The Mastectomy Scars Facebook Might Not Let You See

Why is Facebook enabling censorship of photos depicting breast cancer scars?

I saw my first mastectomy scar in a Facebook photo. The picture showed a pregnant woman with no breasts and an enormous jagged scar rippling across her chest. She looked straight into the camera, held my gaze, and showed me a side I’d never before seen of cancer. 

This photo lives on the main page of The SCAR Project, a website that shares photos of real women living with breast cancer.

Facebook censored the project’s photos, calling them obscene.

I n her introduction to The Cancer Journals, author Audre Lorde writes: “I do not wish my anger and pain and fear about cancer to fossilize into yet another silence, nor to rob me of whatever strength can lie at the core of this experience, openly acknowledged and examined.” When we hide the signs of breast cancer, we fall prey to a world that does not leave room for women and our experiences.

Breast cancer scars and reconstructed breasts are not obscene. They’re necessary. For education. For breast cancer patients and survivors to connect and find community. To redefine a very warped beauty standard and to raise awareness and money for research that will save women’s lives.

Breast cancer scars and reconstructed breasts are not obscene.

In 2013, following the success of a petition sponsored by Scorchy Barrington of The Sarcastic Boob and Ann Marie Otis, founder of Stupid Dumb Breast Cancer, Facebook announced they had changed their community standards. “We agree that undergoing a mastectomy is a life-changing experience and that sharing photos can help raise awareness about breast cancer and support the men and women facing a diagnosis, undergoing treatment, or living with the scars of cancer,” they stated.

A post-mastectomy tattoo by Amy Black (Credit: Amy Black)

Yet despite their public-facing announcement and change in official policy, Facebook has continued to handle the reporting of such photos in a way that fosters censorship and harassment. A new petition — launched by Vonn Jensen, founder of Flattopper Pride, a Facebook group geared toward the specific needs of the queer community, and Sara Bartosiewicz-Hamilton, a SCAR Project model and founder of Flat and Fabulous — outlines the lingering issues with Facebook’s protocol:

“Any photo can be reported anonymously at any time. I have had numerous photographs reported which I was ultimately told by Facebook did NOT violate your community standards. When a photo is reported, I am sent a notification so that I know what photo and on what grounds it was reported (in my case it has always been for ‘nudity’). At that point, I have the option of removing said photo, or allowing your staff to review it and determine whether or not it violates the policy and would therefore be removed. Because I am aware it is within the policy, I choose to have it reviewed by Facebook and I later receive a notice stating the picture has not been removed because it ‘does not violate community standards of decency.’
However, I never know who reported the photo unfairly, and so I cannot stop them from continuing to report photos egregiously. Here’s the more important part: your process seems to have a limit to the number of reports allowed against the profile or page — enough of these false reports and you shut down our accounts! And since reports are always made anonymously, the person doing the reporting (even though it does NOT conflict with the policy!) is free to go on harassing in this way until they accomplish getting our accounts shut down. This must stop! In your efforts to enable those making reports to remain anonymous, you are also enabling others to continuously target and harass people. In effect, you are sanctioning this harassment and bullying.”

According to Bartosiewicz-Hamilton, it’s nothing short of critical that this censorship and harassment stop. “We need these photos out there,” she says. “Women who are considering what to do need to see the reality of what they’re signing up for. We are served by the general public understanding what is happening to our bodies.”

Sara Bartosiewicz-Hamilton (Credit: David Jay)

Jensen says they originally began posting their mastectomy photos as a way to regain control. “People were taking photos of me and sharing them without my permission. I decided if I put them out intentionally, then I can link back to an article to educate people. As opposed to just being inspiration porn for people, which I resent, I can use my photos to get people to think.”

Vonn’s photos are flagged regularly, but so far their account has not been revoked. Banned accounts, though, wreak significant havoc on breast cancer communities and those they support.

Vonn Jensen, post-mastectomy (Credit: Ames Beckerman)

I spoke with Beth Fairchild, another vocal woman in the online breast cancer community, days after her account was banned yet another time. Beth, diagnosed with metastatic cancer, knows her time is limited, and she uses that time to support countless women online through her Facebook page as well as by volunteering for METAvivor to promote awareness and research for metastatic cancer patients.

“People say it’s just Facebook, who cares? But it impacts how I make a living,” Fairchild says. “I run five tattoo studios. I’m also not able to respond to my ‘Women With Cancer Under 40’ group. I can’t give them information or support.” 

The photo that recently lead to Fairchild’s block showed a reconstructed breast with an areola tattoo, clearly marked as a post-mastectomy image. The text on that photo offered free nipple tattoos for breast cancer survivors. While two inches of tattoo may not seem significant, the gift of a nipple makes a profound difference to survivors who want to see their breasts as they did prior to cancer. Beth’s photo, by the way, does not actually violate Facebook’s standards. Says Fairchild:

“I have a terminal disease. I don’t want to spend my precious time arguing for something that is beautiful and compassionate and life-changing, just because someone considers it offensive. I want to spend time with my family and helping women. I don’t have much time left. I don’t want to waste it.”
The banned photo of Beth Fairchild

Why does Facebook enable anonymous strangers as they repeatedly allow for reporting on perfectly acceptable photos? I wish I could answer that, but Facebook refuses to respond. Aside from an overview and a flowchart posted online, Facebook remains mum, and we’re left guessing as to the who, what, and how of the Facebook reporting process.

Whatever the reason, Facebook certainly could do something to change their system and stop suppressing women’s voices. “We’re asking Facebook to build a more robust system, and if someone repeatedly reports people that don’t go against guidelines, that they get in trouble with their account,” Bartosiewicz-Hamilton says.

Make no mistake: This petition, while vitally important in amplifying the voices of women who create community and provide support, is a distraction. Instead of fighting for a voice that we’ve already been promised, we could, instead, put that energy into awareness and research.

This fight belongs to all of us, because even if you or I don’t have breast cancer, there is a one in eight chance of getting it in our lifetimes. Lesbians, bisexual women, and Ashkenazi Jewish women have even higher rates of incidence, and black women higher rates of mortality.

A woman post-mastectomy with skin expanders that prepare the body for an implant. (Credit: Genevieve Fridley Photography)

“A revolution has begun,” Jensen says. “And it’s all because of collaborative women. I didn’t want to write the petition on my own; I wanted to write it with someone else to demonstrate women working together. It’s not just that I have these opinions, but that we’re a community, and we take care of each other.”

“A revolution has begun and it’s all because of collaborative women.”

This fight belongs to me, not because I have cancer, but because my family and friends do. My mother, a breast cancer researcher and survivor, looked through the microscope to see cancerous cells in a biopsy of her own tissue. And then there’s my aunt. My great aunt. Laura and Angela, who just finished another round of chemo and have a rough week ahead. Rochelle, who I met in college and who died last year. Vonn. Sara. AnnMarie. Beth.

It is outrageous, enraging, and inexplicable that Mark Zuckerberg and Facebook, in spite of their pretty words, continue to suppress women’s voices. They don’t return e-mails or open a real dialogue. The only thing they hear are the clicks on the page. As I write this, the new petition has just over 2,000 signatures. That’s not enough. Add your name now. Click so hard and so loudly that Facebook has no choice but to listen.

This flowchart provides our only insight into Facebook’s murky reporting process.

Let this dishonest behemoth look out from behind its computer and say, yes, we will stop enabling censorship and bullying so women can go back to the more important business of healing and finding a cure.

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