Tuesday, December 11, 2007

Solidarity

Edit as of 12-12-07
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Individuals can now endorse the disability community's joint statement by going to http://www.petitiononline.com/ransom/petition.html
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Solidarity.

The autism community has gained solidarity - among many of its own organizations and those that involve other disabilities - in response to New York University's "Ransom Notes" campaign.
For those of you who have not yet seen the ads being featured as part of this campaign, please take a moment to view them here...

Read the notes - no really, go read them - allow your natural emotional response to surface. If I set all personal experience with autism aside for a moment and take a fresh look - seeing these "notes", I feel a sense of panic, of a wrong having been committed. That I need to rush to the defense of someone, perhaps come up with some cash to solve the problem. There is an implication of crime, of guilt. A need for swift justice.
I can only speak for my own son when I say ... he doesn't need this kind of publicity.

In an astonishingly misguided effort to raise awareness on Autism, Asperger's, Bulimia, ADHD, Depression, and OCD, the NYU Child Study Center has unwittingly produced precisely the result their campaign was 'designed' to combat. The response to these notes, as desired by the ad agency who developed the theme, is powerful and visceral. But it produces the wrong response. Instead of reducing stigma associated with these dosorders, it reinforces the stigma.

In a remarkable display of unity, the blogging community has stepped forward in an attempt to help provide a unified response to this egregious affront to people affected by the aforementioned group of disorders. Much of the work in doing so has been borne by one Ari Ne'eman, president of the Autism Self Advocacy Network.

Ari prepared and delivered what I consider to be an excellent response to the leaders at NYU. His response acknowledges their good intentions, but clearly and appropriately spells out just exactly why the 'Ransom Notes' campaign has been met with such resistance within the autism community. Since Ari has done such a great job of reflecting my own thoughts on the subject, I need only to shut up at this point and post his letter here.

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Dr. Harold S. Koplewicz, M.D.
The NYU Child Study Center
577 First Avenue
New York, NY 10016



Dr. Robert Grossman, M.D.
NYU School of Medicine
IRM 229
560 First Avenue
New York NY 10016



John Osborn
President and CEO of BBDO New York
BBDO New York
1285 Avenue of the Americas
New York, NY 10019



Richard Schaps, Chairman and Chief Executive Officer
Van Wagner Communications, LLC.
800 Third Ave 28th Floor
New York, NY 10022



To the NYU Child Study Center and the supporters of the “Ransom Notes” advertising
campaign:
We, the undersigned organizations, are writing to you regarding your new ad campaign
for the NYU Child Study Center: “Ransom Notes”. Our organizations represent people
with a wide range of disabilities, including those portrayed in your campaign, as well as
family members, professionals and others whose lives are affected by disabilities. As
people who live and work with disability, we cannot help but be concerned by the way
your campaign depicts individuals with disabilities. By choosing to portray people on the
autism spectrum as well as those living with OCD, ADHD and other disabilities as
kidnapped or possessed children, you have inadvertently reinforced many of the worst
stereotypes that have prevented children and adults with disabilities from gaining
inclusion, equality and full access to the services and supports they require.
While the “Ransom Notes” campaign was no doubt a well-intentioned effort to increase
awareness and thus support for the disabilities it describes, the means through which it
attempts this have the opposite effect. When a child with ADHD is described as “a
detriment to himself and those around him,” it hurts the efforts of individuals, parents and
families to ensure inclusion and equal access throughout society for people with
disabilities. When individuals with diagnoses of autism and Asperger’s Syndrome are
told that their capacities for social interaction and independent living are completely
destroyed, it hurts their efforts for respect, inclusion, and necessary supports by spreading
misleading and inaccurate information about these neurologies. While it is true that there
are many difficulties associated with the disabilities you describe, individuals with those
diagnostic categories do succeed – not necessarily by becoming indistinguishable from
their non-disabled peers – but by finding ways to maximize their unique abilities and
potential on their own terms.
The “Ransom Notes” campaign places a stigma on both parents and children, thus
discouraging them from pursuing a diagnosis that might be helpful in gaining access to
the appropriate services, supports, and educational tools. The autism spectrum should be
recognized for what it is: a lifelong neurological condition – not a kidnapper that steals
children in the dead of the night. The devaluation of the lives of people with disabilities
has led to public policies and funding decisions that have forced thousands of people with
disabilities into nursing homes and other institutions. The unintended consequences of ad
campaigns like yours give legitimacy to the taking away of the civil and human rights of
people with disabilities.
It is true that diagnoses of ADHD, autism, Asperger’s Syndrome, and OCD often
accompany great hardships for families. It is true that depression and bulimia are terrible
disorders that require treatment. Yet, the way you choose to convey those messages is
inappropriate and counterproductive. Individuals with disabilities are not replacements
for normal children that are stolen away by the disability in question. They are whole
people, deserving of the same rights, respect, and dignity afforded their peers. Too often,
the idea that children with disabilities are less than human lies at the heart of horrific
crimes committed against them. The recent tragic instances of violence against children
and adults on the autism spectrum and with other developmental disabilities are linked to
the perception that these people are less than human. We – the adults, families,
professionals and others affected by these conditions - assert that nothing could be further
from the truth.
We are also concerned that the negative stereotypes the “Ransom Notes” campaign
depicts could make it harder for the many people with disabilities and their family
members who are working to ensure that students with disabilities have the right to be
included in their home schools while still receiving all necessary services. Federal law
mandates that students with disabilities have the right to a “free and appropriate public
education” in the “least restrictive environment”. Your advertising campaign claims that
children with disabilities could be a detriment to those around them and as a result hurts
the efforts of parents working to secure the opportunity for their children to be included
with their peers.
While we recognize and applaud the good intentions intended by this effort, we must
urge you to withdraw this campaign immediately, as it threatens to harm the very people
whom it seeks to benefit: people with disabilities, their families, and their supporters. In
the press release announcing this campaign, the Center gave as one of its goals
“eliminating the stigma of being or having a child with a psychiatric disorder”. We are in
full agreement with the goal of eliminating stigma against people with disabilities and
their families. Yet, this campaign serves to increase that stigma rather than lessen it. We
hope that you will heed our concerns and those of many other people with disabilities,
family members, professionals, and countless others and end the “Ransom Notes”
advertising campaign.
Please do not to hesitate to contact any of the organizations listed as signatories to this
letter in order to better solicit the opinions of the disability community prior to your next
advertising campaign. We would be more than glad to help the Center to develop better
strategies to achieve its excellent goals. The NYU Child Study Center has the potential to
do enormous good for children and families affected by disability. By showing that the
Center respects the views of people with disabilities, families, and professionals, you can
make that aspiration a reality.


Sincerely,
Ari Ne’eman
President
The Autistic Self Advocacy Network
http://www.autisticadvocacy.org
info@autisticadvocacy.org


Bob Kafka
National Organizer
ADAPT
http://www.adapt.org/


Diane Autin
Executive Co-Director
Statewide Parent Advocacy Network of New Jersey
http://www.spannj.org/


Jim Ward
ADA and the National Coalition for Disability Rights
http://www.adawatch.org/


Janette R. Vance
The Family Alliance to Stop Abuse and Neglect
http://www.thefamilyalliance.net/


Estee Klar-Wolfond
The Autism Acceptance Project
http://www.taaproject.com/


Barbara Trader, MS
Executive Director
TASH
http://www.tash.org


Jim Sinclair
Autism Network International
http://ani.autistics.org/


Stephen Drake
Not Dead Yet
http://www.notdeadyet.org/


Stanley Soden
Director of Independent Living Services.
MOCEANS Center for Independent Living
http://www.moceanscil.org/


Ethan B. Ellis, Executive Director
Executive Director
Alliance for Disabled in Action, Inc.
http://www.adacil.org/
President
Next Step, Inc.


Phil Schwarz
Vice President
Asperger Association of New England
http://www.aane.org/
Member, Board of Directors
Autism National Committee
http://www.autcom.org/

6 comments:

jypsy said...

Sadly, not total solidarity in the autism community. A prominent Canadian "autism advocate" thinks everyone who signed that letter and everyone else "in denial" should watch the Autism Speaks video and tell those kids they aren't held hostage by autism. Another classifies everyone in opposition as "sheep". I don't know if I'm more saddened by the Ransom Notes campaign or the attitude of its supporters....

abfh said...

Steve, I've tagged you for a blogging award.

Another Voice said...

I agree that solidarity is lacking.

This ad campaign as well as the Autism Speaks video are both products of the New York advertising community. They are directed at creating controversy. They do not care if there is a positive or negative reaction, they measure success on the amount of reaction. If the person heading it ends up on TV to explain the amount of controversy created, they feel that is a home run. There is no concern for the impact of the message or ethics.

Also, there are a number of “advocates” that need to have autism painted as a horror story. It is necessary for their standing as martyrs. They wish to spend the rest of their lives sitting in a mud puddle of sorrow and if you won’t join them they will not like you. They merely say that you don’t get it, or you are a sheep. What they say makes life a little harder for everyone but adds nothing toward betterment, so they must not be allowed to use up too much time. There is real work to be done, positive improvements to be made and a lot of people who really need love. So pardon me if I walk around that puddle, or won’t join you on the bridge, I have things to do.

Navi said...

I'm not as eloquent, but I sent an email to NYU at their contact us page: http://www.aboutourkids.org/contact_us/contact_information

I am appalled

As a mother who is getting treatment for her autistic son, who has to deal with the misunderstanding of others on a regular basis, campaigns like this only serve to create greater misunderstanding. The general public has no clue, and to create such a narrow view of a spectrum disorder is highly unintelligent and misguided.

Find a shocking way to reduce stigma, not increase it.

A ransom note could say the same thing, except change son, to 'autistic son' and sign it Society.

Steve D said...

ABFH - Thank you, and I have just posted in response.

Jypsy and AV -
I agree that it is unfortunate. I have not seen the comments you are referring to, but will not be surprised when I see them.
I guess when I mention solidarity, I am referring to the 14 official organizations who have unified their efforts, and at the same time appropriately ignored 2 bloggers who will take any opportunity to take a position opposite to one that will be found here.

Nav - I love your response. Also, I did eventually respond to your comment on this post:
http://onedadsopinion.blogspot.com/2007/09/go-to-back-of-bus.html
I just want to make sure you know I didn't ignore you - it just took me a while to respond.

Anonymous said...

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

Robert Grossman, Dean & President
New York University Medical Center
robert.grossman@nyumc.org