Saturday, November 21, 2009

How About Calling Everyone a Train Wreck?

Andrea Peyser of the New York Post, one of my favorite ::dripping sarcasm:: papers because it makes Fox News look like CNN (the Cuban News Network that is), posted this blurb about protests at the Autism Speaks benefit concert on Nov 17 in NYC:

Bruce Springsteen sang. Jerry Seinfeld joked. But former NBC/Universal CEO Bob Wright had harsh words for protesters who tried to muck up the A-list benefit concert he put on at Carnegie Hall on behalf of autistic kids.
"The protesters are lucky," said Wright. "They're well off enough, healthy enough, to do it. I wish my grandson were able to join them."
Wright runs Autism Speaks, which has raised over $200 million for research into a disorder that afflicts mainly children.
That didn't stop a clutch of sign-carrying adult protesters from descending on Carnegie Hall Tuesday night, trying to disrupt a concert attended by Donald Trump, Howard Stern and Martha Stewart. Protesters complain that there's not one autistic person on the board of the org, which produced an "offensive" ad suggesting that autism was a fate worse than death.
Wright, whose grandson cannot talk because of autism, said the disorder is exploding among young kids who can't speak for themselves.
"This is serious business," he said.
Give this worthy group a chance.

The little piece of journalistic relevancy our conservative journalist (isn't that a contradiction in terms?) left out is that these were AUTISTIC adults. Kinda puts juuusst a slight different spin on the story dunnit?

But over to Mr Wright, who I'm sure understands who these people were, maybe he should think about some relevent facts that his organization leaves out of many of the pushes for donations to Autism Speaks:
  • A large percentage of those on the spectrum DO speak.

  • Those '1 in 100' numbers Autism Speaks uses INCLUDE all these children on the same area of the spectrum

  • There are many affected by the spectrum who would prefer to thought of people to be worked with rather than problems to be worked on.

  • These people protesting share many of the same issues as the kids Bob is 'fighting' for. They can provide more valuable insight to these kids' issues than most others.

To tie it all back, I also noticed within the same article, there was also a picture of Sarah Palin and her child, who has Down Syndrome. I started thinking what would happen if organizations like Easter Seals, began running ads about children with disabilities portraying ALL kids with disabilities as 'train wrecks' and life-wreckers and needing more funding to find a 'cure' for all these life destroying disasters (and much less to support their existance)? I wonder how many of these 'subgroups' would react positively? Bob, there are quite a few different colors on the spectrum...and it definitely AIN'T black and white...

I have to agree with Andrea on one thing, we should give this worthy group a chance. But I'm speaking of the group on the sidewalk, not the auditorium....


farmwifetwo said...

When the one on the sidewalk stops only thinking of themselves and stops shunning parents of children and adults with autism. When they realize that not everyone, including those adults who can talk, don't find it wonderful and would like a cure.

When they don't think all my son deserves as an adult is to be dumped in a group home and handed just a few more supports b/c he should sit and shut up to push the agenda of those that are capable of having lives.

I'll think about it.

While they were whining in NYork... Those in the State of Mass, were losing supports.... where was ASAN???? Which proves they truly don't care about those on the severe/disabled end of the spectrum.


Was Autism Speaks on the front lines in MA?

We can agree to agree about ASAN's leaning toward working more for those on the spectrum who are more independent, but even an Autism Speaks comprimise and be 100 times more damaging (remember the PA legislation debacle where AS almost sold good insurance legislation coverage for the good of the 'bigger picture'?) than a small organization's exclusion.

You can plainly see how easily it is for the public to dismiss groups like ASAN. With one paragraph, the Post reading public now considers them cold and heartless; worthy only of scorn and not consideration...

Socrates said...


One of the activists, not part of the demo, that was at the event is the father of a severly autistic boy, and made it clear to the parents that the issue was the demonisation of Autistics for the purposes of fundraising and the fact that only 4% of their budget goes on actually helping families.

ASAN has consistently campaigned on issues that affect the most severely Autistic people and you show little recognition of the sometimes devastating consequences of HFA/AS.

r.b. said...

No other disability is so maligned. Great insight!

Once it has been determined how to reach, and how to teach, rather than how to rid the gene pool of autism, we'll see progress.

We are in the baby stages of autism study. The dark ages.

The author said...

Farmwifetwo before you make your pronouncements, can I ask you this, have you ever experienced what it is like to be unable to speak?

You think us "high functioning" and "Aspergers" can speak so fluently.

Well it ain't always so.

I ask you, do you really know? Have you been there, when not only speech goes but language as well?

It ain't pleasant and to say it is frightening is an understatement, but this has been a fact of my life throughout my life.

Do you think before I was diagnosed nobody recognised that?

Well of course they bloody well did, they just didn't have the familiarity with todays lables.

Who is more real in this world? what are you really discussing?

What do you know, what will you ever know, I can tell you I bloody well do know.

Do'C said...

I liked your take on this Bill.

Chromesthesia said...

Farmwifetwo, they seem to be thinking more of all folks with autism than Autism Speaks.
I've never heard of Autism Speaks protesting things like the skin shock "treatments" at the JRC.I doubt Autism Speaks is even ranting about supports being cut and the like. If that was the case, wouldn't more than 4% of their budget go towards family and services?
And why can't they have someone with autism on their board instead of going on and on about wiping out autism without truly trying to understand it?
ASAN seems to care more about those on the severe spectrum of autism than Autism Speaks does. They don't seem to care enough to even understand that autism is a spectrum, and folks who are on the so-called higher end of it have problems and challenges as well and need to be addressed with something besides studying how to wipe out autism

Winnie said...

Bill, I enjoyed your entry -- I wish you would blog your PSA awareness ideas -- pretty please?


Clay said...

fuckwit2 - Some of my favorite people online are NT parents of autistic children. I certainly don't shun them, because they aren't ignorant bitches with a hate-on for autism.

Autism Reality NB said...

farmwife2 I admire your willingness to post on a site where the Neurodiversity, autism is beautiful crowd gathers. There is no way you can influence them or change their minds but thanks for giving it a shot.

The fact is that the event in question was held for the purpose of helping children with autism disorders. Research is needed, treatment and cures for their autism are all needed and such benefits are the only hope for many severely autistic children. The last thing they need is the self indulgent "look at me" protesters disrupting the performance.

They need real help, not the "insight" offered by people who don't know them or share their realities whether it be the protesters or those who have joined here in criticizing you.


Hi Harold...
I agree wholeheartedly that children (and adults for that matter) who cannot convey their needs and will need lifelong support need and deserve our support and groups like Autism Speaks are right to focus efforts and spend money to determine possible causations, investigate treatement options and support groups that will help provide the services they need.

But, last time I checked, Autism Speaks does not make distinctions as to who makes up their spectrum of autism. If they use the figures 1 in 150 or 1 in 100, they are claiming to speak (and fundraising from) based on the ENTIRE spectrum; not just those who are MOST deserving or whether an individual can or cannot understand or be understood. Since AS 'speaks' for all of autism, shouldn't they also LISTEN to all of autism?

Hey, Clay may not speak for my daughters or your sons, but if AS raises funds partially because Clay is in those figures, shouldn't Clay also have a say in what gets discussed and funded?

If we'd like to get into a discussion about
If we want to get into a discussion about what gets funded and who should get more or less, that's perfectly fine...but a completely different discussion. This is about (not to get cheeky but) donation without representation. I'd like to think that I try and be concerned about as many of the issues on the autism spectrum as possible; and if Autism Speaks fundraises based on the whole of the spectrum, they should too.