The Law of Unintended Consequences: In the Wake of “Ransom Notes”
December 21, 2007 by Kristina Chew, PhD
Filed under Health
“Ransom Notes” has come and gone: Some in the advertising world are noting that the ads were just “too hot to handle.” The December 20th The Scientist posts that Psychiatrist kills ads to pay ransom. And now, as Club 166 reminds us, comes the hard part. As one commenter asked, what would be an “effective public awareness campaign for child mental health”—-a campaign that would not only address issues of treatment, but of access to care?
What about medication for children? Furious Seasons notes that the FDA’s psychopharmacologic drugs advisory committee lacks a consumer representative: Do parents of autistic children and autistic persons think they should have a say in this? (Just yesterday morning, after a holiday party with Charlie’s class, the mother of one of his classmates and I got into a detailed discussion of, yes, medication—something that Charlie already takes, something that my friend is now weighing for her child.)
Speak Softly has a thoughtful 5-point list to take to the “town hall meeting” that Dr. Harold Koplewicz has proposed. Her first two items get right to the point: “Nothing About Us Without Us” and “People First Language.” I’m suspecting that few of us don’t know who Ari Ne’eman is now: You can hear him on two radio interviews by going to the homepage of the Autistic Self-Advocacy Network (ASAN).
As Sue Etlinger writes at Momformation, the “law of unintended consequences” has been at work:
The controversy provided a platform for people with autism and other differences to participate in and direct the conversation about how they are characterized in the media and in our culture.
And now that we’ve started it, we’ve got to keep that conversation going.
The New York Times‘ Judith Warner posts on “Ransom Notes”; she interviews Dr. Koplewicz and notes the implied blame in the ads:
And it looks like Judith Warner missed the point.
Making parents feel guilty was not what was essentially wrong with the campaign. Maligning and stigmatizing those with the conditions described was what caused the uproar. I, like most parents, would let people call me whatever they wanted, if it meant that my son would be treated with the respect he deserves, and be fully included in society.
Joe
I read Warner’s post, and was surprised how much, indeed, she missed the point. It wasn’t as if the complaints were even about the parents, they were about the individuals with the relevant conditions. And, clearly, there’s no intention to listen to those individuals. Amongst the things she missed was how the ads actually promoted stigma and that the primary motivation wasn’t simple guilt. I just hope that some good discussion can come from this.
Cliff
I was hoping that she might have noted who the main advocates were—-self-advocates like Ari Ne’eman, Not Dead Yet, and other disability organizations.
Correct, Warner totally and completely missed who the star advocates were.
It’s like a curse from Bettelheim: No matter what, whether they’re refrigerators or martyrs, it all has to be about the parents.
My complaint to the Center was on behalf of my son. Like many here, I was worried about how the ads portrayed him, not me. I’m already doomed, my reputation as normal sullied years ago.
There was an implication of guilt in the ads, though. The implied message being, “if you ignore this warning (”ransom note”), you will be guilty of your child’s suffering”. I don’t doubt the Center got a plethora of complaints about this. Personally, though, I found this part of the message a secondary problem.
Anon_two,
I appreciate the point; I’d have been much happier had the self-advocate role in our victory been better covered. Actually, I recently presented a paper in Atlanta saying exactly what you just did. Kristina was also on that panel, so she probably remembers it. Here’s an excerpt:
“Dr. Bruno Bettelheim is famous (and infamous) in autism circles as the originator of the “refrigerator mother” theory of autism causation, stating that autism results from mothers who were cold towards their children…In his book The Empty Fortress, Bettelheim opens by stating that, “Much of modern psychology seeks to know about others; too much of it, in my opinion, without an equal commitment to knowing the self. But I believe that knowing the other—which is different from knowing about the other—can only be a function of knowing oneself.” This quote is highly indicative of Bettelheim’s approach towards autism research. The reason that he came to believe that mothers were at fault related to the perception that the autistic children he treated behaved in a fashion empty of any human self. Beginning from this questionable starting point, he sought to project his own experiences as a prisoner in the Nazi concentration camp of Buchenwald. In the eyes of his autistic patients Bettelheim, “recognized a terror that he himself could never forget—the terror of someone placed in an environment that seeks to destroy him without his knowing why or whether he will ever escape” (Sutton). Using his own experiences as the foundation for his ideas about autism, he theorized that autistic children were responding to a lack of emotional contact from their mothers by rejecting their sense of selves. Unsurprisingly, given his methods, he was dead wrong. Thus began a long and damaging history, both of defining autistic individuals primarily by how they compare to neurotypical individuals and of utilizing highly inappropriate and offensive metaphors to suggest that people on the autism spectrum lack a sense of self, or even an authentic self. The overarching message of most portrayals of the autism spectrum and the people on it reflect a tragedy that robs humanity, leaving behind something –someone – that must, implicitly, be sub-human.”
http://case.edu/affil/sce/Texts_2007/Ne‘eman.html
Too little too late?
It took Harold Koplewicz too long to realize that hurting people you want to “help” is not acceptable collateral damage. We should write these officials to thank them for pulling the ads and request that they keep an eye on Dr. Koplewicz to make sure he doesn’t try anything this dirty again to drum up business in the name of public awareness:
Kenneth Langone, Board Chairman
New York University Medical Center
ken@invemed.com
Martin Lipton, Board of Trustee Chairman
New York University
mlipton@wlrk.com
John Sexton, President
New York University
john.sexton@nyu.edu