Kidnapped by Autism: Making Noise about “Ransom Notes”

A number of readers expressed at least disagreement and often outrage at the New York University Child Study Center soon to be launched Ransom Notes public awareness campaign, whose message is that Millions Of Children [are] Held Hostage By Psychiatric Disorders. Billboards and advertisements in magazines (including New York Magazine, Newsweek, Parents, Education Update and Mental Health News) and in kiosks will start appearing in January. The “Ransom Notes” campaign is provided pro bono by BBDO, a worldwide advertising agency network with headquarters in New York—-though, as I wrote in a previous post, the shock value ads—which are designed to look like an actual ransom note and signed “Autism” or “Asperger Syndrome” or “ADHD”—are designed to startle, alarm, threaten, and get people to do something (hand over the ransom, er, donation, is my assumption).

How we talk about autism—how we talk about autistic persons—directly impacts on how the public, how people, think about autism, and how they perceive and act towards autistic persons. Implying that an autistic child is like a child who has been kidnapped—-is a child who has been kidnapped—recalls older stereotypes of autistic children as “caught” and “imprisoned” in an “autistic shell,” and their real (normal) self “trapped” inside. It is not too hard to find references to autistic children that use such language, as in this commencement speech presented by Autism Speaks co-founder Suzanne Wright on May 15, 2007: 

There is a beautiful little boy in my family who has been kidnapped by autism.

I am writing a letter to send to the Director of the NYU Child Study Center, Dr. Harold S. Koplewicz. The Autistic Self-Advocacy Network has sent out a call for letters, along with contact information. 

This campaign, which is expecting over 700 million impressions over the next four months, is highly inaccurate and spreads classic stereotypes against individuals with disabilities. There are a number of problems with the advertising campaign:

* The ads stigmatize people with disabilities by suggesting that we are a ‘detriment to ourselves and those around us.’

* The ads make people with disabilities feel shame and embarrassment.

* The ads contain inaccurate information: For example, while people with diagnoses of autism and Asperger’s often have difficulty with some forms of social interaction, we are not incapable of it and can succeed and thrive on our own terms when supported, accepted and included for who we are.

* The ads suggest that our true selves have been “kidnapped” by terrible “diseases” and that we need urgent treatment to become normal again. This “stolen child” stereotype has been associated with horrible abuses against individuals with disabilities, ranging from social cruelty to beating, electric shock and even murder.

* The ads do not inspire parents to bring struggling children to professionals for diagnosis and appropriate treatment but instead just make parents terrified that their children are doomed and destined to have horrible, sad lives.

* The ads convey an incomplete and inaccurate picture of the diagnoses they purport to represent; they fail to show the many strengths and abilities of the individuals with those diagnoses. They fail to show the opportunities for support, education and resources that the NYU Child Study Center should be offering to parents and individuals with disabilities.

It is extremely important that we let the NYU Child Study Center know that its language is unacceptable and encourage them to pull the campaign before it does irreparable damage to people with disabilities everywhere. As an organization of adults and youth on the autism spectrum, the Autistic Self Advocacy Network is working closely with self-advocates, parents, professionals and other concerned citizens from throughout the disability community to implement an organized response. However, our time is short and we need you to make your voice heard immediately. Below you will find contact information for the NYU Child Study Center, the director of the NYU Med Center and a number of businesses who have donated time, ad space or other resources to the campaign. We’ve provided a sample template for your letters but please feel free to substitute your own words and to call the Center and their supporters over the phone. If you use our template, please make sure to delete the sections you will not be using within the bold-bracketed components. Once again, the need for action on this is immediate, so please write and/or call now.

Thank you all for your efforts and please feel free to pass along this message to other individuals and groups. We will keep you informed and we ask that you please e-mail any responses you receive to info@autisticadvocacy.org so we can coordinate our response to this offensive advertising campaign.

Best,Ari Ne’eman

The Autistic Self Advocacy Network, President

http://www.autisticadvocacy.org

info@autisticadvocacy.org

732.763.5530 


Sample Letter Template:

Dear [Dr. Koplewicz/Van Wagner Communications/BBDO]:

I am writing to express concern about the NYU Child Study Center’s recent “Ransom Notes” campaign. Your statements about people on the autism spectrum and with other disabilities are inaccurate and offensive to me as [an individual with a disability/as a family member of an individual with a disability/as someone interested in seeing respect for individuals with disabilities] and as a concerned citizen. I urge you to pull the advertising campaign immediately from all venues, ranging from billboards and kiosks to print and online advertisements, and to take steps to ensure that the self-advocate community of adults with disabilities is consulted prior to future public relations efforts.

The NYU Child Study Center’s reputation with parents, professionals and individuals with disabilities suffers as a result of the inaccuracies and negative stereotypes promoted in the “Ransom Notes” campaign. These ads will not encourage parents to bring their children to your center, or any center. Rather, these ads will make parents afraid and ashamed of their children, resulting in more children going without helpful services and interventions. These ads are also a slap in the face to both the many youth and adults who survive and thrive with the diagnoses being so inaccurately described and to the many self-advocates, parents and professionals who have worked hard to change the public image of these disabilities so that youth and adults with disabilities can be fully included and accepted in school, at home, at work and in the community at large. I urge you to apologize to the disability community and to take immediate action to remove the offensive material from the public eye.

Thank you for your time and I hope to hear from you soon.

Best,
[Fill in Name Here]

Contact Information:

NYU Child Study Center:
Dr. Harold S. Koplewicz
Phone: 212-263-6205
Fax: 212.263.0990
Dr. Koplewicz’s E-mail: Harold.Koplewicz@nyumc.org
Communications Department:
Beth Rowan, Director of Communications
212.404.3757
Beth.Rowan@nyumc.org
NYU Child Study Center
577 First Avenue
New York, NY 10016

This is the NYU Child Study Center website: http://www.aboutourkids.org/

In addition, please take the time to copy Michael Statfeld Recanati at mrecanati@aol.com and Ira Statfeld Recanati at istatfeld@aol.com on your e-mails to the NYU Child Study Center. Mr. and Mrs. Recanati are the donors responsible for the creation of the NYU Asperger Institute. You may also want to contact Dr. Robert Grossman, Director of the NYU Medical Center, which has control over the NYU Child Study Center. He can be reached at 212.263.3269 and by e-mail at Robert.grossman@nyumc.org

Mr. and Mrs. Recanati and Dr. Grossman are NOT responsible for the offensive advertising in the “Ransom Notes” campaign but they are in a position to stop it. As such, if you choose to write to them directly, we encourage you to be cordial and polite in explaining our concerns and encourage them to place pressure on the NYU Child Study Center to pull the “Ransom Notes” campaign.

BBDO New York:
BBDO New York designed and contributed the advertising for the NYU Child Study Center’s “Ransom Notes” campaign. Please contact them to express your displeasure and explain why these advertisements are so offensive to individuals with disabilities.

John Osborn
President and CEO of BBDO New York
BBDO New York
1285 Avenue of the Americas
New York, NY 10019
(212) 459-5000
John Osborn’s e-mail: john.osborn@bbdo.com
Press Relations at BBDO: laurie.ben-haim@bbdo.com

Van Wagner Communications, LLC:
Van Wagner Communications, LLC has donated significant billboard and kiosk space to the NYU “Ransom Notes” campaign. Please write and call to their New York office to explain to them why these advertisements are so offensive to individuals with disabilities and to urge them to withdraw their support.

Tel: 212.699.8500
Fax: 212.699.8521
hfriedman@vanwagner.com
47-50 Van Dam Street
Long Island City, NY 11101

Van Wagner has another address and phone number here:
(212) 699-8400 phone
(212) 986-0927 fax
Richard Schaps, Chairman and Chief Executive Officer
Van Wagner Communications, LLC.
800 Third Ave 28th Floor
New York, NY 10022
This is the Van Wagner website: http://www.vanwagner.com/

Share This Post:
    • http://autisminnb.blogspot.com/ Harold L Doherty

      When will you be publishing a list of banned words and expressions so that parents who are busy trying to help their autistic children will not inadvertently cause offense?

      As I understand it the following words are now Politically Incorrect in discussing autism:

      disease
      disorder
      treatment
      cure
      deficit
      severe
      high functioning
      low functioning
      behavioral deficit
      intellectual deficit
      mental retardation
      institution
      dependent
      disabled

      Are there any other expressions or words that have been decreed inappropriate for use by parents and care givers trying to help autistic children and adults?

      It would also be helpful if you could publish a list of acceptable words and expressions.

    • Another Voice

      It truly breaks my heart to see the things that are said behind the mask of “awareness”. The long term damage done to the perception of the autism community is overwhelming. The really sad part is that the shocking statements are being generated from within the community and sent to the general public. We worry about societies’ perception of people with autism, about being stigmatized and devalued. The stigma is being generated by those who rightly should be there to serve and protect. John Q Public would never dream up these statements on his own.

      How would Dr. Koplewicz feel if upon being introduced he were to offer his business card and it was refused because I found him hollow and an empty shell. I am sure he would not refer to me as hard hitting and effective. I doubt that caring and concerned would be words used to describe me.

    • http://www.youtube.com/profile?user=christschool christschool

      Mr. Doherty,

      You never seem to agree with anything on this blog, so why do you constantly read it? I certainly don’t read yours nor comment on it because I don’t feel as though I will learn anything from it. If your not learning anything, your wasting your time and everyone else’s by posting here.

      It’s one thing to disagree with something someone wrote and give your arguments, its quite another to use passive-aggressive language to demean. Your comment was nothing but blograffiti and “stinked” up the level of discussion. It was literary flatulence.

    • alyric

      Well said Christschool – so no need to say any more – good.

      Ari is so much more polite than I am but what I wrote to Grossman was exactly the same message. We’ve been working for years to break down the stereotypes and here comes this advertising in wonderland style of campaign and we’re back to square 1. And all through the efforts of the medical profession – who’d a thunk it????

    • http://www.autismvox.com Kristina Chew, PhD

      We in New Jersey do tend to err on the side of political correctness—”Happy Holidays” and so forth.

      I would have to say, whoever thought up the “Ransom Notes” campaign, is not worried about being pc.

    • http://crimsonthoughts.spaces.live.com/ Cliff

      I’m not sure that it’s always just a PC issue, it’s moreso an issue because the underlying ideas are actually at stake, not simply the representative terms. It’s a different matter if someone uses a term and doesn’t mean the connotation. But that’s not really the point anyway.

      If it was just the small details, I might have even been sympathetic to understanding the position of the presenter… but I’m not one for blatant fear-mongering. Or defamation. It’s certainly not one to promote a complete, balanced view of the subject.

      I’ve sent am sending out my own little letter, though I am not optimistic on the point that it will be read in any real way. But that’s life.

      Cliff

    • http://www.autismvox.com Kristina Chew, PhD

      To say it’s just about using “PC” language underemphasizes the issues, yes—-the language in the campaign has an underlying tone of violence that troubles me. If the intention was to get attention for the NYU center, that is certainly happening—-seems that there could be a better way to make this occur.

      May I ask what you wrote in your letter?

    • http://www.marlabaltes.blogspot.com Marla

      Thank you for sharing your letter and taking the time to write this. I will get mind done and sent as soon as possible! I imagine they have spent the money for the advertising and won’t back down. But it never hurts to try.

    • Leila

      I wrote to their Press/Media contact. Besides the scary, sensationalist tone of their messages, the underlying idea of the campaign is that NYU would have a magic cure that would free this children from the psychiatric disorders, and parents who don’t take them there are being negligent. Last I checked, there is no cure for those lifelong disorders, and the best we can do is manage the symptoms with therapies and medication, with mixed results depending on the case.

    • http://deleted Leila

      “these children”

    • http://bigsisterlittlebrother9497.blogspot.com/ Misha

      This campaign has to be one of the most offensive things I’ve ever seen. My children are not being held held hostage by their disabilities. It’s the the ignorance and fearmongering displayed in these ads that’s the detriment to autistics and those around them.

      Both my daughter and I are writing letters. She happened to catch a glance of the autism “ransom note” over my shoulder when I was reading through blogs and was thoroughly disgusted by it. I showed her others and having ADHD herself she was immediately insulted and offended.

    • http://aoskoli.blogspot.com/ VAB

      Thanks. I had already written through their web contact form, but this made it easy to write to a specific individual, and faxes tend to get notices more than web forms.

    • Sarah Bertovich

      Hi,
      This letter is great! I’ve been in touch with the Asperger’s Association of New England this week trying to organize a letter-writing campaign. They are quite outraged with the whole thing as well.

    • http://therunman.blogspot.com jypsy

      And what do they think? From a reply I got:

      “The strong response to this campaign is evidence that our approach is working.”

      Oh?…

    • http://maternal-instincts.blogspot.com Niksmom

      To clarify a point someone raised…the work was done pro bono and ad space donated as well.

    • Sarah

      Thanks, Kristina. Great letter. I got the same response as jypsy (I think) and was quite appalled. Dr. Koplewicz just doesn’t seem to get it, but maybe if enough parents and people with said conditions write he will.

    • http://kaisautism.blogspot.com/ xtiluv

      I worry about the damage that these ads will do to the families of the newly diagnosed. I know that I personally had a lot of anguish over misconceptions about autism when my son got his dx. I had visions of a child unable to love his family that eclipsed the child I saw before me. When I was able to look past the panic, I saw my wonderful, intelligent son standing there, loving me as he always had. I was able to reassess our situation relatively quickly, but the pain caused by miseducation about ASD was immeasurable. I really hate the thought that these ads will perpetuate these fallacies and cause more pain to autism families and autistics themselves. Not only will I send in my letters, but I will ask my extended family and friends to do so as well. Thank you for bringing this to my attention.

    • http://www.rettdevil.org Kassiane

      Doherty,

      You never did answer your criteria for hf vs lf.

      Till you do, kindly put a sock in it.

    • Regan

      Thanks for the email addresses. (My exasperated observation is that they seem to be saying in reply that getting mail means that the campaign is being noticed, and isn’t that grand.)
      My daughter, who has been diagnosed with ADHD, and has already on the standard treatments itemized the website, and…still…has…ADHD, went into a funk seeing the ads over my shoulder. “I don’t know what to do, are we doing enough? Do people think this about me?”. So we’ve had a *nice* couple of hours discussing with her that some people believe that eliciting fear and panic is an effective way to get attention and play on those emotions to steer people towards a point of view, but that there is no way that they know anything about her, and that this is an insensitive an poorly thought out campaign.

      Since perception is in the eye of the beholder, what might these alternatively be saying,
      # YOU are a detriment to yourself and those around you. Ignore this and you will pay. ADHD.

      # YOU have no ability for social interaction and are headed for a life of complete isolation. It’s up to your parents to do something. Asperger Syndrome.

      # YOU will not be able to care for yourself or interact socially as long as you live. This is only the beginning. Autism

      # YOU are being forced to throw up after every meal you eat, and it will get worse. Bulimia

      # YOU are in prison in a maze of darkness and there is no hope or ever getting out. Do nothing and see what happens. Depression. (BTW–nice message to someone who might currently be in a major depresssion).

      # YOU are being made to wash your hands until they are raw, every day. This is only the beginning. OCD.

      Besides the fact that none of these things are as stereotypic or one-dimensional as the above, I believe that it is possible to the person in the midst of depression or bulimia, who has ADHD and is on the autism spectrum this ad campaign characterizes them as victims or robots, at the mercy of, and summed up by their psychological diagnosis, regardless of positive qualities, familial love or even what may already have been done. As a campaign, I see it doing more harm than good. Fear does not necessarily inspire strength or an approach of reasoned thoughtfulness. I hope that they reconsider this media campaign before it goes into the general public. I doubt if they will, since they seem to be very self congratulatory at this time.
      (Tell me now who lacks a “theory of mind”?)

    • http://www.rettdevil.org Kassiane

      Regan, is your daughter old enough to write what seeing the ads made her feel like?

      Maybe if the kids they’re “helping” told them how bad their “awareness” made the kids feel, the self congratulatory “normal” big wigs would shut up and listen.

    • Lurker

      I don’t think the outrage over the awareness campaign is really about the lack of clarity and imprecise portrayals, but is over you people not wanting the horrors and misfortunes to be publicized. Those few times you ever discuss the deficits, you make it obvious that you don’t think those problems matter, that they can be overcome without any real intervention, or that the people with the deficits would feel fine if people didn’t mention them and were just accepting of them.
      You argue with an assumption that competence and ability aren’t valued by people in determining their quality of living, and that the dependence coming from lack of ability doesn’t itself bother people. Its no skin off your noses and you want most of the ability for yourself. I don’t know who you people will be successful in further indoctrinating, but they will probably be people already having tendencies towards such oppressive thought.

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    • http://crimsonthoughts.spaces.live.com/ Cliff

      I’ve posted my letter on my site.

      I doubt it’s going to be taken seriously, but what is is. We’ll see if anything happens in the long run, though.

      Cliff

    • http://www.autismvox.com Kristina Chew, PhD

      Lurker, Regarding the “everyday” of life raising an autistic child — what some term “horrors” etc.—I’ve tried to address this in previous posts such as this one on kaka (this word means “bad things” in ancient Greek) and also in my former weblog, My Son Has Autism. The ad campaign is sensationalistic and seems designed to get attention, without considering the message that is being communicated about autism and other disorders: The “ransom notes” theme suggests that these disorders, and so the persons with them, are to be feared and even shunned.

    • Lurker

      Well, the ad campaigns should be more about getting people well informed besides just making lurid statements about autism. There isn’t much point in drawing all of that attention to it if people won’t find more out about what the circumstances are like. Many people have heard the basics already. I hope there isn’t much of an idea in the ad campaign that the persons with the disorders are to be feared. If there is anyone to be feared or even antagonized regarding the conditions, it is certain people who have adversely affected their lives.

    • http://www.autismvox.com Kristina Chew, PhD

      The ad campaign is directed at some lurking fears among the public—I suppose it could be said that it brings those fears right to the forefront. But there’s no hope implied; the basics are what is communicated and I’m not sure the disorder/disability can be separated (among most) from the those who have a diagnosis.

    • http://www.rettdevil.org Kassiane

      The ad campaign sounds like it was written by people who know nothing but the negativistic stereotypes about the conditions, have never MET anyone with the conditions, and assume they never WILL meet anyone with the conditions.

      Writing a hysterical factless horrormongering campaign to get money is easy. They’d have had to crack a book to get actual accuracy.

      Disgustedly yours,
      Kassiane

    • Regan

      Kassiane,
      My daughter is old enough to write, if she wants to, I let her know that I have the contacts.
      I think the frustation for me earlier, and now as a matter of fact, is that we all know that she has ADHD, and have followed the standard treatment model. Some parts of it have improved some aspects, and some of it was a rocky road because of medication side-effects that led to more problems than they solved. But she was NEVER a detriment.

    • http://www.rettdevil.org Kassiane

      No child (or adult) is ever a detriment.

      That educated adults can even think of representing them as such-to their faces, no less-is truly appalling. It’s like they cut themselves off from the consequences of their own actions…

    • http://www.autismvox.com Kristina Chew, PhD

      Or maybe those who came up with the campaign are all too aware of how negative it is—-and that’s an asset (in their view—a way to get attention).

    • http://www.rettdevil.org Kassiane

      If that’s the case, they’re honestly not safe to work with people with these conditions…the whole working to expectations thing.

    • anon_two

      Those who always drone on about “you people” are mostly always bigots.

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    • http://www.midnightinchicago.com Elyse Bruce

      Mr. Harold L Doherty,

      I can assure you that Asperger Syndrome does not “rob children of the ability to learn, make and keep friends and enjoy life.” Ignorant people who refuse to treat individuals with autism with the respect due any individual are responsible for robbing children — and adults — with Asperger Syndrome of the ability to learn, make and keep friends and enjoy life.

      I know a great many people with ASDs, including my 12-year-old son, Lewis Schofield, and I can assure you that when you treat the individual with respect, it is amazing what you learn about life in general and yourself specifically.

      Rather than rail against those who stand up against skewed and inaccurate representations of individuals with autism, you should open yourself up to the beautiful realities of kindness.

    • http://djdialogue143.blogspot.com/ DJ

      Greetings,

      I wrote my letter of complaint last Friday and was told by Dr. Koplewicz that
      “”Ransom Notes” may be shocking to some, but so are the statistics: suicide is the third leading cause of death among young people ages 15 to 24, and serious emotional problems affect one out of 10 young people, most of whom do not get help. The strong response to this campaign is evidence that our approach is working. We acknowledge the challenges faced by individuals with these disorders and their families. We hope to both generate a national dialogue that will end the stigma surrounding childhood psychiatric disorders and advance the science, giving children the help they need and deserve. We want this campaign to be a wake up call. Please join the dialogue.”

      I’d like to know how this consistent demonizing of disabilities is really generating any benefit to the people they are supposedly trying to help. Spreading stigma, because that’s all the people are going to see, despite what the motive is, only serves to generate more stigma.

      I would like to ask Mr. Doherty how he would mind being portrayed the way autistics generally are? Would he feel good about who he is if rhetoric of this nature was directed at him every single day from the media, his parents, other parents, the general public and medical professionals? How would he like it if his doctor treated him the way so many doctors treat us? Would he be *wanting* to interact in a world that hates him so and has no place for him? Would he want to live?

      I find it interesting that Dr. Koplewicz mentions suicide stats. Is treating people like terrorists really helping people to *not* want to commit suicide? If he believes this then there is some serious flaws with his logic. Demonizing people does not make them happy, does not make them feel good and is more likely to cause people to want to end it all.

      It’s not about political correctness, it’s about people’s feelings. Surprise, Mr. Doherty and those who think we are emotionless, incapbable of thought or “oblivious”: autistics *do* have feelings and I for one am feeling pretty darned offended by this campaign and the general rhetoric that is directed at us every day.

    • http://www.notdeadyet.org Stephen Drake

      I’m just starting to get back into a work rhythm after two months of travelling and dealing with family health stuff…

      Two things struck me after a little investigation and thought.

      On the “about us” section of the “aboutourkids” site (http://www.aboutourkids.org/about_us/institutes_programs) it says that they use their public education programs to “work to eliminate the stigma associated with mental illness.” I’d like an explanation of how the idea that autism, aspergers, adhd, etc. is stealing your kid “eliminates” stigma – and that’s aside from the mislabeling of these disabilities as mental illnesses.

      I’m increasingly disgusted at how cynical and exploitative this campaign is. The aim of this campaign is – obviously – to gain attention and donations for the Center at NYU. Using the metaphor in this “public education” campaign – that of a ransom demand, it really puts the Center in the position of the one collecting the ransom money.

      But I guess that in some people’s ways of thinking, there is no such thing as sinking too low as long as you believe your cause is a good one. And you benefit financially.

    • http://www.midnightinchicago.com Thomas D. Taylor

      I wrote a letter stating my displeasure about this “Ransom Notes” campaign, and made it a point to post information on how to write protest letters in all my online Aspie web forums.

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    • http://www.thomaspages.org/bloggg Moi ;)

      I just saw this – this is incredible….

      Scaring people is NO way to entice them to get their children Dx’ed!!!

      “The strong response to this campaign is evidence that our approach is working.”

      Not if your responses aren’t from people asking to have their kids Dx’ed, it isn’t. Fear drives people underground. Asshats.

    • Jennie

      As a mom who likely grew up with undiagnosed ASD, and is raising a beautiful and intelligent 5 year old diagnosed with ASD, I have always taken offense at the cruelty we adopt in treating mental (and even physical) conditions. These “ransom notes” seem to continue perpetuating that fallacy of needing to combat a person who seems atypical, regardless of damage done to them.

      No, it is not that the disorder is holding the person hostage. It is the psychiatric (and other societal) institutions that hold an atypical person hostage when they do not look beyond the negative differences, to see the positive benefits that person can offer to our world.

      So, we think differently. We sense our world differently. Our perspectives are different. And that can be a good thing. It is the rest of the world that seems they can’t handle change to take advantage of our abilities.

      Oddly enough, it is in many of these changes, from lowering teacher-student ratios, creating smaller school settings, being open to the creative and differing viewpoints, offering quiet sanctuaries in the workplace, and respecting all people, that make life for all of us better, not just the weird ones.

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        Lawful this on weekend concluded 300 tattoo artists mostly from Southern California studios gathered in Pomona’s Fairplex to chuck their ink at anecdote of the everybody’s largest conventions of its kind. In putting together to the clever artists, the Body Taste Expo in Pomona also featured plenty of play such as tattoo category contests, live music concerts and MMA fights.

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