Katie Johnson, 9, whose picture has been used in a hoax on Facebook.

Katie Johnson, 9, whose picture has been used in a hoax on Facebook. Photo: Terri Johnson

Have you ever clicked 'like' on a picture of a sick or disabled child on Facebook? Sometimes there's a caption that reads "for every like, Facebook will donate money to save this child", or "please like this photo to show this child that they're beautiful." These Facebook photo memes tug at heart strings. But they can actually hurt real people - the photographed children and their families.

Perhaps unsurprisingly, these photos do nothing to raise money for those in need. And while they may raise awareness of disability and illness slightly, they are often exploitative and the comments below the pictures can be vile and inappropriate.

What’s more, consider the fact that most of the photos used in Facebook memes are stolen. They typically feature children in distressing conditions - enlarged heads, hooked up to life support machines or with severe skin conditions. These memes are often used for ‘like farming’ – where owners of the ‘popular’ Facebook pages potentially profit from selling the resulting pages to marketers.

Last year, nine-year-old American girl Katie Johnson, who has Down Syndrome, was the victim of cyber impersonation. Her photo was taken and distributed on a Facebook page without Katie or her parents' permission, and she was renamed as Mallory. 

The photo was captioned: "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".

Katie's mother Terri was first notified about the theft and misuse of Katie's photo by strangers. "Complete strangers recognised 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", Terri says.

The photo of Katie that went viral received over 3.5 million likes, and countless comments. Terri couldn't believe how far Katie's photo had reached, and the comments received. 

"It took a minute to completely absorb what was happening," says Terri. "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 then sell those sites for profit."

Many of the comments below Katie's were derogatory. Admirably, Terri remained composed when she saw the hurtful comments.

"My instinctual reaction was to skim over the negative posts for two reasons," Terri says. "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."

However, in between the hurtful comments, there were loving and supportive ones. Terri and her husband Jeff have been moved by the millions of well-intentioned people who showed their support.

"The positive comments, while tending to get buried among the negative ones, evoked a completely different response," Terri says. "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!"

To give back to those who stood up for her daughter, Terri chose to introduce the real Katie on her blog.

"Katie is the youngest of five children and is loved and adored by her parents, her siblings and all who meet her. While she is shy, she will almost always introduce herself with a hug and a smile.

"She loves Carrie Underwood and can sing the words to every one of her songs. Each morning getting ready for school she tells us which Disney princess she looks like, unless, of course, she looks like Carrie Underwood that day.

"She has an uncanny ability to know when someone in our home is sad. She finds them in minutes and stays with them until they feel better. We are truly blessed to be Katie’s parents and to have her in our home."

Distressingly, Katie’s photo is still being circulated almost six months after her parents were first alerted to the cyber impersonation. Terri and her husband tried to have Katie's photo removed from Facebook, but it's proved futile. 

"We have been met with silence at every turn. There is little protection from the law in regards to cyber impersonation. While we feel passionate about protecting free speech in our country, including on the internet, stealing someone’s identity is theft and falls outside of that definition. We have learned first hand how scary it can be for someone to impersonate a loved one online. We have also learned the frightening power of today’s information age," she wrote on her blog. 

The laws around cyber impersonation are sketchy. The Australian Crime Commission provides little clarification around the cyber impersonation aspect of identify theft. Using her own blog to reclaim the power and share Katie's story in an honest and dignified way, Terri is hoping to educate people about cyber impersonation and also the impacts of clicking on Facebook photo memes.

"I don't want to pull Katie into viral traffic any more than she already has,” writes Terri, “[But] if sharing Katie's story can help protect others from cyber abuse, exploitation and profit than I am willing to do what I can.” 

This article first appeared on Daily Life.