Ericka Hart

Words by Tahirah Hairston, Photography by Shaniqwa Jarvis 

In 2014, at the age of 28, Ericka Hart was diagnosed with bilateral breast cancer. When she searched for pictures of women who had undergone double mastectomies, she couldn’t find anyone who resembled her. For the past year, Hart, now 30, has made it her duty to change that, starting with using her body to raise awareness and ultimately help to create Google search results where black women who are diagnosed can see themselves. 

The diagnosis forced Hart, a professional sexuality educator, to look at the prejudices against those with chronic illness, their bodies and their relationships with sex. While undergoing treatment, she found that doctors were prone to educating her about everything except her deteriorating sex drive as a queer woman. So she did her own research and wrote a 40-page curriculum for future breast cancer patients about how various treatments will affect their sex lives. 

From outspoken speeches to nude photoshoots, Hart is disrupting the world’s misinformed idea of what a breast cancer survivor looks like. 

TH: How were you taught sex education and sexuality growing up? 

EH: My mom and my dad were super open to talking about sex and sexuality, but they also had limited knowledge based on them not really getting any sex education either. When I had a class in school, the teacher walked in and said, “We’re going to talk about sex today and what I’m going to tell you is that you need to be abstinent”—and that was the extent of my sex education. I talked a lot as a kid, so I kept asking my teacher, “Why can’t we talk about this, why is this so top secret,” and she didn’t have an answer for me. 

As time went on, my friends started having sex and they would come to me for advice. I would go on my AOL dial-up and try to get answers for them or use my porn education to explain it to them. I was their safe space. 

TH: How was beauty recognised in your household growing up? 

EH: I didn’t come from a household where my parents said, “Erika you’re so beautiful, you’re so pretty.” It was said more like, “Get good grades and that makes you beautiful.” Nobody really talked about people’s bodies. No one was, “You’re fat or you're gaining weight or your belly is big,” none of that. The outside world taught me my thighs were big or my lips were big or my hair was weird. I remember when I was 14 I told my mom I was going to be anorexic and she said, “OK,” and walked away, then I came downstairs for dinner two hours later and I said, “OK, what’s for dinner?” and she was like, “I thought you were going to be anorexic?” [laughs] She was like, “Look, you’re never going to be skinny, you’re always going to have hips, you’re always going to have thighs, you’re always probably going to have a little bit of a belly, so, just embrace it.” That was my body image conversation, I had nothing else beyond that. I just had an example of a person who really embraced their body without ever saying anything about it. It wasn’t that she needed to say some sort of affirmation, she just existed. 

TH: What was your experience as you moved on to high school? 

EH: I did this whole thing in high school where I told everybody that I was going to lose my virginity at prom. I went to a small high school in Puerto Rico, and Puerto Rico is relatively conservative when it comes to talking about sex, as it’s a predominantly Catholic island. Everybody was like, “This American girl is so crazy”, but it really opened up this very secretive act. It taught me that sex does not have to be this secret thing that we don’t talk about. 

TH: You’ve had the experience of being taught about sex and sexuality and then making it your job to make sure students are informed. What do you find to be the biggest misconception? 

EH: Some people don’t understand that sex education is also about gender, body language and healthy relationships. It’s beyond the act of penis to vagina or oral or anal sex; it’s all the things that inform or don’t inform those actions, body politics and anatomy. People have lots of misconceptions around sexual identity versus action, so if someone is a cisgender girl and she’s experimenting with another cisgender girl, there’s always the question of “Am I a lesbian because I’m participating in this act?” That act and that identity are separate. Gender identity and sex assignment at birth and the way that people understand gender is very old and rooted in oppressive systems and colonisation. We still say things like “it’s a girl and she needs to wear pink”, or people have gender reveal parties. That’s all so weird. 

TH: How did your views of sex education change after you were diagnosed with cancer? 

EH: I’ve always talked about bodies and how they are different. I’ve always talked about an awareness of bodies that don’t necessarily fall inside the politics of desirability. So much of what I'm doing now is no different from what I was doing before, there’s just more of a platform. 

Before going topless at AfroPunk, I was in the midst of writing a curriculum for breast cancer patients who experience sex in new ways with their bodies. The curriculum is called Sexualizing Cancer and it’s bringing awareness to the medical industry conversation around disability and how we view disability like it’s morbid and a problem and not something that can be sexy and is a part of life. It’s challenging people and their concessions about disabilities and chronic illness. 

TH: How did breast cancer affect your sex life? 

EH: I loved all of my doctors, but none of them talked to me about how my sex life would change. No one was really like, “Ericka, this is what’s going to happen to you.” They said I would get mouth sores, they said I would feel fatigue, but nothing really beyond that. 

I started putting two and two together, I didn’t really have people to turn to with regards to talking about it. My body was put in menopause because I wanted to preserve my ovaries, so I started reading about menopause and fatigue and how they impact your sex life. When folks are in menopause they experience decreased libido and I also had fatigue from the chemo, so I was too tired to have sex and I didn’t know that all of those things were the reason it was happening. I just thought something was wrong with me. I didn’t understand why I didn’t want to have sex with my partner. 

It’s also like a diagnosis and how you think about your body. I’m indoctrinated with all the morbidity that’s perpetuated about breast cancer as well, and separate from that I can decipher in my head what makes a difference and what doesn’t for the most part. But I think that those thoughts impacted my partner, for sure, like “I miss her breasts” or “What is going to happen to her?” That will impact the sex life too. 

TH: Your mom was also a survivor and died when you were in high school. How did she shape your idea of what a woman with breast cancer looked like? 

EH: It showed me that breast cancer wasn’t this morbid trajectory or sad experience. When my mom had a nipplectomy, she left the hospital two days later and she was in her room dancing around topless because she was so happy to be out of the hospital. There wasn’t this sad “I don’t have a nipple, I’m not a real woman any more,” she just was happy to be out of the hospital. 

Most people when they would talk about my mom and I would tell them she had cancer, they would be like, “no, she doesn’t”, because what was perpetuated in the media was this frail, sad person and my mom was never that. It didn’t matter how much chemo and steroids she was on, her body pretty much stayed the same. She never left the house bald, she always had a wig on. I think that’s very particular of black women, being super-conscious in how their hair is and never really looking like anything is going on because they always look fly, and that was my mom. Chronic illness doesn’t look a particular way and she was the epitome of that. 

TH: Many black women aren’t informed about the possibilities of breast cancer and the fact that they are more likely to be diagnosed at an earlier age than white women. Why do you think that is? 

EH: There’s systemic racism in this country. If I Google double mastectomy, what comes up are Angelina Jolie and some other white woman who is like the Susan G Komen of Europe. That’s problematic when white women are diagnosed more, but black women die faster because they go to the doctor when their cancer is at stage four versus when they could have had it removed pre-emptively. 

But if advertisements are not targeted to them, then why the fuck would they go? The medical industry has not done a substantial amount of work to apologise and be accountable and be responsible for the pain and the harm caused to communities of colour, or to make them feel comfortable. 

TH: You went topless at AfroPunk and that catapulted your platform of creating awareness and visibility for black women. But how did you get to that point? 

EH: When I started to see that breast cancer adverts weren’t geared towards black women and I started reading about the cancer rates for black women and that there weren’t a lot of queer black people getting checked, I was just like, “you know where there’s a lot 

of queer black people?” AfroPunk. I had gone every year. I was like, I want to go topless because I want to raise awareness. I wanted people to see me and check their boobs, and then it became so much more. 

TH: You gave a really powerful speech against the Women’s March, asking, “Who is this for?” and standing up for the women you felt weren’t represented. How did your involvement come about? 

EH: I had been very vocal about the women’s march on my Facebook, and vocal about it as in against it, so when I was asked to do the speech I was like, “Are ya’ll sure? Um OK.” I just took the opportunity to call out the action. The march was just talking about pussies and vagina’s and having a pussy doesn’t mean that you are a woman. The pussy hats (knitted hats worn by protestors) are all pink—whose pussy looks like that? I’ve seen a lot of pussies in my life and a lot of them were attached to a black woman or a person of colour and they were not pink. I mustered up all my energy to go down there. I was like, “I’m going to be booed off stage,” because there were lots of other speakers that weren’t saying those things they were like, “Yay ladies, we’ve got to stand up,” and I was like, “Oh god, they’re going to hate me.” But, it turned out fine. 

TH: Do you think you changed people’s minds or opened their perception? 

EH: My measurement of reaching people would be that they did something themselves. People were coming up to me afterwards crying and they were moved by what I said, which I think is great, but I just want folks to get into action about those things. People showed the speech in their classrooms and it went viral and I think that makes a difference, but I don’t really know—what are you going to do outside of showing me that you shared it? If I’m not in the room, how are you showing up for black women? 

TH: What is keeping you hopeful and happy right now? 

EH: My partner and I just moved in with each other and neither of us had any furniture really, so we’re creating a home and just really being totally into each other and loving on each other. They hold me down and I hold them down. It feels like my first relationship, honestly, the first time I’ve ever been in love. That’s certainly something that keeps me going. Also, teaching. Sex ed for elementary school students, even if all they do is scream when I say the word vulva, it’s fine.

This interview first appeared in Riposte issue #8.