On October 20, the nonprofit organization The Breasties, which offers support to those with breast and reproductive cancers, planned to host an Instagram Live with Simran Malhotra, MD, and a community member to discuss navigating diagnosis and surgery. But a few hours before the event, the nonprofit posted a cancellation notice on their Instagram page. "Throughout the past few weeks, our account has been flagged by @Instagram for posting 'sexual content,'" the caption read.
The so-called sexual content was, in fact, mastectomy photos. While Instagram's community guidelines often censor the female nipple (something that's been at the center of controversy for years), the platform makes an exception for mastectomy and breastfeeding photos. "We understand that undergoing a mastectomy is a life-changing experience. Sharing photos can help raise awareness about breast cancer and support the women and men facing a diagnosis, undergoing treatment, or living with the scars of cancer. The vast majority of these kinds of photos are following our policies," the guidelines state.
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And yet mastectomy photos on The Breasties' account had been getting flagged as explicit. The account had been blocked from using Instagram Live, and was even threatened with deletion.
"The content we put out is meant to educate, to empower, to create community," Paige More, co-founder of The Breasties, tells Refinery29. "We just don’t understand why Instagram — during Breast Cancer Awareness Month — is over-policing our bodies and sexualizing our breasts."
When Refinery29 asked Instagram to comment, Liza Crenshaw from the platform's communications team provided this statement via email: "We have reinstated these images and apologize to breast cancer survivors and previvors for any unintentional hurt caused. We've allowed people to post images of mastectomies for many years. This policy hasn't changed, and we are investigating why these images were removed in the first place."
Instagram (and its parent company, Facebook) uses an algorithm to automate some of its enforcement of community standards. "Due to COVID and ensuring safe working conditions, we have had fewer human content reviewers. We've been actively working to address any issues with the algorithm and restore content that was incorrectly removed," Crenshaw told Refinery29 in a separate email.
One in eight women in the United States are expected to develop breast cancer in their lifetime. For previvors, individuals who have a predisposition to cancer but who haven't yet had the disease, and survivors, going through treatment can be an isolating experience, especially during the pandemic.
"A lot of times, you go to the doctor when you’re preparing for surgery or treatment or radiation and you’re not shown real-life photos," Allie Brudner Brumel, co-founder of The Breasties, tells Refinery29. "You’re shown pictures that don’t look like you or don’t represent all people, all skin colors, all body types. Usually, the head is cut off and it’s just the chest or just the part of the body that’s being taken care of." The Breasties uses the real-life mastectomy photos they post to Instagram to offer people a glimpse of what their future could actually look like.
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"My preventative mastectomy was four months ago and I know that I was able to do that by seeing those images online," Brianna Majsiak, co-founder of The Breasties, tells Refinery29. "We know first-hand how important that is."
Community members agree. "This group has been so helpful to me," one recent Instagram comment reads. "As I was preparing for surgery, this group helped me to see what beautiful bodies we can have after a devastating situation. They empower positivity for all of us going through tough situations."
Some followers have expressed their own frustration about the removal of mastectomy images. "Before my surgery I was so desperate to connect with other women who had gone through what I was going through," an Instagram story re-posted by The Breasties' account reads. "@the_breasties helped me with that, and continues to help me. STOP SEXUALIZING OUR TRAUMA. Nothing about these photos is inappropriate."
The founders stress that social media is essential to their ability to connect with previvors and survivors. "Without Instagram, we wouldn’t exist," More says. "That platform is how we were able to find each other and how we were able to create this community." While they're frustrated by the ongoing problem, they're eager to work with Instagram to find a solution.
In a post published yesterday, The Breasties claimed that posts are still being removed. The nonprofit called for community members who have had photos and stories erroneously censored to appeal the removals and flags — that way, a person instead of a bot will review the photo in question. To do this, you can click the "request review" button after Instagram lets you know your content was flagged, TechCrunch reports. The Breasties note that their conversation with Instagram is still ongoing, and they're looking forward to seeing actionable change.
"We get emails and DMs every single day saying how much seeing these images have helped people," Majsiak says. "A lot of people will say, 'I’ve been too intimidated to come to an event or a virtual meet up but seeing this account throughout my chemo and treatment has gotten me through.' For us, that’s when we all realize the true impact of sharing these things on social media."
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