I went to my grandmother’s for a few days (also: caught a ride to my blood work appointment) and the timing for that was SO not right. But I think I needed it (as it’s too early to see results for a new med) as I’m feeling a lot better and more prepared to do something other than sluggishly struggle to fit thing together.
A lot has happened since I went to Grandmother’s.
A good and comprehensive round up can be found on Liz’s I Speak of Dreams. Please contribute to her round up if you have anything! Also, my friend C1audia has an open letter on her blog that Is a good read. (C1audia is awesome, and I recommend you give her whole blog a look. )
I don’t always agree with The New Republic’s style (I’m too bleeding heart), but I do agree with their latest post- and am tickled by what it has to say. First of all, A parody called “I Am Autism Speaks” was put on youtube supported by them. Here it is:
It promptly knocked The AutSpks “I Am Autism” down in youtube ranking, and caused the PR firms to panic. They’ve been tracked on the New Republic site. In addition, Autism Speaks UK has choosen to disassociate itself in the following manner:
..’The UK charity Autism Speaks is a separate entity from the US charity of the same name. Autism Speaks UK did not contribute to the making of this video and we do not share or support the views expressed in it, which are those of certain members of the board of trustees of Autism Speaks in the USA’..
I’ll try to keep up to date on this matter.
(sometime later in the evening)
So, New Republic is currently the number one Search Result for Autism Speaks on Google Blogs. (you can either click on the above link or here for a screen cap.)
I heard about this right before bed last night, and in the mean time the Autistic Community has made many valid points. Here’s the Run Down, and the Round Up
The Run Down
AutismSpeaks sent out a call for video submissions in a way that was fairly innocuous- in fact, it used language such as “a bright spot on Autism” that might indicate something positive and uplifting. You can see the call for submissions here.* This was for a United Nations-Autism Speaks conference.
Red flag number one (other than the fact that it’s an AutismSpeaks production) is the release forms.* This is for release of the footage parents submitted, and includes that the signer of the release is signing for friends and family as well as themselves. Now, I might have this wrong, but everytime I’ve worked with a photographer or with a non-profit who was taking photographs for publicity projects, if a release form was not signed by even ONE adult (or parent of a minor) depicted, the entire photo was a wash.
In this case, they might be safe as the clause does indicate that the signer is acting on behalf of everyone in the video, though it is phrased as the signer giving permission for the images of self, friends, and family. It does not say that by signing it they are saying that they have aquired permission and thus are acting on behalf of said friends and family. So even if a friend or family member did not give informed consent (if an adult, or parent, have read the release and consented to the signer acting on behalf of the party) it ends up being the signer’s fault and is sealed by this final phrase: “I further represent and warrant that I
have the right to give this consent and no other consents are required.”
Wording means everything in legalese.
The form also uses wording that would tip off some people, such as “global health crisis of autism” but perhaps not your general parent, particularly those of newly diagnosed children.
The actual video is. . . well, the only word I can think of is “appalling” and even “blatently Offensive.” (If you don’t think you can handle the video, the wonderful Codeman38 has transcribed it on the Livejournal Aspergers community.)
My response (in 500 chracters or less, as that’s Youtube’s character limit):
I find this video offensive, not only on behalf of myself, but also on behalf of my grandmother, an Aspergers Autistic, several Aunts, and even my cousin (Dx’d HFA, now Dx’d Aspergers due to early social supports and encouraging interests in sports as a family).
I am offended on behalf of my mother, whose love & pride & acceptance of ALL parts of who I am allowed me to progress even when instructors and Support Staff said I’d fail.
I am offended, & must say that AutSpks does NOT Speak for me.
I’d encourage you to go ahead to the site link and leave a comment and/or rate DOWN this video.
I’d like to additionally add that I’m disappointed in both Alfonso Cuaron and Billy Mann for their involvement in this. I have in the past admired Cuaron’s style, so this was even more of a disappointment for me. Shame on you both.
Community Response (Or the Round Up)
The community has had a huge response. Here are some responses (and feel free to link me to others!)
Cat in a Dog’s World has a fabulous response with some ethical questions and why we object.
ASAN has issued a press release on the matter.
ASAN of Northern VA has an analysis of the video worth reading.
The afore mentioned post by codeman38 in the Aspergers Community on LJ.
Kowalski has some parody suggestions!
LeftBrainRightBrain has several posts on the topic.
Asperger Square 8 Has some Counter-Advertisements.
Club 166 Comments on it extending the Ransom Notes hoopla.
DJ has written an excellent post that includes an “I Am AutismSpeaks” script.
Codeman38 has posted on his own blog.
-I left to visit the afore mentioned Grandmother, and it went on!
* I have saved these to my harddrive in case of site take down.
Earlier today, ASAN sent ASA York the following letter:
To the Autism Society of York, Pennsylvania:
The York, PA Autism Society has a well established history of working to advance understanding and support for families in the York and Adams county area. Your involvement with the HOPE playground, your extensive Spanish language resource list and your other activities set positive examples for other organizations throughout Pennsylvania. It is with this history of positive efforts in mind that we are forced to express our grave concern after having been contacted by a number of Autistic adults and family members about your current billboard campaign depicting Autistic children as kidnapping victims.
For decades, autism has been regrettably associated with fear and stigma. In the early years of the autism community, Bruno Bettelheim’s characterization of mothers of Autistic children as at fault for their child’s neurology ruined lives. In later decades, the same fear, stigma and constant search for blame persist even as science has discredited that particular causation theory. As we, Autistic adults and youth ourselves, attempt to assert our voices in the national conversation about us, we find ourselves characterized by those who often speak on our behalf as though we are burdens on society and individuals devoid of the full measure of personhood and humanity. Such mischaracterization threatens our efforts to be included in our homes, our schools, our communities and our collective society. By making the autism message one of fear, stigma and hostage-taking rather than one of civil rights, inclusion and support for all, our desire to be recognized as full and equal citizens in our communities is hurt.
The use of stolen-child imagery is one of many common motifs in autism awareness advertising. Unfortunately, it serves to send a message that Autistic people are less than fully present in our own bodies and are less than fully human. Such characterizations are frequently utilized to justify violence, prejudice and segregation against Autistic adults and children. The autism and Autistic communities deserve better than this.
It is due to these concerns that we respectfully request that the “Kidnapped” bill boards be taken down. We stand ready to work with you, the Autistic community of Pennsylvania, and any other interested parties to formulate an ethical replacement that sends a message of hope and support to Autistic people and our families rather than one of fear and dehumanization. Whatever awareness these billboards may bring, it is more than outweighed by the stigma and ignorance they add to a public conversation about autism that is already too full of such things. We believe that, working together, a better solution can be found.
Due to the public impact- locally and throughout Pennsylvania – we request a response no later than three business days (Thursday, August 20th). I can be contacted at firstname.lastname@example.org and by phone at 732.763.5530. Our Pennsylvania director can be reached at email@example.com. We request that you include him in your response.
Autistic Self-Advocacy Network
Not long after, ASA York replied.
Dear Friends in the Autism Community,
Regretfully it has been brought to the attention of the Autism Society of America – York Chapter – that our recent billboard campaign has caused undesirable confusion within the community. The intention of the billboard campaign was aimed at generating awareness to the general public and was in no way created to cause a malicious stir within the community. As a parent of a severely affected nine year old with Autism I can truly understand your passion regarding advocacy and respect for our children.
We thank you for your thoughts and concerns. I apologize for the misunderstanding and want you to know we will promptly remove the billboard posting.
President ASA York
Short version: ASA York will be removing the billboards, thanks to the efforts of a number of people e-mailing and calling them this weekend. We have been able to join together as a community to voice our concern, and were heard. In a single weekend. How cool is that?
If you’d like to thank Amy Wallace for her prompt response that answered our concerns, her e-mail is firstname.lastname@example.org . Considering some of the local community projects that ASA York has participated in, it looks like we could see more community involvement to come.
Some of you might remember the Ransom Note Campaign that NYU Child Study Center ran briefly in December of 2007. Briefly because the disability community, 22 Organizations including ASAN, objected to conditions ranging from Autism to ADHD to Depression being depicted as kidnapping or possessing children. They were swiftly removed.
And it got a good amount of publicity, both within the disability community and in the MSM. A victory won, and after such coverage It should be obvious that this sort of analogy is inappropriate at best, damaging at worse.
I’d like you to meet York county, PA’s ASA chapter. Or rather, thanks to Club 166′s post,(and subsequent letter), their most recent billboard:
want a clearer image? well, it’s up on their website, too, with the oh-so-descriptive note of “Several new billboards can be seen around York….”:
Hm. Okay, so it’s a parent quote, but why would this seem like a good idea in light of recent events? Even if this is something the parent said out of desperation at a support group meeting, why would it be okay to plaster on a billboard where everyone could see- including the children whose lives it is speaking so derisively about? (I’m leaving alone the larger question of why any parent dealing with ANY child with a disability feels so alienated as to feel this desperate for now.)
Right now, I’m working with ASAN to gather more information and organize a PA reaction to this. We are hoping to get them to take these billboards down- and hopefully to understand why they weren’t appropriate in the first place.
Right now, we are in the first part of this process- ASAN has sent a letter to ASA about their York chapter and we’re working on one to ASA-York to be sent in the next few hours.
If you, as an individual or as part of an organization, would like to contact ASA York to let them know how you feel about the bill board, here’s their contact info:
e-mail 2: email@example.com
Phone Number: 717-801-1272
Please remember to be polite when contacting them. If you choose to call, make sure it’s in normal business hours EST (New York Time) and be polite- no foul language, etc. Just a straight forward statement of complaint, short and sweet.
I’ll keep you updated if I discover any more information, and on any further actions we attempt.
EDIT: Since posting this entry, the announcement on the launch of the billboards has been purged from the ASA-York site. If I obtain further info, I will post it tomorrow in a new entry.