Tuesday, November 12, 2013

Autism Speaks Kidnaps "Policy Summit"

"This is autism.
Life is lived moment-to-moment.  In anticipation of the child’s next move.  In despair.  In fear of the future.  
This is autism."
-by Autism $peaks, recycling their embarrassing 2009 "I Am Autism" video .

Autism Speaks!!! " 'This is autism'?" NO. This is ableism. This is fearmongering. This is appalling. This is Autism $peaks." - David K. March, Autistic Adult


Be scared. Be VERY scared, because Autism $peaks is coming to Washington, and they have not changed their tune a bit. But now, Autism Speaks has ratcheted its operations up a bit and wants to singlehandedly mastermind a “national plan” for autism, one that still does not include Autistics at the decisionmaking table. Their slogan is “Autism Speaks to Washington.” It is neither “autism” nor Autistics who are doing the speaking, though. Invitees to this national-level-but-with-no-Autistics-summit are policymakers, researchers, “experts on autism,” members of Congress. Not one Autistic person has been publicly named as a participant in this “policy summit” in a leadership capacity, although I imagine A$ will be strategic and permit a few Autistics who want to be cured (or who want other Autistics to be cured, to be on display or to say a few words about the “national crisis” of autism.

BREAKING NEWS: John Elder Robison has resigned his roles with Autism Speaks. In a letter to the president of AS, he stated: "Autism Speaks says it’s the advocacy group for people with autism and their families.  It’s not, despite having had many chances to become that voice.  Autism Speaks is the only major medical or mental health nonprofit whose legitimacy is constantly challenged by a large percentage of the people affected by the condition they target." Many Autistics and others have viewed John's role at Autism Speaks as "token Autistic."  Despite all the negative images that portrayal might bring up, it has largely been true, and I am glad to see that he has finally tired of that unrewarding role.  I resign my roles at Autism Speaks
I would like to personally and publicly thank John Elder Robison for resigning from an organization that consistently "represents" us as damaged beyond repair and our families as "victims, waiting for our next move."

TWO INITIATIVES TO COUNTER THIS "SUMMIT" ARE BELOW. PLEASE JOIN AND MAKE YOUR VIEWS KNOWN.  One is a protest at the site of the "summit," and the other is a phone call and letter-writing campaign to Congress. DETAILS BELOW.

Autistics are concerned and dismayed that this rather powerful organization is presuming to “speak for” us. Our family members, yes, that’s right, non-autistic parents and caregivers, are concerned about the language of fear and pity about autism, a language that makes it harder for them to gain acceptance, and thus supports and services for their loved ones.

Now, Autism $peaks wants to corner the market on state and federal “autism advocacy” including barriers to housing for Autistics, which makes one wonder about A$’s plans for segregated housing for Autistics. Using some of Autism Speaks’ own phraseology, “Close your eyes and think about an America where three million Americans are living in segregated housing owned by Autism Speaks and its affiliates.” Scary stuff.

Autistic Self Advocacy Network points out: "This week, Autism Speaks co-Founder Suzanne Wright announced the opening of the Policy Summit by characterizing autistic people as kidnap victims and our families as nothing more than victims of tragedy and burden." Autism Speaks is an organization that has demonized autism and Autistics for as long as it has existed.  The Autistic Self Advocacy Network (ASAN) and the Association for Autistic Community (AAC) have issued a statement on the folly of having such a group, famous for both its bizarre fundraising tactics and its exclusion of actual Autistics from its most important functions, as the national "voice" for Autistics or autism.
  
The "national plan," if any, will be built upon Autism $peaks ideas and mission, the foundational statement of which is “We are dedicated to finding global biomedical research into the causes, prevention, treatments, and cure for autism…” This is disturbing for many reasons, but instead of analyzing and pointing out the many problems, like I usually do, I would like to direct you to TWO URGENT CAMPAIGNS associated with the summit. One is an on-the-ground protest at George Washington University, created by Lydia Brown. The other is a letter and phone campaign, with pre-written scripts for you to use. Parent ally Beth Ryan worked with Lydia Brown’s information to come up with the scripts, which can be very useful for both Autistics and others who are not comfortable using the phone or writing letters. Yes, many parents do NOT subscribe to the doom-and-gloom scenario of Autism Speaks. They are sick of it. THANK YOU, BETH, for being a thoughtful ally. We need people like YOU, not the fear mongerers of Autism $peaks, as leaders when it comes to non-autistics working for better life outcomes for us all, as Autistics. The eradication of us and our Autism is not acceptable to this growing group of parent allies who are tired of throwing their money at Autism $peaks for very little return.

Autism $peaks says: "This week is the week America will fully wake up to the autism crisis. If three million children in America one day went missing – what would we as a country do?" The missing person" and "lost child" meme is an affrontery to Autistic people and our families. Actually, we are here, like we have been ever since you started your pity-based fundraising that tries to erase our communication/voices "time and time again," to borrow the horse-riding metaphor from your fundraising film.

But, as Autistic activist David K. March points out, this is "this is The Week Autism $peaks Finally & Officially Lost Its Mind." Please help "celebrate" by joining Lydia Brown to protest Autism $peaks on Wednesday (tomorrow, November 13, 2013, 11/13/13):

PROTESTING AUTISM SPEAKS’ POLICY SUMMIT AT GEORGE WASHINGTON UNIVERSITY


FOR IMMEDIATE RELEASE:
Autistic People to Protest Autism Speaks at GWU Wednesday
Media Contact:
Lydia Brown
202-618-0187
lydia@autistichoya.com


Autistic people are joining fellow people with disabilities and allies to protest Autism Speaks' Policy Summit at George Washington University's Trachtenberg Media and Public Affairs building at 21st and H Streets NW this Wednesday from 8:00am to 12:30pm.

We stand against Autism Speaks' long history of dehumanizing rhetoric about autistic people, irresponsible financial practices, and unconscionable claim to represent autistic people without including any autistic people in their leadership. At this week's Policy and Action Summit, Autism Speaks will once again be speaking about autistic people without autistic people. Autism Speaks is one of only a few major disability advocacy organizations that has not included a single individual with the disability it purports to serve on its board of directors.

Autism Speaks uses rhetoric of pity and fear about autistic people to raise millions of dollars that do not return to local communities and that fund research and policy agendas developed without any input from autistic people. It is long since time for the practice of speaking about people with disabilities without including us at the table to end. Autism Speaks does not represent autistic people, and we urge community members to stand against unscrupulous fundraising practices that remove money from our community and all other local communities where Autism Speaks holds Walk Now events. Only 4% of Autism Speaks' budget goes towards the "Family Service" grants that are the organization's means of funding services. While 44% of its budget goes toward research, only a small percentage of this research is aimed at improving quality of life for autistic people. Most of the research that Autism Speaks funds is instead devoted to causation and prevention.

We urge policymakers and community members interested in supporting autistic people and our families to support disability rights organizations led by disabled people and to reject Autism Speaks' agenda of siphoning money away from local communities and into research that does not benefit autistic people. As autistic people, we deserve a national plan on autism developed with us included at the table at every step of the way. We deserve a national plan on autism that moves away from the language of pity, fear, and tragedy, and toward achieving equality, access, and inclusion in our communities.
“Please join local autistic people and allies in protesting Autism Speaks' dangerous rhetoric, irresponsible financial practices, and unconscionable claim to represent autistic people without autistic people. Autism Speaks is hosting a "Policy and Action Summit" this week at George Washington University, and, much like their autism and law summit at GWU last year, will once again be speaking about autistic people without autistic people. Autism Speaks is an organization with a long history of harm to the autistic community.

We will be peacefully protesting on the corner of 805 21st St. NW, Washington, DC 20052, at the Trachtenberg policy and media building at GWU, where Autism Speaks is holding their event. The sidewalk area is wheelchair accessible.

Please contact me if you have any questions -- I can be reached by email at lydia@autistichoya.com, on Facebook, or by phone or text message at 202-618-0187.

Additional information:

In 2010, The National Walk Now for Autism raised over $750,000 from Washington, DC metro area families and business. Yet in 2011, only one Family Service grant, according to Autism Speaks' 2011 990, was given to a DC metro area business for a total of $19,640. This means that for every $1 Autism Speaks removed from our community, only 2.6¢ came back to help Autistic people and our families in the Washington, DC area.

The Autistic Self Advocacy Network urges community members to stand against unscrupulous fundraising practices that remove money from our community and all other local communities where Autism Speaks holds Walk Now events. Very little money donated to Autism Speaks goes toward helping Autistic people and families. Only 4% of Autism Speaks' budget goes towards the "Family Service" grants that are the organization's means of funding services. While 44% of its budget goes toward research, only a small percentage of this research is aimed at improving the quality of life of Autistic people. Most of the research that Autism Speaks funds is devoted to causation and prevention.

Autism Speaks is not financially responsible. Although Autism Speaks has not prioritized services with a practical impact for families and individuals in its budget, its rates of executive pay are the highest in the autism world: some salaries exceed $400,000 a year. Its fundraising expenses exceed spending on most of its core programs.

Autism Speaks is one of only a few major disability advocacy organizations that has not included a single individual with the disability it serves on its board of directors.

For community members interested in supporting Autistic people and our families, there are many better options for giving to the Autistic community both locally and nationally than to support Autism Speaks’ agenda of siphoning money away from local communities and into research that does not benefit Autistic people and their families.

To read more, see:

- http://autisticadvocacy.org/wp-content/uploads/2012/05/Autism_Speaks_Flyer.pdf

- http://thecaffeinatedautistic.wordpress.com/so-what-is-the-problem-with-autism-speaks/

- http://www.autistichoya.com/2013/11/coopting-the-movement.html

Next item, a letter-writing and phone campaign have been started by a PARENT ALLY. I cannot stress that point enough, because Autism $peaks claims to speak for parents, and it does not speak for many. And, parents are joining with Autistics in ever greater numbers to call A$ out on its tactics.

Information about HOW TO CONTACT YOUR CONGRESSPERSON, and an appeal from Beth Ryan, are here:

“Community Members: If you're as appalled as we are about the malfeasance of Autism Speaks. Here is your chance to take action. The importance of contacting lawmakers cannot be overstated here. Contact your legislators by email (pre-written email below) or by phone ( a sample script is below). If you have questions, have never done this before, or are nervous to do it, let's discuss that on this thread.

Contact info for Senator: http://www.senate.gov/general/contact_information/senators_cfm.cfm

Contact info for Representative: http://www.house.gov/representatives/

https://www.facebook.com/notes/parenting-autistic-children-with-love-acceptance/possible-phone-script/589514987753051

https://www.facebook.com/notes/parenting-autistic-children-with-love-acceptance/prewritten-email-to-senatorrepresentative/589513761086507

POSSIBLE PHONE SCRIPT

“Hello, my name is ______.  I am a constituent in Representative/Senator______’s district.  I’m calling from ______city, ________ state.

I am calling Representative/Senator_______ to express my concern about the Policy and Action Summit being hosted by Autism Speaks.  Specifically, I understand that Autism Speaks will be visiting all  535 members of Congress.   Autism Speaks has excluded Autistic people from participation.  Further, Autism Speaks is among a handful of major disability advocacy groups that does not have a person with that disability in a leadership position.  This summit will take place without Autistic people being represented.

I ask that you support of the position of Autistic people and their allies.  There can be no national plan on Autism that excludes Autistic people.  Autistic people deserve a national plan on Autism that moves away from the language of pity, fear, and tragedy being propagated by Autism Speaks, and toward achieving equality, access, and inclusion in their own communities.

I hope that Representative/Senator_______ will support his Autistic and Autistic Ally constituents.  I appreciate his/her hardwork.”

PREWRITTEN LETTER

Dear (identify your legislator by tile Representative/Senator and name.  ex.  Senator Sanders),

I am writing to express my concern about the “Policy and Action Summit” being hosted by Autism Speaks this week.  Specifically, I understand that Autism Speaks will be visiting all 535 members of Congress.  Autism Speaks has a long history of excluding Autistic people from its advocacy efforts—including this summit and meetings.  Further, as an organization they create and disseminate harmful Autism fear and tragedy rhetoric.

As your constituent, I ask that during your meeting with Autism Speaks representatives you vocalize your support of the position of Autistic people and their allies.  There can be no national plan on Autism that excludes Autistic people.  Autistic people deserve a national plan on autism that moves away from the language of pity, fear, and tragedy, and toward achieving equality, access, and inclusion in their communities.   Autistic people are entitled to be fairly represented in discussions about them.

Autism Speaks is one of only a few major disability advocacy organizations that has not included a single individual with the disability it serves on its board of directors.  Further, Autism Speaks damages the Autistic community.  Autism Speaks uses rhetoric of pity and fear about autistic people to raise millions of dollars that do not return to local communities and that fund research and policy agendas developed without any input from autistic people. It is long since time for the practice of speaking about people with disabilities without including us at the table to end. Only 4% of Autism Speaks' budget goes towards the "Family Service" grants that are the organization's means of funding services. While 44% of its budget goes toward research, only a small percentage of this research is aimed at improving quality of life for autistic people. Most of the research that Autism Speaks funds is instead devoted to causation and prevention.

Ideally, you personalize your email here.  But it is not necessary.
Ex.:  I am an Autistic Adult/Parent of an Autistic child.  Autism Speaks does not speak for me/for my family.  It is important to me that my voice be represented when considering a national plan on Autism because of the great impact that plan will have on me/my child etc.

I look forward to your reply and appreciate your hard work and support of the Autism Community.

Sincerely,
Your Name
Your Full address and zip.  It is very important to include this information.



Children: Protesting Autism $peaks since 2010
 photo of young boy about 8 years old handing out flyers. Sign behind him says "Autism $peaks does not speak 4 me"

Hey! Autism Speaks!!! We hear about your big summit in Washington on Autism. Great. How many Autistic people were invited to participate? Have you learned from your past malfeasance? Or is it more of the same?" -Parenting Autistic Children with Love and Acceptance

Autism $peaks protest images from ASAN-PDX protest

In other breaking news, thanks to Lydia Brown, Autism Speaks supports the Judge Rotenberg Center. They were quite willing to even print the JRC's name in a "join us at our resource fair!" flyer. Electrical shocks as a "resource" is not what Autistic people want. Please take a moment to read this and then consider calling or emailing your Congresspeople today:

An Unholy Alliance: Autism Speaks and the Judge Rotenberg Center 

NOTHING ABOUT US WITHOUT US, AUTISM SPEAKS. If you do a search on "autism speaks policy summit" all but 4 of the first two pages of hits are criticisms of Autism Speaks and its "Non-Autistics Only" policy summit.



I'll say.... the image below is an Autism Speaks YouTube video titled "Autism Speaks to Washington-Part 2" and the screen is black except for the words "Please stand by. We're experiencing technical difficulties."



Other links countering Autism Speaks' continued willful ignoring of Autistics, including some parents whom I traditionally don't post much from. Thank you to those who are jumping OFF the Autism Speaks bandwagon!:


http://adiaryofamom.wordpress.com/2013/11/12/no-more-a-letter-to-suzanne-wright/

http://raisingrebelsouls.blogspot.com/2013/11/the-price-we-pay-for-autism-speaks.html

http://theautismwars.blogspot.com/2013/11/a-mouse-that-roars-standing-in-defiance.html

http://www.blog.mamasturnnow.com/2013/11/12/dear-ms-wright-autism-speaks-and-any-others-out-there-who-may-read-this/

http://evilautie.org/2013/11/12/the-cost-of-people/

http://smallbutkindamighty.com/2013/11/12/many-people-mad-autism-speaks-right-now/

http://emmashopebook.com/2013/11/13/whats-wrong-with-autism-speaks/ 

http://www.stuartduncan.name/autism/autism-speaks-is-not-and-has-never-been-listening-despite-their-slogan/

http://www.wrongplanet.net/postt119266.html

http://evilautie.org/2013/11/13/why-im-proud-of-my-community-including-our-allies/

http://www.wrongplanet.net/postt244978.html

http://www.wrongplanet.net/postt244919.html

http://pucksandpuzzlepieces.com/2013/11/13/living-not-existing/

http://www.forbes.com/sites/emilywillingham/2013/11/13/why-autism-speaks-doesnt-speak-for-me/

http://specialneedsoc.com/2013/11/13/why-i-wont-be-at-the-autism-speaks-walk-this-saturday/ 

http://www.decipher-morgan.com/2013/11/autism-speaks-isnt-speaking-for-us.html

http://thatcrazycrippledchick.blogspot.com/2013/11/this-is-week-autism-speaks-meets-its.html

http://kwomblescountering.blogspot.com/2013/11/fck-you-autism-speaks.html

http://joeyandymom.blogspot.com/2013/11/the-truth-whole-truth-and-nothing-but.html

http://ravenswingpoetry.com/2013/11/13/listen-an-open-letter-to-autism-speaks/

http://blog.thearc.org/2013/11/16/open-letter-suzanne-wright-co-founder-autism-speaks/

http://www.autism-society.org/news/autism-society-response.html

From Sharon Davanport: "Autism Speaks’ Suzanne Wright's language choice in her op-ed was a deliberate stab at Autistic Activists." and "Don’t underestimate the impact of John Elder Robison’s resignation:"

https://www.facebook.com/sharon.farleydavanport/posts/245056715649203

http://feministsonar.com/2013/11/autism-speaks-does-not-speak-for-me/

http://emmashopebook.com/2013/11/14/a-guest-post-from-richard-long/ 

http://www.blogher.com/yes-autism-speaks-sucks-what-now

https://www.facebook.com/AutisticChick/posts/758507064166647

http://www.jkp.com/blog/2013/11/in-response-to-suzanne-wrights-call-for-action-in-dc-from-author-and-autism-adovcate-liane-holliday-willey-edd/ 

http://www.thinkinclusive.us/the-best-argument-against-autism-speaks-a-special-educators-perspective/

http://autisticbigbro.wordpress.com/2013/11/14/why-i-am-against-autism-speaks-and-why-it-matters/

http://evilautie.org/2013/11/11/this-is-autism-speaks/

http://blog.sfgate.com/lshumaker/2013/11/14/who-does-autism-speaks-speak-for/

http://www.psychologytoday.com/blog/aspergers-alive/201311/reporters-guide-the-autism-speaks-debacle

http://www.disabilityscoop.com/2013/11/14/noted-cuts-ties-autism-speaks/18893/

http://autismacceptance.quora.com/Copy-of-my-letter-Re-Autism-speaks

http://autisticcommunity.org/category/uncategorized/

http://autismitsallinthefamily.blogspot.com/2013/11/dear-autism-speaks.html?m=1

http://dmitrylaughs.wordpress.com/2013/11/12/my-son-is-not-lost/

http://gareeth.wordpress.com/2013/11/14/enough-with-making-distinctions/

http://gareeth.wordpress.com/2013/11/13/since-everyone-is-posting-about-voldemort-speaks/ 

You Are Not Wrong, by Henry Frost: https://ollibean.com/2013/11/14/wrong 

Non-speaking Autistic Activist Responds to Suzanne Wright of Autism Speaks

So, what’s the problem with Autism Speaks? (includes corporate donors to avoid)

http://paulacdurbinwestbyautisticblog.blogspot.com/2013/11/autism-speaks-violates-crpd-convention.html 

http://30daysofautism.wordpress.com/2013/11/16/fear-hate-and-exclusion-its-time-to-silence-autism-speaks/ 

http://thatcrazycrippledchick.blogspot.com/2013/11/this-is-week-autism-speaks-meets-its.html?spref=fb

http://evilautie.org/2013/11/11/this-is-autism-speaks/

http://thatautisticthatnewtownforgot.blogspot.com/2013/03/eugenics-and-cure-polemic-against.html

http://www.aane.org/blog/2013/11/17/response-to-the-autism-speaks-controversy/

http://www.bothhandsandaflashlight.com/2013/11/17/an-open-letter-to-autism-speaks/ 


Note that "This event is closed to the public." http://mediarelations.gwu.edu/george-washington-university-serve-host-%E2%80%98autism-speaks-washington%E2%80%99

Next, a somewhat convoluted speech by Eric Cantor. Mostly about unspecified "medical research." I typically don't post things I don't like, but you might as well hear the profound words of a politician who has met one Autistic child but who does not have really that many ideas about autism. In addition, he is involved with the Kids First Research Act, which is specifically geared toward "curing" autism and other "pediatric" conditions. Autism is not a "pediatric condition," but I will not write about that here. Not unless LIFE is a "pediatric condition."

http://www.frequency.com/video/leader-cantor-delivers-remarks-at-2013/131043029/-/5-265

"The #KidsFirst Research Act will put additional taxpayer funding into scientific research of pediatric diseases such as autism and Fragile X. Searching for a Cure: It's not enough to just conduct research for new treatments... we need to be pushing for research that will help uncover the cure for autism spectrum disorder and many other diseases impacting children." The image has been altered with language from the CRPD which says: " respect the right of children with disabilities to preserve their identities" and "Autism is not a disease" and scare quotes around the word "cure."


This blog post is the third hit if you do a search on "autism speaks policy summit."



The "This is Autism" flash blog starts today. It counters the woo put out by Autism Speaks. I will not be linking to each flashblog entry because there are so many of them (68, SIXTY-EIGHT, so far) , and because they are linked here. TOTAL number before submissions were closed was 246 (TWO HUNDRED FORTY SIX) in one day! A record for our community and a record in any community, I think.)

Karla Fisher did not have to do TOO much to update her graphic from 2012. "Business as usual" is NOT going to work any more. I think Autism $peaks, Congress, et al. might need to use THIS year to rethink their "national-plan-without-us" concept.
Title: "Congressional hearing on Autism 2012." The 2012 is crossed out and replaced with 2013. There is more and I hope to put in all the text but running out of time today.


Karla's ASD Page image is here in its original location



5 comments:

purplewowies said...

Why, oh, why does one of the senators for my state have to be evil? (He subscribes to Autism One ideology... sigh. And he probably wouldn't listen to me...)

Liz Ditz said...

Hi Paula, by the end of today I should have a roster of the bicameral Autism Caucus up. I will link here when I do. I think it is worth having to keep communicating with our Senators and Representatives on what real autistics (as opposed to the fantasy autistics of A$) actually want.

Paula C. Durbin-Westby said...

Thank you, Liz!

SmackCrackNPop said...

Communism is closed to the public, that's why it's stupid!

Julie said...

We are holding an event in Pennsylvania for Autism Awareness. Other than calling all of the Autism centers, advocates, foundations, etc., is there a list available online that will tell me what businesses do NOT support Autism Speaks?

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