We've heard from several of you about a few #psoriasis hashtags being blocked by Instagram — and, unfortunately, this isn't the first time this has happened. As an organization, we want to publicly ask @Instagram to reassess this ban and clarify the reason for preventing thousands of #psoriasiscommunity members from sharing the ups and downs of their disease. We want to empower people to speak up about their psoriatic disease, not mark their images as "inappropriate" for sharing images of their psoriasis.
The statement was accompanied by a picture of several people with psoriasis and the message “psoriasis is not something to be censored.”
What should and should not be allowed on social media is continuing argument. Many white supremacists and alt-right provocateurs known for launching organized harassment campaigns have found themselves booted from Facebook, Twitter and other platforms, including Milo Yiannopoulous and the Proud Boys. On the other hand Sam Dean of the Los Angeles Times reported that Facebook has continued to allow advertisers to target neo-Nazis and other hate groups. You’re more likely to be knocked from your account for saying #MenAreTrash than hate speech.
Part of the reason the system is so broken is because these massive tech companies rely on user-generated reporting systems to police their content with little human oversight. John Oliver dedicated a segment on his show Last Week Tonight in 2018 to the hands-off approach to moderation that Facebook takes and its potentially dire consequences. That approach is extrapolated across platforms like Twitter and Instagram.
Which means that when a user comes across a picture of psoriasis and finds it disgusting or offensive, their report goes into a giant automated system that takes none of the context of the picture or its meaning into account. Someone’s lived-in condition is equated with pictures of animal cruelty or pornography, and the algorithm learns that #psoriasis is the latest edgelord hashtag used to distribute horrific material.
That contributes to the difficulty of living with a disease so many people already feel embarrassed and shunned for having due to its visible signs on the skin. The National Psoriasis Foundation has an entire section on its website for helping people to fight discrimination related to the condition, and I’m sure that it wasn’t put there on a silly whim. Dr. Joel Gelfand of the University of Pennsylvania in Philadelphia said to Reuters Health in 2018, “My patients tell me that they have been asked not to use a pool, feel embarrassed going to the hair salon or have been fired from jobs that require interaction with the public.”
Living with psoriasis is already a difficult thing without social media dropping the ball. People share their pictures and their stories to destigmatize their conditions and make living with it seem more normal. There is real benefit to allowing something like #psoriasis to exist that trumps other users’ inability to allow such pictures to cross their screens without trying to shut it down because they’ve been conditioned to react with disgust. Instagram and all other social media desperately needs to invest in hands on responses to content challenges that seeks the best path forward rather than letting faceless machines treat all clicks equally. Compassion and intelligent moderation of the online world is required, particularly when living in a country under attack by another exploiting the lack of moderation.