Charlene Beswick says she was outraged when Instagram removed a photo of her and her son.
The 38-year-old U.K.-based supply teacher and blogger of Our Altered Life, posted a photo cuddling with her 12-year-old son Harry, who was born with Goldenhar syndrome.
“Harry is a wonderful boy,” she tells Global News, adding that the syndrome is a broad term for a range of craniofacial and spinal abnormalities. “Harry’s spine is unaffected, but he was at the severe end of the craniofacial aspect and was born with no eye, eye socket, ear, nostril and a short jaw.”
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But on Sunday, when Beswick posted a photo of Harry not wearing his prosthetic eye, social media users reported it, resulting in its removal. “When I checked my account on Tuesday, I had a notification that Instagram had removed the image because it didn’t meet their community guidelines. I was outraged.”
She adds the same thing happened to her in August, but she never received a reply from the company when she reached out. But on Tuesday, Beswick thought it would be best to post her situation on social media.
On Facebook, she explained her story, adding some users felt that photos of her son were too much to look at.
“What do you see when you look at my boy? I see the most beautiful smile, wonderful heart and purest love,” she wrote. “If someone hates to look at my child then I have two things to say a) scroll past and b) you’re an a**hole. I’m beyond disgusted.”
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After her post went viral, the social media company issued a formal apology and told Beswick it was a genuine error.
The company told Huffpost U.K. they restored the image back on the site.
Social media users react
Online, social media users were quick to jump in support of Beswick’s son.
“Everyone is beautiful in their own way. He is handsome and I feel so much love radiating from him such a pure heart,” user Ashley Mabey wrote.
“We also have a 7-year-old niece with Goldenar syndrome and she is the love of our lives. We are very proud of her. She is a fighter. This is a very long process but she is a winner and she knows it,” user Laurinda Campos wrote.
“I see a vibrant, sweet and loving soul. Too bad that the person or persons reporting the photo were unable to see what a charming countenance was being shared with everyone. Their loss, our gain,” user Susan Bellefeuille wrote.
“Shame on people who report this. You get mother of the year award for what you do,” Instagram user sjwilliams37 wrote.
Living with the syndrome
Goldenhan syndrome causes disfigurements of the face and usually affects one side of it, The National Craniofacial Association notes.
“Doctors are uncertain why Goldenhar occurs. However, they do not believe it is the result of anything the mother did while she was pregnant. Environmental factors may play a part and there does seem to be an increased incidence of Goldenhar among the children of Gulf War veterans,” the association adds.
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Some children may develop hearing problems, weakness in moving their face, dental problems and bone issues in the neck. Some may require surgery, while others tend to live somewhat normal lives.
And while Beswick is unsure why someone reported the photo of her son, she assumed it has something to do with how he looks.
“They are of course, entitled to their opinion but they can scroll past or even block me. Reporting is unnecessary and unfair on my son. I hope they have reflected on their action which was clearly aimed at causing upset to me and my family.”
And living with a child with a birth defect can also be hard on a family, especially dealing with uncomfortable questions or looks from other people. Beswick says this is something she often has to write about in her blog.
arti.patel@globalnews.ca