20 June 2013

One like = one prayer. How exploitative memes and online slacktivism is hurting real people.



Please don't think that Facebook will donate money or prayers to sick or disabled children. I've seen a number of very distressing photos appear in my feed, with the caption "for every like, Facebook will donate money to save this baby/child". Similarly those photos of sick children with the caption "like if you think s/he is beautiful".

These photos do nothing to raise money for those in need. While they may raise awareness of disability and visible difference slightly, they are exploitative (do these children and their parents know their pictures are being used? I doubt it) and the comments below the pictures are often vile and inappropriate.

So stop liking, stop sharing, and stop exploiting these children whose pictures have been misused.

If you really want to help a sick baby or child, donate some money to a hospital or volunteer at a children's charity. Stop it with the SLACKtivism.

Most of the photos used in Facebook memes are stolen. Cyber impersonation. Photos are distributed of children in distressing conditions - enlarged heads, hooked up to life support machines or with severe skin conditions. Maybe the children are dead? It wouldn't surprise me - I've seen photos of dead animals in my Facebook feed before. These memes are used to drive traffic to company Facebook pages to make a profit.

Late last year, a photo of a baby with Harlequin Ichthyosis was stolen and distributed in a like for a prayer meme on footballer Lucas Moura's fan community Facebook page. This picture was several years old and was not captioned stating the baby's diagnosis was ichthyosis.To date, this photo has received over 1 million likes, over 27,000 comments and more than 4000 shares. Most comments are in disgust - for example "gross", some are sympathetic or wishing the baby prayers, and there are a few strong educative voices - explaining what Ichthyosis is and discouraging people from clicking on these Facebook memes.

DeDe, whose son has Ichthyosis, wrote a heartfelt post to educate the gawkers:

"Friday night I couldn't sleep after seeing a picture of a Harlequin baby being misused for attention on Facebook. Reading the comments made me nauseous especially since there was no information given about the baby as to what it was or how someone could really help. The only words connected to the picture were 1 LIKE = Get well soon. Seriously people? Do you really think that liking the picture is going to help the baby get well? Obviously not, just like all the other FB junk chain pictures saying LIKE if you respect, Ignore if you have no soul blahh blahh. It's disgusting what people will do for attention and I wasn't about to sit there and let all of the ignorant people continue to say horrible things about an innocent baby whose photo was stolen.

My immediate reaction was to comment on that photo to try and educate the commenters and trolls. Incredibly unsuccessful. As I commented with what the diagnosis was and added a FIRST link, I noticed it was useless because at least 30 new comments were coming in at the same time. Many people were commenting that it was baby Brenna and referred people to her site. Fortunately, I knew it wasn't Brenna since I had seen this picture when Evan was born. I fell asleep aggravated as the comments accumulated over 10,000 and the likes were reaching 500,000. There was obviously too many people wrapped up in this viral photo and impossible to educate them when thousands of comments were being posted as the minutes passed."

She also included a picture of her son Evan, as an antithesis to the One like = one prayer meme. If this went viral, at least there's some educative text with the pictures.

Confetti Skin also wrote an open letter to the Facebook page, providing some brief facts about Ichthyosis, and later, a post targeted at those who had liked the photo, with more in depth information about Ichthyosis, plus information about where people can donate of they are honestly interested in doing so.

These Facebook photo memes become viral and people gawk. They are used for voyeurism. The truth about a medical condition is lost as the ignorant and cruel publish assumptions and hateful comments - never to be educated about the disability or illness. Money is never raised or donated to the cause. They're exploitative.

Facecrooks, a site highlighting Facebook scams, says

"Facebook will NOT donate money to any cause based on the number of likes or shares that a photo receives. Several photos of injured or sick children and animals are circulating on Facebook claiming that Facebook will donate a certain amount of money for each like or share the photo receives.

Please do not share these photos with your friends. So many people have the mentality of, “What if it’s real.” Although they have good intentions, they probably don’t realize that spreading these photos can be painful to the parents and families of the children exploited by these hoaxes. Many of the children have passed, and imagine how devastating it would be for the parent to see the likeness of their child being misused in this way...

Please report any photo that you see like this to Facebook. If they receive enough complaints, then they will eventually take action. Do not comment on or share the photo with your friends, as this helps keep the hoax spreading." (Source)

Last year I came across Katie Johnson's story. Nine year old Katie has Downs Syndrome and was the victim of cyber impersonation. Her photo was taken and distributed without Katie or her parents' permission, and she was renamed as 'Mallory'. The photo was aimed at getting millions of Facebook 'likes'.



That was the photo used, with the caption: "This is my sister Mallory. She has Down syndrome and doesn't think she's beautiful. Please like this photo so I can show her later that she truly is beautiful".

I contacted Katie's mum Terri, who writes a healthy living blog. She was kind enough to answer some questions for me.

I wanted to pitch a story for publication at the time I contacted her, but unfortunately time got away from me and I filed the interview away. And then I saw the humourous picture of the doctor above and wanted to share Katie and Terri's real story with you here.

How did you discover Katie's photo was being used?

"Complete strangers recognized what was happening to exploit Katie and tried to track down the original site where Katie's picture was stolen. They found my contact information and emailed me to apprise me of the situation."

How did you feel,when you saw it and the comments below it?

"It took a minute to completely absorb what was happening. Of course your first response is the mother bear response. The claws come out and you start thinking of ways to defend your daughter and attack back those who would take advantage of her. I was confused at the motivation. Clearly "likes" could not be the only motivation? Since then, it has come to my attention that people "farm" likes through sympathy or fear and than sell those sites for profit.

As far as the comment stream, of course I had two reactions. My instinctual reaction was to skim over the negative posts for two reasons. The first being that I didn't want those horrible things in my head in regards to my daughter and second because I didn't want to be angry. When you let your emotions control your reactions, you don't always make the best decisions for those involved. The positive comments, however, evoked a completely different response. The sheer number of people trying to support our daughter in regards to her self esteem (however misguided), but also defend her against the negative comments being made, restored my faith in humanity. We are talking numbers in the MILLIONS! Incredible!"

How can we educate people not to misuse photos of children and adults with disabilities online?

"I've really struggled with this issue because I don't want to pull Katie into viral traffic any more than she already has, and yet my eyes have been opened and my ignorance stripped. I can't just pretend it isn't happening. If sharing Katie's story can help protect others from cyber abuse, exploitation and profit than I am willing to do what I can. Educating ourselves and sharing that knowledge with others, on social networking sites, with our friends and families, etc. is the best way that I know of in today's cyber world.

I also believe that our attitude makes a big difference when sharing these stories. We need to remain positive, respectful and approachable so we don't alienate those we are trying to enlighten."

Does Katie know her photo was used? What are her thoughts?

"Katie does not know her photo was used and would not grasp the concept even if she did. We are grateful that she remains innocent in this horrible incident and yet realize that many other children, those with special needs and without may not be so lucky. That is why we need to get involved and educate ourselves so we can protect them."

You can read more about Katie on Terri's blog.

Please - I urge you not to like, comment on or share those One like = one prayer (or similar) Facebook memes, no matter how well intentioned you are. They will tug at peoples' heart strings, and they will, sadly, disgust people. But your slacktivism through clicks will do nothing to help their cause. Spreading the photos further only hurts the pictured children and their families more. It raises little awareness of disabilities and medical conditions, and raises no money. None. Do something tangible to help children in similar situations. Do something more than just liking a picture on Facebook. The Internet can be used to do so much good.


Terri Johnson has provided some advice for acting against cyber impersonation crime in America on her blog:

"If you would like to explore what you can do to protect against the exploitation and impersonation of children online we have found a great website where you can find out what laws exist in your state and how to contact your representatives to express the need to pass legislation in your area."

I did a search for cyber impersonation laws in Australia, and I think due to the relatively new phenomenon of the Internet, our laws are yet to catch up. The Australian Crime Commission may be of some use.


Have you ever experienced cyber impersonation?

Do you click on those Facebook memes? Have you ever donated to a legitimate cause as a result of seeing a Facebook meme?



  1. Carly
    Thank you for such an intelligent and wellresearched post.

    SSG xxx

  2. Carly, awesome post.

    I would add that if the picture is hosted by a site that is governed by US law and YOU are the owner of the picture in question, a "DMCA takedown notice" may be the easiest way to get the picture off the 'net.

    If, for instance, you took the original photograph and you have not licensed it or otherwise permitted it to be posted by the "bad guy", it's very likely that you'd be able to swear out the DMCA takedown notice.

    (This answer is not a substitute for professional legal advice and does not create an attorney-client relationship, nor is it a solicitation to offer legal advice.)

    And thanks for the shout-out to Confetti Skin. In the whole brouhaha about the harlequin ichthyosis picture going viral, I think some of the best writing I wound up doing was, "A conversation with my 10-year old about harlequin ichthyosis" : http://confettiskin.com/wp/2013/01/03/a-conversation-with-my-10-year-old-about-harlequin-ichthyosis/

  3. You know those photos are used to gain likes/followers then those accounts are sold to companies for big bucks to promote their business.
    That's why they are published.

    It's pathetic marketing but it's the reason behind it.


    1. This is exactly what i came here to say. it's a scam because people then on-sell these pages and make so much money off them.
      I think the more people know this then the less likely they will be to go around liking this stupid pages.

  4. Carly, your ideas and ability to express them are amazing. Mr 14 is foolish enough to leave his FB logged in so I sometimes surf through to see wassup. And there are many, many of these! He typically does not respond but I will use this opportunity to educate him too. Cheers!

  5. I've not come across this particular meme -- I first heard of ichthyosis, I think, through you (when Rellacafa was more active blogging a few years ago) -- and the nearest thing I've come to seeing it is posts asking me to report FB pages which mock disabled people (or are otherwise offensive, e.g. Islamophobic or racist). The memes which I come across a bit more are the scary chain letters which tell of some sicko with an elaborate ploy to kidnap women, and when you tell them it's a hoax, they don't believe you (when I tried telling some women who'd put one of these up in a hospital department that it wasn't real, they suggested I might be the man in the story) or tell you that even if it is a hoax, then warning people could still save lives, rather than just scare people. The truth is it's probably some sick guy's fantasy.

  6. This phenomenon is really unfortunate because it distracts from the good and potential good that social media and online activism can do in helping others. People get jaded when they see stupid Facebook posts asking them to like a photo so a girl can get heart surgery and then ignore real charity requests because of that. I think that in trying economic times charities do need to use all of the tools at their disposal and the number of companies listed at BuyFacebookFansReviews is proof of how vital social media is to the success of all businesses. With governments effectively growing broke (there's only so much blood you can squeeze from a stone) charities and voluntarism is much more important to the well-being of people going forward so it's vital that charities don't neglect having a social media strategy just because some people misuse it.

  7. Thanks, we all need to know about this. There are slimeballs in the world, taking advantage of caring or vulnerable people.

  8. Thank you very much for this useful article. I like it.


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