Instagram ‘Guidelines’ in Need of Medical Review

By Jamie Wells, M.D. — Sep 13, 2017
Instagram set off a social media firestorm by removing a photo deemed offensive; it was of a young boy with a congenital syndrome, replete with facial deformities. And, it wasn't the first time this occured.
Credit: Pixaway

Instagram set off a social media firestorm by removing a photo deemed “offensive” of a young boy with a congenital syndrome replete with facial deformities. According to Charlie Beswick— the child’s mother, this was not the first time. 

The most recent photo post (with hashtags) in question for her @ouralteredlife account here:

#ouralteredlife #specialneeds #specialneedschild #specialneedsparent #specialneedsparents #specialneedsjourney #disability #goldenharsyndrome #autism #autismawareness #writing #writersofinstagram #writer #ourstory #mysunshineboy #ilovemyboys #love #mylife #brothers #morealikethandifferent #mummyblogger #blogging #specialneedsblogger #diffability #craniofacial #autismlife #autismfamily

Though the image was ultimately restored, Ms. Beswick reveals that on both occasions when a photo of 12 year-old Harry was taken down it was when he was without his prosthetic eye. Regarding his condition, she told the Mirror  “Goldenhar Syndrome is an umbrella term for craniofacial and spinal abnormalities. His spine is unaffected, his mobility is fine. But he is at the more severe end of the craniofacial cosmetic end so when he was born he had got no eye socket at all, no eye, no ear, no nostril and a short underdeveloped jaw as well. He has had a lot of surgery to create those sockets so I’m proud to show it off.”

Ms. Beswick goes on to discuss the challenges for children like Harry and families like hers, her desire to impact society in a positive way by being a child advocate and her hope that Instagram would support these efforts—not compound them. She expressed her anguish and having “felt quite offended” the platform engaged in associating her child’s face with a so-called “guideline” violation given she has such a large, optimistic and encouraging following.

As she states, “Had they taken 30 seconds to look at the image they would see it was really well received and a high engagement post for them.” 

Which begs the bigger question, had a human reviewed the initial complaint by an instagram user would this have even occurred? Or, is it merely a computer algorithm that responds? Either way, the fact it happened twice to this family is two too many. The potential for recurrence to them or anyone in these and similar circumstances is unacceptable. Beauty abounds in all shapes and sizes. A policy or practice that permits recognition of one standard is an epic failure. 

Do better, Instagram. Spokesperson apologies should be a one off here as zero tolerance for discriminating against those with differences should be your baseline. Happy to help if more extensive training and medical understanding is in order— since, as I see it, Instagram actually violated their own terms of use, see here.


To learn more about this and other rare diseases, review the National Organization for Rare Disorders website here.


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