I do not have breast cancer. Sylvie does not have breast cancer. In October, it’s trendy for brands and companies to don pink and ‘raise awareness’ regarding breast cancer. It’s February, and it’s Valentine’s Day. This is not about Breast Cancer Awareness. This is about gender, lingerie, femininity, health, healthcare, age, agency, and breast cancer in the LGBTQ community and more.
In September last year Sylvie and I were in Seattle for a family wedding. We were excited to get to see our dear friend, Emily Jensen, and even ask her if she’d be up for modeling our new underwear. Emily was diagnosed with breast cancer in 2012, at the age of 31, and after a bilateral mastectomy shared photos on Facebook of her life (like we all do) – traveling, going to the beach – breastless and topless. At this time, however, she had just written a pointed post on FB about ‘surviving’ breast cancer and people stealing her topless photos, holding her up as a poster child for breast cancer survival. We didn’t dare bring up the modeling question. But when she asked us if we’d be up for having her take pictures in our underwear, bringing into the breast cancer AND lingerie conversations the topic of gender presentation, normative gender assumptions, age and the experiences of women and LGBTQ people in the healthcare system, we knew it was a perfect fit for Play Out underwear, since it’s a personal concern for us.
Emily is starting an online supportive space and blog for the LGBTQ community and women dealing with breast cancer, FlatTopper Pride, and read her introduction to the project here. In our collaboration, we wanted to connect with other queer people who had breast cancer and chose NOT to have breast reconstruction and to live without wearing prostheses. Emily brought in her friend Jodi Jaecks to tell her story and take pictures with her; I wanted to reach out to someone closer to Sylvie and me on the East Coast, and Emily introduced us to Melanie Testa (who goes by Melly). For this project, Emily, Jodi and Melly all did photoshoots wearing Play Out underwear, and they have all written and shared their stories and their hope for expanding the conversation surrounding breast cancer.
In our collaboration, we decided that I would provide context – some data, percentages, numbers – and an introduction to these three awesome people. I can aggregate the information – and there is so much information, there are so many angles to touch on – but I can’t presume to write from personal experience.
BREAST CANCER STATISTICS
- PROBABILITY: Approximately 1 in 8 women will develop breast cancer in her lifetime; men can get breast cancer too, though this rate is more like 1 in 1,000 (BreastCancer.org)
- RATES: In the U.S., breast cancer rates have been decreasing since 1989; most sources attribute this decline to increased awareness, improvements in treatment, and earlier detection.
- GENDER and AGE: Being a woman and growing older (age) are the most significant risk factors for breast cancer.
- GENETIC FACTORS: BRCA1 and BRCA2 gene mutations are the most common mutations that account for the 5-10% of breast cancers that can be linked to inherited gene mutations.
- AGE part 1: 1 in 26 vs. 1 in 227 – that’s the difference between the probability of the average age of diagnosis, from age 70-80 (1 in 26) versus from age 30-40 (1 in 227) according to SEER Cancer Statistics Review report (Cancer.gov).
- AGE part 2: Breast cancer in younger women is usually more aggressive, sometimes more advanced, and has lower survival rates than that diagnosed in women over 40. There is currently no effective breast-cancer screening tool for these younger individuals.
- BREAST RECONSTRUCTION: According to an article on MedicalDaily.com published in August, 2014, 58% of women choose NOT to have breast reconstruction post-mastectomy. Additionally, of the women polled for this study, one of the significant factors of the women who chose not to reconstruct was their age, over 50.
- PROSTHESES? Hard to find statistics on the number of women who choose NOT to reconstruct and choose NOT to wear prostheses. Why is this not common information? Especially for people looking for support in making this decision to go flat?
It is these last three points that are the most salient for us at Play Out, and for Emily, Jodi, and Melly. All three of these people were diagnosed when they were under 50 years of age. And all three chose NOT to have breast reconstruction. Their reasons differ, and their experiences of course differ. But as Emily said so eloquently, “I believe that cancer of the breasts or reproductive organs in women can actually bring about revolutionary thinking and acts about gender.” Don’t just read the quotes, you can also read her own words “Shirts Off, Underwear On: Thinking Cancer, Gender, and Presentation”.
Sylvie and I have learned a lot from these three strong people, and we have also learned more than we knew before about breast cancer. The statistic – 58% of women choose not to have breast reconstruction post-mastectomy – is not shared very often. The dominant narrative, in my opinion, is always about reconstruction, leading one to believe that reconstruction is the norm. But what are the other options? I think it is fair to say that no one considers these questions until they are faced with this illness and this life/death choice. And when they are presented options from their doctors, nurses, medical establishment – what voice is lost? The voice of the person who chooses not to play by the gender-normative and stereotypical beauty rules. With the extent that the current society is obsessed with youth and beauty, any reminder of illness is something to hide from and obscure – and this isn’t even to mention the experience of queer people or women who are ‘othered’ in their appearance. When this illness means the removal of those outward gender indicators, accepting, loving and feeling empowered in their new body challenges societal assumptions about gender.
Melly was diagnosed at the age of 42 and her experiences make clear that the healthcare system still has a long way to go in supporting women and queer people in their treatment for breast cancer. In the midst of everything that comes with being diagnosed with breast cancer – the treatment options, the survival rates, the questions, the shock, the fear – her choice to have a bilateral mastectomy without reconstruction was constantly questioned. She writes:
I was certainly made to feel as if my choice was abnormal by my doctors when I was asked to see a psychiatrist to make sure I was of sound mind in my ‘contralateral decision making process’. At that same office, my fellow sisters who chose reconstruction were not asked to justify their surgical choice to a psychiatrist, regardless of their contralateral choices. This bias is unacceptable, and clearly illustrates a preference for reconstruction to the shape of a breast and breastedness in general. It also serves to make it difficult for women to choose otherwise.
Instead of being forced to fight these systems and assumptions while simultaneously fighting for their lives (physical/emotional pain/trauma), can we educate society – and the medical community – to listen to the desires of women faced with this illness and this choice, instead of reinforcing the stereotypes and taking away these people’s agency. Her choice was constantly called into question. But why does it matter? The point is that women should be able to know all the options, and to not be constantly questioned, instead of pressured to reconstruct because they cannot find these voices out there, pushing back against the gender norm. Melly talks about normalizing breastless women, and about putting these pictures out there so that someone else may find them, and feel confident in their decision – and in who they are. Read more from Melly on her blog piece, “Shirts Off, Underwear On: Play Out, Breast Cancer, and Gender Expectations”.
In S. Lochlann Jain’s book, Malignant: How Cancer Becomes Us, she asks, “Can women not show their chests in public because they are women, or because they have breasts?” (p. 76). This question is particularly significant for Jodi, who, in 2012, turned to swimming to help her regain her athletic lifestyle and fit body post-chemotherapy and bilateral mastectomy. Without being able to find a swimsuit that comfortably allowed her to swim, she elected to swim topless because – why not? When the Seattle Parks Department said this was not allowed, Jodi knew she needed to fight the decision; you can read many interviews and articles that she did online. Jodi tells you the story in her own words, and expands on her decision to go flat. She talked to me about making sure that everyone is treated fairly and that, in whatever their experiences, we can reduce everything to human-ness. She says, “The more people talk about cancer and see it, they know the spirit is resilient.” You can read Jodi’s own words on FlatTopper Pride as well, in her piece “Swimming Bare-Chested: Breast Cancer, Humanity, and Normalcy”.
There are a lot of pictures of cancer survivors, of post-reconstruction, of mastectomy scars, of the beauty in strength and healing. But where is the conversation around gender? Where is the conversation around the societal pressures these women went through? Instead of just looking at the pictures and saying “how brave, she survived this illness” we ask people to look at the pictures and say, “how brave, this person is challenging society’s expectations.” And winning.
By highlighting these stories, but more importantly – showing you their bodies, queer, different, unashamed, strong – we can show how illness and socially conscious medical care for women can expand the conversation surrounding gender, and that this can be a normal choice and a normal way of being, interacting, and living in this world. Please join us, and continue the conversation, at FlatTopper Pride.
Thanks to everyone for helping make this happen – Emily, Jodi and Melly first of all. Photographer Nomi Ellenson for shooting here in NYC, with help from Bronwyn Karle in styling/hair/makeup and model Rain Dove for behind-the-scenes; and thanks to photographer Candace Doyal out in Seattle.
Remember to go to FlatTopper Pride
And follow Melly’s website and blog
Follow Rain Dove on Facebook, Instagram and Twitter @RainDoveModel
Check out Candace Doyal on her website