Tuesday, October 06, 2009

The NAS and Autism Speaks UK respond to "I am autism"

Firstly this is what the NAS have to say:

"The NAS is aware of a campaign video called "I Am Autism", produced by the US charity Autism Speaks.

While we understand the huge pressure many families are under, we cannot support a campaign that is so negative in its portrayal of autism. We strongly believe that people with autism make a unique and valuable contribution to society.

Autism is a serious and lifelong condition. For many families and individuals affected by autism, we know that life can be extremely difficult, especially when they are not getting appropriate support. However, the right help at the right time can make an enormous difference. It is crucial that this support is available for all who need it."
And this is what Hilary Gilfoy the Chief Exec of Autism Speaks UK has to say:
“Autism Speaks in the UK is a quite separate and independent entity from Autism Speaks in the United States and took no part in the preparation of I am Autism, which reflects a view of autism which is very different – and alien - to the feelings of the majority of people in the UK including ourselves. As an organisation therefore we do not share, endorse or advocate the views expressed in it. Indeed we expressed our dislike of the poem by Billy Mann directly to him when he was in London last May.

The best way for autistic advocates to help secure change in such attitudes is by putting their views directly to Autism Speaks in the United States – as we have done. We know that they are aware of the strength of feeling that the video has aroused and have responded to this. We think it would be a great pity if this one short film were used to widen divides within the autism community, when we all share a powerful and common interest in ensuring a better future for all those affected by autism. It is for this reason that we have not put any general statement about the video on our website because we have no wish to draw further attention to it.”
Now whilst you will appreciate that I do have a connection with the NAS and it would be unwise for me at the current moment to comment further on the official statement, I do not have any connection with Autism Speaks whatever, however I did ask Hilary Gilfoy to make a statement on behalf of Autism Speaks UK distancing themselves from the video and she has obliged.

Ever since the demonstration outside Downing Street, which I took part in, against the failure to invite any autistic people to the "party" inside, I have heard rumours of what went on inside, which I am sure Dinah Murray, who was able to be on the inside would be able to substantiate, and that is that the Poem went down like the proverbial lead baloon.

Whatever we think of Autism Speaks UK, or the NAS for that matter I just wish to illustrate that even our "enemy" over here has a great deal more respect than Autism Speaks in the USA, and their kind of campaigning just does not go down well with anyone over here, even their friends. I hope that the USA learn that message as well, and that "I am Autism" is the last video of that genre that will ever be made.

I have not been able to make a video response myself, there are enough excellent ones out there already so here is an old one, it even features my favourite "whipping boy" professor "double barrel" himself being positive about autism.



13 comments:

Anonymous said...

I am extremely glad to hear that both NAS and UK AS disagree with the tone that USA AS has taken (again) in their video presentation.

Patrick
(still around but not in a very good mood recently.)

Socrates said...

Made a video especially to reply to this post.

When you have a large group of rich Americans who want to effectively wipe out nearly 2% of the male population - what's the word to use? I had to settle for Genocide. As in destroying genes.

Clay said...

Hilary Gilfoy said:
" Indeed we expressed our dislike of the poem by Billy Mann directly to him when he was in London last May."

That's what that meeting was about? And Suzanne/Mann still had the temerity, the chutzpah, the balls, the gall, to go ahead with their pet project after they were advised it was in bad taste? I should would like to hear the conversations between them now!

laurentius rex said...

Well Harry I am not sure altogether about your choice of heroes, I consider Newton to be a bit woo, give me Leibniz or Hook :)

Here is a video by reply, I wouldn't dare to claim Prince Far I as one of us, I just like the liberation sentiment.

http://www.youtube.com/watch?v=kXLizHNqbQo

Socrates said...

"Let us praise famous men, heroes of our Nation's history"

For some reason this didn't make it to the final edit...

Carole Rutherford said...

When you carry the same name and the same logo as a group who are doing their best to demonise autism distancing yourself is not enough imo.

laurentius rex said...

When you took that logo (the jigsaw piece) of a group that has since abandoned it but still holds copyright over the design you are really treading water :)

laurentius rex said...

"Let us praise famous men, heroes of our Nation's history"

For some reason this didn't make it to the final edit...

This bit did though ..

http://www.youtube.com/watch?v=DmYbKo5G4UM

Paul said...

Believe it or not folks, I just flew over to New York and talked to representatives of Autism Speaks in their Park Avenue offices.

They are years behind the Nas on its services and ideas, if they have them at all. I will be helping them find out about Prospects the Nas Aspie job agency in London, and how social groups and organised and run.

They are going to hold an event for Aspies this year, with video link ups around the USA, to find out what people want. Get a ticket everyone?

Autism Speaks says to me, they want to listen to us.

SO LETS GO TELL THEM WHAT WE WANT. Email them? Do it.

Socrates said...

Paul,

You may call yourself an Aspie if you wish (although I would suggest you are demeaning yourself)- but please don't include me in that description.

I am not the diminutive of a pathological disorder.

And the NAS do not use it in official business.

Now, Realpolitik:

This is not the time to jump into bed with Autism Speaks. Regardless of their merits in your eyes.

Trust me on this one.

OneVoice said...

Autism Speaks have more than enough bed partners. Their bed needs to be taken to pieces and burnt.

abfh said...

Paul, we have been telling them what we want for years. They have made it very clear that, just as Socrates' video says, They... Do... Not... Care.

And yes, they do have ideas, most of which are both hateful and damaging.

Instead of buying a ticket to their event, anyone who wants to bring about real change should join the street protests instead.

Also, here's a link to ASAN's petition calling on supporters of Autism Speaks to end their support for the group. Sign it and blog about it! Autism Speaks won't change anything until they start losing donations, and I suspect they're so stubborn that they won't change their ways even then.

Larry, thanks for pointing out that Autism Speaks USA already knew that many people would find the video offensive, but decided to release it anyway. Colossal chutzpah, as Clay said.

Anonymous said...

So who is up for being Autism Speaks Concubine then Paul?