growth of this market from its halting early stages to its robust growth today. More than half of our ebook sales now come from overseas, in markets we were completely unable to serve in print. While our books appear widely on unauthorized download sites, our legitimate sales are exploding. The greatest force in reporting unauthorized copies to us is our customers, who value what we do and want us to succeed. Yes, there is piracy, but our embrace of the internet's unparalleled ability to reach new customers "though it may not be perfect still secures to authors more money than any other system that can be devised."

The solution to piracy must be a market solution, not a government intervention, especially not one as ill-targeted as SOPA and PIPA. We already have laws that prohibit unauthorized resale of copyrighted material, and forward-looking content providers are developing products, business models, pricing, and channels that can and will eventually drive pirates out of business by making content readily available at a price consumers want to pay, and that ends up growing the market.

Policies designed to protect industry players who are unwilling or unable to address unmet market needs are always bad policies. They retard the growth of new business models, and prop up inefficient companies. But in the end, they don't even help the companies they try to protect. Because those companies are trying to preserve old business models and pricing power rather than trying to reach new customers, they ultimately cede the market not to pirates but to legitimate players who have more fully embraced the new opportunity. We've already seen this story play out in the success of Apple and Amazon. While the existing music companies were focused on fighting file sharing, Apple went on to provide a compelling new way to buy and enjoy music, and became the largest music retailer in the world. While book publishers have been fighting the imagined threat of piracy, Amazon, not pirates, has become the biggest threat to their business by offering authors an alternative way to reach the market without recourse to their former gatekeepers.

Hollywood too, has a history of fighting technologies, such as the VCR, which developed into a larger market than the one the industry was originally trying to protect.

In short, SOPA and PIPA not only harm the internet, they support existing content companies in their attempt to hold back innovative business models that will actually grow the market and deliver new value to consumers.

See comments and join the conversation about this topic at Google+.

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: