Starting Up a Dialogue about the Ransom Notes Ad Campaign
December 15, 2007 by Kristina Chew, PhD
Filed under Health
Update: As of this Saturday morning (around 11am EST), the images of the ransom notes have been removed from the New York University Child Study Center’s webpage.
I have never taken a class in economics, or business, or marketing (I am a humanist—a teacher of Latin and classical Greek—through and through). But I know enough to know that even negative publicity is good: However provocative, harsh, and upsetting the message of the “Ransom Notes,” the ad campaign has certainly directed a lot of attention to the New York University Child Study Center. As the Wall Street Journal Health Blog notes, the center’s director, Dr. Harold Koplewicz, has found the “backlash from patient groups” to be “surprising and unexpected.” According to the NYU Center, the “campaign is designed as a provocative wake up to create awareness and spark dialogue about childhood psychiatric disorders, one of America’s last remaining silent public health epidemics.” The campaign has been (as the December 12th New York Times noted in an article) “provocative,” but what kind of “dialogue” has been sparked?
If you look around the web, there has been plenty of talk about “Ransom Notes,” on blogs by autistic adults, parents, and mental health professionals. A dialogue about how people live with autism every day and see autism as shaping, changing, affecting, altering, even enriching their lives is emerging. Nonetheless, actual dialogue with the NYU Child Study Center has yet to emerge: “Ransom Notes” is an advertisement campaign, and is sending a direct and simple (”psychiatric disorders are holding your child hostage”) message, albeit one that many do not agree with and, indeed, think is simply wrong-headed: One hopes that a real conversation about the campaign, and about what it is to live with these conditions and to live with a child these conditions, may emerge, and soon.
Here’s what is being said about “Ransom Notes”:
Odd Time Signatures notes that there are No Hostages, No Ransom. My sister autism mom-blogger Mothers Vox posts about Hostage Negotiations and asks, what would an “ad campaign to raise awareness of childhood neurological differences and social integration issues” look like if put together by the “autism parenting and autism advocacy community”? The December 13th New York Daily News looks at the “fury” over the campaign (”‘I was offended. It’s not a helpful way to think about a disorder,’” I am quoted; see this forum on Wrong Planet in response). Furious Seasons also comments on parents’ anger. Political Gateway writes about how the “ads anger parents of autistic children” with its Derangierter Nachwuchs—”deranged generation”—as Werbeblogger posts. In northern Ireland, Family Voyage comments on the dangers of stigmatising mental illness. Sister special needs mother (or “mama”) writes about the NYTimes article in Speak Softly. Saint Nobody and autism mother Susan Senator also speak out; Lisa Jo Rudy at About.com considers some different perspectives about the campaign and an autism father in New Brunswick (not the home of the Scarlet Knights, but in Canada) offers a critique of me.
Whose Planet Is it Anyway reminds us that pity is 100% curable.
Marla Baltes reminds you to sign the petition.
How far is too far? asks PsychCentral.
As my friend Kyra at This Mom writes in Tape Perimeters, or, Fear and Alternate Views of the Universe:
…. this is my issue with the Ransom Notes Campaign. They say they want to promote awareness but their actions and words comes from fear. And violence. Hostage taking is a violence. They are coming at human interaction from a siege mentality, literally, your child is under siege: what are your choices? Adopt a battle mentality, negotiate from a position of weakness, strategize, coerce, deceive, delude, attack? There is a divide. Lines are drawn. Sides are taken. It’s more them versus us.
What if we were all on the same side? What if we believed in the opposite of fear? Only love? The desire to see, understand, connect, and draw out the child’s potential while staying awake to that which makes them extraordinary?
Wide awake here, always to my extraordinary—extra-ordinary boy, who’s given me an extraordinary life.
We’ve been having a good discussion at Mothering.com’s special needs parenting forum.
http://www.mothering.com/discussions/showthread.php?t=807600
This is wonderful.
? I still see them?
The pictures came up as “Page Not Found” on my browser (I’ve checked with 2). But let me know if they keep showing—-
Sorry to spam and run but, well, here:
“New info on NYU’s “Ransom Notes” perpetrators”
http://dkmnow.livejournal.com/53229.html
[all linkage hereby pre-approved -- but it might be better to copy and paste, as my LJ account will be permanently deleted in two weeks]
Ok, your correct. When you click on the picture, it says page not found, however the smaller picture is there which is what confused me. Glad I copied them before they changed it.
On another note, I’ve been noticing that Ari isn’t getting the credit he deserves on some of these blogs/sites like Psych Central and UPI. They are wrongly saying that “parents of autistic individuals” created the petition and response and parents leading (thus making autistic voices invisible again). Parents have certainly lent their valuable voices, but it was Ari and the other groups that led the initial response and your blog, ABFH, Bev and others for keeping the issue alive as well. I just want to make sure that he gets the credit for spearheading this.
Glad to see David on this blog. He’s a fantastic doc and friend to the autistic community!
Yes, yes, about Ari—–I think he was on TV last night—just the beginning, indeed—
Thanks for those links, dkm. Please send any other information you find—-my own son had a terrible experience with Paxil.
More discussion at SchwabLearning and on the Goodyblogs forum, via the Parents magazine website.
Actually my critique was of your approach to this campaign specifically and to your approach to autism issues generally which is to tell only PART of the autism story. In Autism Vox World autism is beautiful and the real problems of those with autism especially those with severe autism who in fact hurt themselves and others, do not understand dangers in everyday life, and live their adult lives in the care of others, are not addressed. Indeed as this petition and your comments to the NYT again show you will take action to prevent the truth from being told. Pass those rose colored glasses.
Koombaya.
Thank you another description of my son; he is fond of “Kumbayah,” a song I have played for him on the piano since he could sit in my lap.
@David K. March
Some photos from the NY Social Diary that may be of interest (from December 2005).
That is great Ms Chew. I am genuinely happy for your son.
How about that 50 year old autistic woman who was repeatedly assaulted in a Long Island residential facility but could not communicate what was happening to her; assaults which were only discovered because of videos and another employee who witnessed the assaults? I doubt she will be singing along with you. Or the many autistic persons with severe autism who do NOT post on internet forums like this? I have visited a mental health facility housing autistic adults with a father who told me as were driving to the facility of finding his adult son in an isolation room with a wet hard floor clad only in a medical johnny shirt. When we arrived he was again in that room in exactly the same conditions.
Here in Fredericton, New Brunswick, Canada, (that is the big country north of the US) we have a provincial centre providing tertiary neuro-rehabilitation services for children and adults with autism disorders AND with neurological injuries arising from various causes such as automobile accidents. The autism side of the service was destined to be discontinued until some of us fought for its continuation. The reason? It was being swamped by demand for tertiary care autism treatment services.
As a linguist you know that tertiary means “third in order or rank”. In terms of health care it means
specialized intensive care units, advanced diagnostic support services, and highly specialized personnel. The cases dealt with in the tertiary care autism services included complex and serious cases of self injury including dangerous self starvation and self inflicted head injuries. The centre was swamped with demand for services for severe autism injuries.
Or how about the autistic children who run into traffic and die because they do not understand the dangers of automobile traffic. There have been reported incidents in the past year. I almost lost my own son that way a few years ago.
These stories are part of the whole picture of autism, particularly for those on the more severe end of the spectrum, those with actual Autism Disorder. It is the part of the picture that seldom appears on this forum and which you appear to want suppressed.
The NYU campaign was inspired by parental comments. Comments not made by parents out of self pity as one of your ND friends title suggest but out of concern for their children. Will you also attack and condemn the “harsh-upsetting” comments of Simon Baron-Cohen’s article in today’s TIMESONLINE where he states:
“”Autism comes by degrees. People with the milder form, Asperger’s syndrome, display communication difficulties and “obsessional” interests. In severe cases, however, it can be as if your child is locked in a glass bubble, staring vacantly past you as you desperately try to make eye-contact. The thought of never being able to fully communicate with your child, or to know what is going on inside his or her mind, can be heartbreaking.”
The very real challenges of persons with severe autism issues will not go away because you and the ND ideologues who frequent this forum pretend they do not exist. While you have succeeded in bullying the NYU people into following your marching orders there are too many concerned parents and professionals trying to actually help autistic persons who will not be so easily silenced.
Right,
And we ALL agree that better services and protection are needed.
Your child needs protection because he/she is at thier most vulnerable not being able to communicate.
My child needs protection because he CAN communicate and what is being communicated to him is that the “normal” part of him was kidnapped, that because the “normal” part was kidnapped he will have no friends and there are no options for him but suicide.
Get it now?
Kristina,
Look at that Dr. Koplewicz. He holds a fundraiser so of course he has the “right” views.
He is just all about the money.
If my “classic autism-severe autism” son (as he has been described by evaluators) were to ever be the person you describe, I would STILL NEVER trade in his dignity for my satisfaction or self pity for my position as you so willingly do. For the life of me, I can’t help but wonder how your son being described as a shell or a kidnap victim in any way will help him and why you wouldn’t as a man, and I’m talking father to father, defend your “house” against such characterization. If you think for a minute that having a billboard up describing your son in such fantastic lunacy is helpful to HIM, I can’t help but believe your not a man. Sorry, but I don’t believe in indulging your dogma. To be silent against such would in my opinion, make me less of a man and father. Some of us who happen to be diagnosed with Asperger’s Syndrome and have “classic autistic disorder” children don’t have to support your self pity expression. You sir disgust me and I’m sorry, but I believe the diplomatic approach with you isn’t helpful.
right on, kristina! what dialogue IS being generated? are we arguing the need for services, understanding, support, education, awareness, and sensitivity? no. we’re in agreement there. we need all of these things for all people, especially those out of the mainstream and those who are unable to advocate for themselves.
we ARE expressing our outrage with a campaign of fear which creates US versus THEM mentality that fractures and marginalizes. how can we come together in one room to brainstorm healthy and respectful and appropriate ways to generate awareness if we’ve pushed ‘them’ away?
it’s sad to me that when we seek to see all people as individuals, as important, as deserving of respect, we are thought to be wearing rose colored glasses.
that 50 year old autistic woman who was repeatedly assaulted needs our compassion, protection and support including a genuine curiosity about who she is and what she needs NOT drama, pity and fear.
RE: Some photos from the NY Social Diary that may be of interest (from December 2005).
And with the Wrights, no less. *sigh* So what we have here is one big high-rollers club who get their keeping-up-with-the-Joneses money by selling their face-value to megacorporations whose sole aim is to get more kids drugged. And our beloved Dr. Kopout is a charter member.
I think I’ve got the big picture now. No wonder he’s not listening to us. Who wants a photo-op with some random sicko? Have my agent get J-Mac on the phone.
(I just got a helluva lot more cynical about this … does it show? *grin* Still, thanks for the link!)
Harold,
Because my younger daughter is also on the more challenged end of the spectrum, and because I am acquainted with practitioners and the issues of the type of child/student/person you describe, I agree that those are pressing ones.
What I do not see is the direct line from this particular ad campaign with its combination of negative imagery and lack of content, to resolution of the problems, which involve many areas of medicine and education as well as many practical variables including current state of the science, ethics, law and insurance. Unless NYU has something particularly astounding behind the curtain, my guess is that the solution here might be drug prescriptions, based on some past history and the usual focus of the field of psychiatry.
As I am sure that you are also aware, even in the best case scenario where access to the best educational programs and the money to pay so are available, that outcome is variable. (For divergent theories and statistics that are even worse, please see the literature on eating disorders.) So the campaign as created was somewhat disingenuous, unless NYU has discovered a pill to eliminate the core diagnostic symptoms of autism and teach social and self-help skills. Psychotropic drugs to manage severe symptoms is not exactly breaking news but carry the possibility of significant side effects as part of the risk/benefit.
Last night, on surfing the cybersphere, I noted that there was a broad slice of people who found the campaign offensive, and for similar reasons. I suspect that after the NYT story that NYU may be getting mail from many of the constituencies identified in the billboards.
Thanks Kristina for finding that pic. This ghastly campaign has Suzanne Wright’s finger-prints all over it: She of the “autism-has-knocked-on-the-wrong-door” bravado. Wright thinks her husband’s money can protect her and save her … and buy off the “kidnappers”. Because in Wooville, as we all know, it takes lots and lots of money to “treat” autism.
Just back from NYC (Charlie went from Brooklyn to the Bowery……….). We still hold Charlie by the coat at intersections but he is learning to cross the street, thanks to his teachers (in his school ABA program—Harold, per your concern:
It might be good to work on such a program, if your teachers and therapists have not already started this. I am fortunate to live at a time and in a place when and there are teachers who (as there were not in the past; it is unclear what the fate of my son would have been 50 years ago or if we lived in a different place) are able to teach him such basic skills. (And some of these teachers can be found in “New Brunswick South” aka New Jersey— which everyone loves to make fun of; you are in good company!). ABA cannot teach everything, but it has been a good way to start on these things for my son. ABA can also be incorrectly applied and this has unfortunately happened to my son.
One often wonders, what if all the funds for those glitzy fundraisers (with giftbags etc.) were spent on ….. autistic persons.
Perhaps I have blinders on because I am also a physician, but I can’t condemn a guy just because he’s in some photos 2 years ago with a bunch of socialites and the Wrights.
As a head of a big research center, he’s the chief one in charge of pressing the flesh for money, and that means doing as many of those fund raising dinners as you can.
The actions of this campaign disgust me, but I’m hoping Koplewicz will quickly see the error of his ways, reconnect with his inner ethical self, and reverse course.
Alternatively, we’ll get to see whether the blogosphere will be able to seriously damage NYU.
Joe
“Perhaps I have blinders on because I am also a physician, but I can’t condemn a guy just because he’s in some photos 2 years ago with a bunch of socialites and the Wrights. ”
Well, I can and do. When the party’s honorees are Bob and Suzanne Wright I can condemn it. If the Wrights weren’t causing such dangerous consequences for autistic lives by their poisonous cloud of “fear awareness”, I could see your point. However, I don’t find it the least bit coincidental that Koplewicz has taken the Wright’s modus into academia. Why try to reinvent success when you can just copy it. Afterall, he consulted with his colleagues about it before moving forward:-)
As someone who routinely financed hospital expansion projects, I too routinely went to parties (a terrible requirement of the job) where there were clinical directors there pressing the flesh, networking for dollars so to speak. It is a part of their jobs of course. However, if I were at a party where someone was dressed in an offensive costume or was a notoriously offensive person, I wouldn’t pose in pictures with them nor would I make them honorees. I’ve been to plenty of parties where children with cancer attended and spoke, where children who were saved in a NICU spoke etc. I wonder if any autistic people speak at these gala’s for Koplewicz and the Wright’s, especially ones who don’t care much for their rhetoric.
Hasn’t TAAP had a few of these types of parties where autistic artists were there displaying their art? How refreshing and a better example than a bunch of pompous “do-gooders” who aren’t truly concerned with autistic lives but are simply there to show “they care”.
Really, let’s be honest here, parties that appear in “social diaries” really have one purpose, and that purpose is so all the “masters of the universe” as Tom Wolfe so eloquently described this social class, to pat each other on the back and exchange happy talk about what wonderful and charitable work they do, while at the same time paying their accountant to find any nebulous tax shelters to limit their reported income (the wife is a cpa). I wonder if the NY Social Diary would consider taking pictures at Autscape? Afterall, that’s a social gathering as well.
Club 166: …I can’t condemn a guy just because he’s in some photos…
Nor would I — as I hope was conveyed by my comment to your most recent post. But after all I had learned over the past week, the pictures’ implications were just too familiar. I’ve had a bellyfull of how so many of these flesh-pressing networks do business. Growing up in proximity to such things, I learned early to watch for elevated smarm as precursor to some looming injustice. Telling ourselves over and over that not everyone is like that may be soothing, but it doesn’t fix anything.
But then, I expect you’re the last person to be in need of my sermons. Sorry.
:-p