22 Jan 2008

'Autism Speaks' charity bully autistic child

I just read this on Abfh.

The massive charity, Autism Speaks, was founded just over 2 years ago by Bob Wright (formerly chairman and CEO of NBC Universal) and his wife Suzanne. They have raised and spent millions, with charity walks and huge celebrity-soaked galas; the latter tending to cost more than they raise, but hey, it's all about awareness right(!) Their extravagant use of funds is evident on a 2006 tax return (pdf link). Autism Speaks are proud to have James Watson quoted on their web site saying, “Autism is the worst thing that can happen to a family.”
(Link; http://www.autismspeaks.org/inthenews

I will never understand that.

This organisation are also responsible for the infamous 'Autism every day' film, in which a group of mums whine on camera about how hard their lives are because they are raising autistic children. The film was staged, and deliberately set out to make things look as bad a s possible, yet it was selling itself as an honest look at the lives of everyday folk. One fabulously wealthy mum spoke on camera about how she considered murder/suicide with her daughter, while that daughter was in the room!

The mission of Autism Speaks is displayed on their web site;

At Autism Speaks, our goal is to change the future for all who struggle with autism spectrum disorders.

We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; and to bringing hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals.

Autism Speaks aims to bring the autism community together as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis. It is our firm belief that, working together, we will find the missing pieces of the puzzle.

Autism Speaks. It's time to listen.

It should be clear to anyone reading the above, that when they call themselves 'Autism Speaks' they really mean, 'anyone aside from autistic people speaks.' This extremely wealthy charity is concerned solely with the prevention and cure of autism and not with ways of helping people live with autism. Many people opposed to the aims and methods of this monstrous organisation have supported a petition, Autism Speaks: Don't Speak for Me. I would urge you to sign it.

Recently, a 14 year old created a low key parody web site called 'NT Speaks' lampooning the ridiculously mis-named objectives of Autism Speaks. How did this huge and powerful charity and lobby group react; why they sent the lawyers after her! Yes, the charity who want 'to bring the autism community together as one strong voice' have made it very clear they do not want to hear the voices of autistic children who disagree with them!

The bully tactics employed included a letter signed by 30 lawyers
suing her for $90,000 for copyright infringement, funds lost and loss of supporters. This is how a multi-million dollar charity spend their income. When they realised her age, they dropped the monetary claim, but insisted that she destroy the source code and give up the domain name. The girl felt compelled to comply and the site has been destroyed.

What this child had done was entirely legal and Autism Speaks had no right to bully her in this way. Under US laws, parody is not considered a copyright violation. They have also threatened to sue anyone else who uses their logo or trade marked material; sites like this.

So anyone considering supporting this group in the future, or any celebrity thinking they're doing a good turn while getting themselves exposure and brownie points for doing some charity work, think about where the money may be going.


Usethebrains Godgiveyou said...

I tried to download their front page...thanks for the downloadable link. (sites like this). I have a new blogspot, autismsqueaks, which is not connected to the hub. Maybe I'll download it there!

Club 166 said...

Thanks for the link to the parody website, Sharon.

Too many corporate entities have become too possessive when it comes to things like copyright and trademark infringement. And yes, parody is specifically exempted in the law, and yet they intimidated a kid on the spectrum. Bully for them!

May one thousand parody sites rise from the ashes of 'NT speaks'.


Patrick said...

"...and to bringing hope to all who deal with the hardships of this disorder."

They haven't brought me much hope, in fact my depression is worsened by the fact that they are not out (at this point) to actually help autistic people, but instead to use shock and awe tactics to forward their own purse linings.

Ed said...
This comment has been removed by the author.
Sharon McDaid said...

I like the new blogspot name R.B.

Joe, yeah, parody proliferation would be great.

Patrick, there are so many things wrong with that charity's mission statement. 'Shock and awe' is an appropriate way of labelling their current tactics. Imagine what that level of funding and organisation would be capable of if they really did want to listen to and help autistic people.

Nannarob said...

Autism Speaks causes heartache and anger among the autism community- a group who can speak for themselves. I have been horrified by the way that this lobby group depicts autists. Their message is cruel and corrupt and their aim to remove autism from the world is ruthless.

I am an NT who has been a member of WP for a year. My life has been enriched by the friends I have made.

Sharon McDaid said...

Nannarob, I agree with your assessment of Autism Speaks and I despair at their power and claim to represent autistic people and their families.

Anonymous said...

Don't forget to sign the anti-Autism Speaks petition:


Anonymous said...

Forgive me if I come across as dense but I'm confused.
What is your ultimate goal with this anti Autism Speaks campaign? Are you looking to shut them down or are you just attempting to make the public more aware of what you all find offensive acts by the group?
I've seen quite a few Autism Speaks doesn't speak for me sites with lots of information but I'm still unclear as to what the goal here is. Lots of fist shaking, moral indignation and outrage but no statements as to what the ultimate vision is.
I'm also wondering if you might suggest an acceptable substitute site or organization to gather information from?

Christina Colwell said...

My husband and I want to make regular contributions to Autism Research. We were planning to make those contributions to Autism Speaks. However...if they are not using fund effectively..then which organizations would YOU suggest?
And why?

Anonymous said...

Christina Colwell.
In response to your question about what a good substitute to Autism Speaks would be, I would definitely recommend the Autistic Self-Advocacy Network (ASAN) as it's run by Autistic people for Autistic people.

Their website is here: http://autisticadvocacy.org/