This week Instagram began removing and blocking post-mastectomy images on its platform and locking accounts that often share this content. The censorship, during breast cancer awareness month, no less, enraged breast cancer advocates and organizations.
I was among them. I am a cofounder of The Breasties, a nonprofit organization that provides free retreats, events, and a resourceful online community for those affected by breast and reproductive cancers. Four months ago, I had a preventive bilateral mastectomy to reduce my risk of developing hereditary breast cancer. It wasn’t a decision I made lightly.
I lost my mother to breast cancer at a young age, and I’ve spent years going back and forth between screening, genetic testing, and biopsies. Last year, I finally decided that a preventive mastectomy was preferable to a lifetime of fear. Fortunately, I had a supportive community to see me through. I found them all on Instagram.
Three years ago, I found Paige More (@paige_previvor) online. Paige, who carries a BRCA1 gene mutation that raises the risk for breast cancer, unintentionally started a movement when she shared real and raw images of her body on her Instagram account after she underwent a preventive mastectomy.
She did it because she had tried to find images of what her body would like after surgery and came up empty-handed. Her images caught the eye of Allie Brumel. Allie was diagnosed with triple negative breast cancer one month after her wedding at the age of 28 and struggled to find any images of young women impacted by cancer.
Our fourth cofounder, Leslie Almiron, was diagnosed with stage 4 breast cancer at the age of 23 and also found comfort in Paige's story and pictures. When the four of us met (through Instagram) we knew we had to create a space for other women going through this.
In February of 2018, we created The Breasties and started sharing as many community stories and images as we could through our account @the_breasties. Our Instagram page is how we connect directly with the hundreds of women who attend our monthly retreats and the annual Camp Breastie. We have chapters in more than 46 cities, and each of them has its own Instagram account. We rely on social media to help as many people as possible in our situation know that they are not alone — and we know firsthand how impactful that is.
Community Breast Cancer Account Blocked for Sexual Activity
Over the past few weeks, our Instagram page has been regularly flagged for sharing community members’ mastectomy photos. Instagram has warned us that these images violate their community guidelines for “nudity or sexual activity.” As upsetting as these alerts were, we ignored them and knew they had to be a mistake because their guidelines clearly state that mastectomy photos are allowed.
Since the start of the pandemic, we’ve ramped up our virtual support through regular Zoom meetups, created a @virtual_breasties chapter, and have hosted various social media events, such as Instagram Live events, because we had to pause all in-person gatherings.
This week, we had an important Instagram Live planned between community members to discuss resources and support for those newly diagnosed or having surgery during the ongoing pandemic — a subgroup of the community that feels more alone now than ever.
To our surprise, when we tried to go live, we received a notification that our account is currently locked due to our “inappropriate” posts and images being shared. Not only were we being censored from sharing these images, but our resources and community support were being cut off.
Instagram’s Stance on Mastectomy Photos
Instagram’s guidelines state that they do allow users to post mastectomy photos and that they understand how sharing these “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.”
From what we’ve seen on our account and heard from other organizations and advocates, this rule has not been upheld by Instagram’s algorithm. And the algorithm that flags inappropriate content has appeared to ramp up during the past few weeks.
Organizations and advocates that have recently been posting mastectomy photos have been told their content is “sexually inappropriate,” and in the case of routine offenses (like ours), Instagram has threatened to block accounts or delete them.
An Upset Community Responds
When we shared what was happening to our account, we were amazed by the hundreds of comments and images shared in response, and the power of the community coming together.
The breast surgeon @dr_amakamd wrote, “[I]nfuriating. @instagram something needs to be done about this! It’s completely unacceptable and just think about the message you’re sending … Your actions are hurting the very people this platform helps the most!”
@kaylee_den commented, "Your sexualization of female bodies stopped an Instagram Live from happening and allowing cancer patients to learn from each other!"
@Sdotmartin05 replied, “@instagram do better. as a breast cancer survivor [who] had a mastectomy, your action and views are so antiquated. Mastectomy as sexual content?! … if only us with the scars viewed it this way. It’s 2020, grow up."
@flattieventures wrote, “[I]f we could censor cancer — WE WOULD. If we could choose to keep our breasts, our nipples, our ovaries, our privacy, our lives — WE WOULD. When you censor our scars, you’re sexualizing cancer and diminishing our struggles. Shame on you and your outdated policies."
@Jessicaramoswellness replied, “I’m so over them deleting our posts!!! They are deleting my posts too."
And one of my favorites, from @olivesgrape, “[M]islabeling this content has the potential to harm more people’s well-being than a nipple shown to the public ever would.”
And the posts using the hashtag #uncensorourbodies have been incredible to see.
Why Photos of Those Affected by Cancer Are Necessary Online
When my mom was diagnosed with inflammatory breast cancer 20 years ago, she had no support group or community to turn to. Social media didn’t exist, and a stigma around talking about cancer was commonplace.
Because of images that I’ve shared of myself before and after surgery, I’ve connected with and met some of the most incredible people in all corners of the country and at all stages of their cancer or high-risk journeys.
When I had leftover recovery products, I was able to instantly find a breast cancer patient at a local hospital who could use them for after her chemotherapy treatment. Several months out, I still talk to the people I’ve met through Instagram daily. When my friend Sydney Heersink passed away from stage 4 endometrial cancer, she was surrounded in her hospital room by Breasties she met online.
In our work with the Breasties, we know our nonprofit would not exist without social media platforms like Instagram. Facebook (Instagram’s parent company) even sent a video and sound crew on our North Carolina retreat last fall to feature our community for meeting on their platforms.
We receive daily messages from people of all ages, stages, diagnoses, and backgrounds who share how much seeing images of people like them has helped them make life-saving decisions, meet someone who truly gets it, get through their diagnosis, cope with the “after,” and so much more.
What happens when these photos are censored and blocked?
We regress back to the world my mom lived in, where her cancer was caught too late, where she didn’t know the importance of self-breast exams, and where feelings of shame are associated with talking about cancer.
Mastectomy photos have helped countless people affected by cancer feel less alone. They have helped me feel less alone. We need these safe spaces, and taking them away will cause harm.
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