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Join the Protest Against Autism Speaks

For more details, see this Facebook Event.  We’ll add that as we (Association for Autistic Community) prepare for our first annual conference (for, about, and by autistic people) for 2014, the Autism Speaks summit remind us of the need for our people to have a chance to share and learn with each other in person. Unlike Autism Speaks, we know that our voices can and should inform and educate.

But back to the protest – from the event’s Facebook page:

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.

(The protest organizer asks for people to contact her if they have questions – go to the Facebook Event page to see her contact info)

Some Background on the Problem

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

A Protest Against a Summit Without Us

An autistic self-advocate is arranging a protest against an “summit” that is about us without us. We are happy to spread the word about the event (this isn’t an Association for Autistic Community event, although we definitely share her values and are glad to publicize this event). We also expect many of our friends to be part of this protest.

FOR IMMEDIATE RELEASE:
Autistic People to Protest Autism Speaks at GWU Wednesday

Media Contact:
lydia@autistichoya.com
http://www.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.

Non-Discrimination Policy

We have approved our first policy – a non-discrimination policy.

The policy reads:

We prohibit discrimination and do not tolerate any harassment, derogatory comments, or inappropriate behavior based on a person’s sex, race, age, color, national origin, sexual orientation, gender identity or expression, marital status, religious beliefs, veteran status, disability status, communication differences, or any other physical or personal characteristic.