Something happened recently that really angered me. One of the founders of the #GetYourBellyOut campaign, Sahara (Twitter @Sahara88uk) had recently come out of surgery, and while still recovering she posted a photo of herself on several social media sites, but the photo was flagged on Facebook and she was forced to remove it.
Here is the photo, which I’m proud to display on this blog:
Seeing that photo put a big smile on my face. “Great to be pain free”, she wrote. That’s something I can completely relate to, as it was similar to what I had said immediately out of surgery when I had my ileostomy done. Knowing that Sahara was feeling better gives her more than enough reason to be happy and to share her new appliance and scars to the world – heck, I want to see photos of successes like that! But her photo being flagged wasn’t what tipped me over the edge…
On Aug 9th, the #GetYourBellyOut team had created a gallery on Facebook of 60 photos that were submitted by people with IBD from all over the world – some had scars, some had an ostomy, some showed their ass and others their smile. It was beautiful and uplifting to see so many people not ashamed to show their battle wounds for all to see. The gallery was to be put up for a short time so people could vote on their favorites to be featured in an IBD awareness calendar. Even I entered in order to show my support, but a few hours after they announced the gallery, I got this message when trying to access it:
I knew immediately that their page was suspended by Facebook, and my suspicion was confirmed soon after by the GYBO team. Why? Because the photos were flagged again. The team scrambled to find an alternative and managed to get a new voting system up on another site. The photo gallery was removed from Facebook.
Campaigns like #GetYourBellyOut are empowering to those living with IBD, and they’ve been a platform from which thousands of people have been able to express themselves, but it took only a small number of people (perhaps just one) to have enough power to force Facebook to take action against Sahara and the 59 others who had their photos in that gallery. I see it as an act of discrimination. I’m willing to bet that had she posted a photo of herself in a bikini WITHOUT an ostomy or scars, there would have been no complains, and no flags risen. Had the bare bellies of the other contributors been “perfect”, then I’m sure nobody would have complained. Sure, some of us get lucky and we don’t have our photos reported, but should we even have to worry about that possibility? That seems to be how the internet works these days, and that needs to change.
Showing our scars or an ostomy bag IS telling our story and should never be censored. I can understand that some people may be put off by seeing someone’s “shit bag”, but you know what? Too bad. Deal with it. There are assholes all around us (that wasn’t a sneaky IBD joke!) who aren’t able to handle seeing someone in a wheelchair or with a cast or a PICC line or any other medical device – that’s THEIR problem, not ours. Most of us are alive because of our ostomy and to be told that we can’t share our story is not acceptable. Shame on Facebook, and shame on those who feel threatened by someone elses monumental achievements stemming from their battle with a chronic illness. They have no power here!
Perhaps when an ostomy or major surgery saves their life or the life of a loved one, they won’t sneer in disgust. In the meantime, they need to give others the opportunity to tell their own story through photos or video, and through blogs or articles. They have every right to be proud and to share what they’ve been through.
If you’ve ever posted a photo of your scars that has received a negative response from the general public, don’t take it hard. There are so many people who you inspire simply by your act of courage and openness. Thank you for being brave and for sharing your story!
Feel free to check out Sahara’s blog at: http://sahara88uk.blogspot.co.uk/