Video: Autism Reality by Alex Plank

2 comments December 15th, 2009 02:36pm permalink

Autism Reality is a 10 minute documentary film about autism by Alex Plank. The film features interviews with Dr. Temple Grandin, Alex himself, and a handful of others including Alex’s parents.

This film shows a perspective not often seen in autism media by portraying autism as a reality which is neither good nor bad, just a different way that some people are wired.

Alex is the founder of WrongPlanet.net, one of the earliest and largest online communities for people on the autistic spectrum.

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Filed under: Autism / Asperger's | 2 comments

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A Friend In Need

Add comment December 8th, 2009 11:05pm permalink

Sometimes it is hard to be an aspie. I am very lucky because no matter how hard things get sometimes, I have people who can, and do, help me out. If it weren’t for those people, especially my family and Karen, I really don’t what my life would be like now. It is likely that I would be homeless or dead, but instead, I am happy and warm.

Most people are not as lucky as me. My friend aspietalk is having a very hard time and will be homeless in a couple of weeks. She has recently started to get connected with services that may help, but the process of getting help is slow and painful. Tons of red tape and disorganization that is difficult for even the most healthy and organized of people, and seems to be purposefully impossible for people who face various challenges due to health, psychology, and/or life situation. I will not rant about that now.

I am writing this to let people know about aspietalk’s situation and give a shout out to anyone who may be able to help with a donation to help her get through this time without ending up homeless again. She has been through too much for too long and really needs the help of kind strangers right now.

Please visit her site and use the PayPal Donate button to give what you can. While you are over there, I recommend reading her posts. She has a really amazing way painting pictures of her thoughts and experiences with words.

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Filed under: Autism / Asperger's | Comments?

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All Drupal All The Time – Too Bad I Can’t Breathe

1 comment November 6th, 2009 08:46pm permalink

Writing on the iPhone. Hard to breathe. Shaky. Strangely okay besides that. Sometimes writing helps. Been very busy lately. All Drupal all the time. Besides from the insane learning curve and non-intuitive UI, I am in awe of its power and flexibility. After more than 15 hours of video tutorials and reading tons of docs, I am finally understanding how it works and how the code is organized. I am learning while building a site for an awesome organization. Will link to it when it is done. If all goes according to plan, it will launch around Jan. 1st, 2010. Not mentioning the org. because there is a board and I don’t know if things like that have to be decided about, but if someone who knows the answer and wants to post it in the comments, go for it :) I haven’t used Drupal to build a site since version 4.1 other than keeping my test site updated. Been wanting to learn it for real for a few years so very happy to finally get around to it. Still, it makes me appreciate the simplicity and clean code of WordPress even more than I already do. Been having some small jobs besides from that.

Me & K went to Monterey for K’s 40th birthday and had an awesome time. Happy birthday K! We went to the Monterey Bay Aquarium to see the seahorse exhibit. It was amazing. We also saw lots of sharks and rays and other random sea creatures. We stayed overnight at a nice bed and breakfast and got home the next day in time to give Halloween candy to kids. Not so many kids this year.

Still hard to breathe but not so dizzy anymore. Sometimes it is kind of annoying to be me but most of the time I like it. Enough writing for now. I think it helped some.

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Filed under: Autism / Asperger's, Geekery, Random | 1 comment

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Letter in Response to Autism Speaks’ Exploitative Practice

1 comment October 1st, 2009 08:54am permalink

The Autistic Self Advocacy Network and other organizations representing the Cross-Disability Community are distributing this joint letter to the sponsors, donors and supporters of Autism Speaks following the organization’s latest offensive and damaging Public Service Announcement, “I am Autism“. If you are an organization that would like to sign on to the letter, please e-mail ASAN at info@autisticadvocacy.org before Close of Business Tuesday, October 6th, 2009. If you are an individual who would like to join ASAN’s upcoming protests of Autism Speaks in Ohio, New England, New York City and elsewhere across the country please e-mail ASAN at info@autisticadvocacy.org Thank you for your support and please feel free to distribute for additional signatories.

To the Sponsors, Donors and Supporters of Autism Speaks:

We, the undersigned organizations representing self advocates, parents, professionals and allies in the Autism, Autistic and Disability Communities, are writing to you to express our concern about the recent actions of Autism Speaks. Our work is about helping empower and support people with disabilities of all kinds, including adults and youth on the autism spectrum, and we recognize that there are a wide variety of means towards accomplishing this goal. Yet, Autism Speaks’ recent choice to use fear, stigma, misinformation and prejudice against Autistic people as a fundraising tool does real damage to people with disabilities everywhere. The most recent example of this lack of ethics can be found in Autism Speaks’ new “I am Autism” campaign which states,

“I am autism…I know where you live…I work faster than pediatric AIDS, cancer and diabetes combined. And if you’re happily married, I will make sure that your marriage fails. Your money will fall into my hands and I will bankrupt you for my own self-gain…I will make it virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain…I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness.”

Not only does this campaign rely on offensive stereotypes and inaccurate information (research indicates that parents of Autistic children are not more likely to divorce than parents of non-Autistic children), but it also does real damage to the cause of disability rights. By choosing to portray Autistic people as husks of real people, stolen out of our own bodies, Autism Speaks reinforces stereotypes and prejudice against people with disabilities that have existed for centuries and have been the source of pain, segregation and violence.

We are calling on you to end your support for Autism Speaks and to find new ways to show your support for Autistic people and others with disabilities. As the result of a pattern of unethical behavior and irresponsible governance, outlined below, we believe that Autism Speaks as an organization no longer deserves your time, energy, money and support.

Autism Speaks uses damaging and offensive fundraising tactics which rely on fear, stereotypes and devaluing the lives of people on the autism spectrum:

Autism Speaks’ unethical fundraising tactics are not limited to the new “I am Autism” video. Its television Public Service Announcements compare having a child on the autism spectrum to having a child caught in a fatal car accident or struck by lightning. In fact, the idea of autism as a fate worse than death is a frequent theme in their fundraising and awareness efforts, going back to their “Autism Every Day” film in 2005. Indeed, throughout Autism Speaks’ fundraising is a consistent and unfortunate theme of fear, pity and prejudice, presenting Autistic adults and children not as full human beings but as burdens on society that must be eliminated as soon as possible.

Very little money donated to Autism Speaks goes toward helping Autistic people and families:

According to their 2008 annual report, only 4% of Autism Speaks’ budget goes towards the “Family Service” grants that are the organization’s means of funding services. Given the huge sums of money Autism Speaks raises from local communities as compared to the miniscule sums it gives back, it is not an exaggeration to say that Autism Speaks is a tremendous drain on the ability of communities to fund autism service-provision and education initiatives Furthermore, while the bulk of Autism Speaks’ budget (65%) goes toward genetic and biomedical research, only a small minority of Autism Speaks’ research budget goes towards research oriented around improving services, supports, treatments and educational methodologies, with most funding going towards basic research oriented around causation and genetic research, including the prospect of prenatal testing. 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, with annual salaries as high as $600,000 a year.

Autism Speaks excludes the people it pretends to represent:

Autism Speaks is one of an increasingly few number of major disability advocacy organizations that refuse to include any individual with the disability they purport to serve on their board of directors or at any point in their leadership and decision-making processes. In large part due to Autism Speaks’ public relations strategy of presenting Autistic people as silent burdens on society rather than human beings with thoughts, feelings and opinions, Autism Speaks’ governance policies are deeply unrepresentative and out of step with the mainstream of the disability non-profit community.


Contrary to the “I am Autism” video, which equates autism with AIDS and Cancer, autism is not a terminal disease. It is a disability, one that comes with significant challenges in a wide variety of realms. Yet the answer to those challenges is not to create a world in which people are afraid of people on the autism spectrum. The answer is not to create a world in which the word autism is met with terror, hatred and prejudice. It is to work to create a society that recognizes the civil rights of Autistic people and others with disabilities. It is to work to create a world in which people with disabilities can benefit from the supports, the services and the educational tools necessary to empower them to be full citizens in society.

We are Autism’s true voice – Autistic people and those with other disabilities ourselves, and our allies, family members, friends and supporters. Autism Speaks does not speak for us. We are not stolen – we are right here. Our lives may be difficult – but they are worth living. Autism Speaks Does Not Speak For Us and we will not work with an organization that relies on damaging and offensive stereotypes to advance an agenda out of step with those they purport to represent. We call upon you to recognize this and find better avenues for your admirable desire to support Autistic people and our families. We call upon you to end your support for Autism Speaks.

Regards,

National:

The Autistic Self Advocacy Network
Self-Advocates Becoming Empowered (SABE)
The National Council on Independent Living (NCIL)
ADAPT
TASH
Disability Rights and Education Defense Fund
The National Youth Leadership Network (NYLN)
Autism Network International (ANI)
Little People of America (LPA)
Not Dead Yet
The Bazelon Center for Mental Health Law
Autistic Spectrum Partnership In Research and Education (AASPIRE)
Mothers From Hell 2

International:
Autistic Self-Advocacy Network-Australia
Autism Rights Group Highland (in Scotland, United Kingdom)
The Autistic Community of Israel
Autreach IT in the United Kingdom
The Southwest Autistic Rights Movement (SWARM) in the United Kingdom

Local and Regional:
ADAPT-Montana
The Center for Disability Rights in Rochester, NY
The Regional Center for Independent Living in Rochester, NY
The Michigan Disability Rights Coalition
The Institute for Disability Access in Austin, Texas
The Maryland Coalition for Inclusive Education
The Paraquad Center for Independent Living in St. Louis, Missouri
The Lonesome Doves in Pennsylvania
TASH-New England
Together Enhancing Autism Awareness in Mississippi (TEAAM)
Wesleyan Students for Disability Rights at Wesleyan University in Connecticut
Tangram in Indianapolis, Indiana


Ari Ne’eman
President
The Autistic Self Advocacy Network
http://www.autisticadvocacy.org
info@autisticadvocacy.org
732.763.5530

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