"When you see photos, video clips etc with the line about "like = love" "ignore = hate" etc: Please be aware that the person who posted the picture probably has no ownership of the picture. Quite often pictures of people, especially children, with disabilities or visible difference are appropriated by heartless people who use the image to draw attention to their facebook page so they can become '(in)famous'. They do not do this because they are a caring person, they do it because they know that YOU are a caring person and will like something they have shared thus boosting traffic to their facebook page, where sometimes there are links to things you would never choose to be associated with. It is wrong on every level to share photos that are not yours to share. It is wrong to post photos that are not yours to post."
- Rose Quartz, disability activist
I wrote about one like = one prayer slacktivism posts here in 2013. You know the posts.
- "don’t scroll without typing amen."
- "if you woke up this morning and your thankful every day while being bless scroll down and type amen"
- "how many likes can she get?"
- "this baby still cute, scroll if you're heartless"
- "ignore if you're heartless"
- "keep scrolling if you're heartless"
- "Ignore If You Have No Heart"
- One like = one prayer.
In recent months, I've seen increasingly more one like = one prayer type posts on Facebook - featuring children and adults with Ichthyosis, and also people with various disabilities.
(Image description: text of "NEW COMMANDMENT: Thou shalt not post pictures online that say 1 share = one prayer. Jesus hates that crap. God.")(Source)
It's recently happened to Jack, Brenna, Evan and Steph (and many, many more). People are stealing photos and using them on Facebook pages and groups. Hell, I saw one 'prayer group', dedicated to sharing these photos, encouraging mindless scrolling and typing amen. What does this achieve?
These posts don't state or explain a diagnosis or aspects of disabilities (not that strangers need to know), humanise the person featured, nor, as Craig Wallace and Jax Brown told The Age, draw attention to any real issues people with disabilities face (like access and employment).
(Image; accessible toilet that's not so accessible because it contains a sound system. Text; "@CraigWtweets: Wanna share disability pix? Try this of a #CBR disabled loo filled with a hose, cleaning stuff & entire sound system")
I am praying for that toilet. Praying so hard it walks some day. No seriously. Sharing these types of pictures is a great idea.
The one like = one prayer posts show people are gullible. Hundreds prayed for this dog - inflicted with a facial deformity.
(Image: a dog with a "facial deformity". Text: This poor dog was badly burned and disfigured trying to save his family from a house fire." One like = one prayer. One share = ten prayers.)
It was a piece of ham on his face. So laughably gullible. (Read the prayers here.)
"Sometimes, the posts are used as an underhand method of promoting bands, actors, businesses, or other entities. And, a Facebook page that distributes one of these fake ‘amen’ posts can gather a great many new likes in a short time. The Page can then be used to post further scam messages, this time to a much larger audience. Alternatively, the page can be sold to other scammers via the black market."
But the biggest impact is on those who have had their photos stolen. I found out Evan's photo was misused on Disability Day (a friend sent me the link) and was devastated. His photo was published on a page where the owner believed women with tattoos were bad mothers. This beautiful, innocent little boy and his loving mother were ridiculed for a genetic condition. I cried.
(Image: a then three year old Evan, who has harlequin Ichthyosis, smiling and holding a sign saying "IAM happy with my life and hopeful for my future", standing next to Bruli, a chocolate labrador. Text: Give them Hope. Give them a new mother. The horrors of every day life for a child who suffers from FIS extended well beyond how they look or how society views them. These tortured soils lack the proper structure and self esteem which children of pure skinned mothers may provide. This holiday season I want you to consider opening your hearts and homes to a child who has been abused their entire life. Give them hole for a brighter tomorrow. Even if it costs a horrible inky mother her freedoms. Merry Christmas")
The caption on the photo is so misinformed. Commenters wanted to adopt Evan but didn't know if he was contagious or not! And De is a tattoo free mother.
I wrote to Mark Zuckerberg urging him to take action (of course it went unnoticed). Luckily (or not) I had a template to use for the letter - I modified the letter I wrote to Youtube's CEO when Mui and Hunter's photo was misused.
Evans' mum De said:
"When Evan's photo was stolen, I did not even get the "pleasure" of a like for prayers post. Instead his appearance was being mocked and ridiculed claiming he was suffering due to his mother's tattoos. It is almost humorous to think anyone would ever believe such a thing and sickening anyone would follow such a judgmental racist page. But it does happen.
I personally felt attacked. Since they were pointing "blame" on the mother and many of he comments were blaming the mother for his condition- infuriated me. Are people really that fucking stupid?!?"
After countless reports from Facebook users, Evan's photo was not removed. De found a link to a form for parents to report their child's photo. The form is here.
A couple of weeks later, Jack's photo was misused, and his parents had to endure awful abuse, assumptions and prayers from gullible commenters. Again, I was devastated. I've met this gorgeous, joyous little boy and his parents Julie and Danny - they're dedicated to raising money for Ichthyosis research. They don't deserve this.
(Image from Elvis Manuel Cabera's Facebook page: Julie, Jack and Danny Oldacres. Jack has Netherton's Syndrome (Ichthyosis). Text: "like = respect, ignore = heartless, comment Amen.")
Understandably, Julie and Danny were ropable. At the time, Julie described it and the comments as "disability hate crime". She told me:
"When our picture came up on one of these posts I felt angry, upset, helpless and ridiculed! I thought as a parent we are there to protect our children and I felt like this was taken out of my hands. That angered me because I wasn't control of the situation! This must stop - it's such a violation of people!"
The page Jack's photo was featured on was full of kids' photos - all had various disabilities, all calling for prayers. Jack's parents wrote that this was their son, and others said his photo was stolen. Their comments went unnoticed, with hundreds of prayers. Elvis had guilted people into liking and praying.
My message to the page owner and commenters was:
I know this boy and his family. He has ichthyosis - a rare, severe skin condition. This photo has been stolen and used without his parents' permission. All of the other photos on your page have been too. Please remove them.
What you are doing is exploiting vulnerable people with visible differences. An amen or a like won't help them. What will help is if people like you stopped stealing and sharing these photos for traffic. You are scum.
To the people liking and praying for the people in these photos - STOP. Stop being so gullible. Scroll past the photos and ignore. Or report the photos if you really want to do something good for the people in the photos. I bet you would be the type to stare at people who look different in the street.
More information on ichthyosis can be found at http://www.ichthyosis.org.uk - go look it up before typing amen, you mindless pack.
The photo is still there and the page owner has thousands of 'friends'. He continues to post these photos. At the time of writing this, Jack's stolen photo has more than 13,000 likes on it.
When a photo is misused like this, it affects the whole ichthyosis community. It's a terrible representation of those living with the condition, a judgement on their parents and quality of life, and sheer exploitation. After my post was misused on Reddit, I've been active in ensuring I call out these posts, and also letting people know I'm there for them because I'm aware of how damaging these posts and subsequent comments can be to the esteem. I've been vocal on Facebook, asking my friends and followers to report the posts my friends feature in. When the photo has been reported, Facebook replies with a message that the posts have not breached community standards.
So let me get this straight.
Facebook's community moderators would be fine with their photos being stolen and misused.
It's not hate speech because it mentions prayers. So loving.
It's not urgent to be removed because it features children with disability. It implies disabled people are not valued enough.
I can take my top off for a photo and it would be removed straight away.
As the prayer posts keep coming, and I see the subjects of the posts feeling increasingly angry, upset and violated, I wonder how the perpetuators feel:
I wonder what 13000 likes feels like. Does it make you feel like a big man?
Is there a rush when likes and comments come through? Is there a sense of achievement that you are reaching so many?
Do you feel you're doing something good?
How much money are you making from exploiting these people?
I wonder what it feels like to be a sheep, to hide behind religion and type amen, when your slacktivism could be put to good use.
And I wonder how Facebook's employees can condone the theft of these photos (and other abuse and bullying - think of the abuse Clem Ford has copped via private message - it's no wonder she has taken to outing it and the abusers to their employers). Their one-size-fits-all reporting policy is not working. I hope to address this with a Facebook (and Youtube and Reddit) employee someday, to tell them of the human cost of these posts.
To pray for a disabled person is kind, sure. But it doesn't help. It perpetuates the idea that we need saving and are suffering. Many of us lead fulfilling, happy and successful lives. And prayers don't address actual disability issues.
Please, I urge you to stop mindlessly typing amen and do something constructive to help disability. Don't feel guilty because a Facebook user tells you you're heartless for ignoring the posts. Ignore them. And I urge Facebook to review its community standards. It's certainly not an inclusive, compassionate and honest community when people are exploiting disabled kids for likes.
You can read the article in The Age - I was interviewed and so were my awesome disability activist friends.
(Image: The Age newspaper screenshot, Carly Findlay in a blue and pink floral dress (thanks St Frock!), standing under a tree. Not smiling. They said it was too serious an article to smile!)
Edit: I also chatted on the radio about this topic. Listen here.