Such intimate knowledge of the ravages of cancer might leave a newly diagnosed person hopeless. But Ms. Hart, now 30 has been emboldened to recast the narrative of who a breast cancer survivor is and what she can be.

Images have been a crucial amplifier of her work. A topless photo of her taken at this year's Afropunk music festival went viral. But she is more than a meme and more than a body.

She doesn't want your sympathy, just your attention.

We caught up with Ms. Hart to discuss the ableist notions thrust upon cancer survivors and the work she's doing to shift the conversation.




FH: So most of us first became familiar with you after seeing photographs of you topless, at Afropunk. Can you talk a little bit about what inspired that decision?

Ericka Hart:  When I was diagnosed in May 2014, I started noticing peoples' responses to me were very, like, "Oh, Ericka, I'm so sorry," "Wow, this is so awful," "I'm really sorry to hear that." Just lots of sympathy and concern for my well being. I didn't think anything of that, but I always felt worse coming away from those conversations--Feeling like, okay, this is something that's happening to me and you just gave me some sympathy, but it feels like there's something wrong with me or if I didn't have cancer then I would be better, like that would have been a better existence.

I started having thoughts about my body and that my body had failed me, kind of like a "woe is me." or "why is this happening to me?" Then I started doing work and a little bit of studying about chronic illness and disability and started thinking. This is a very ableist way of looking at chronic illness.

FH: Sympathy is ableist.

Ericka Hart: Sympathy is ableist because it's automatic sympathy. All I have said out of my mouth is that I was diagnosed with breast cancer and you have automatically put that into a bad space, a morbid space.

FH: That's interesting. Okay.

Ericka Hart: Yeah, because I'm not necessarily in that space. I'm just telling you because you should know, because I love you, you know? Your reaction is not responsible. That was one reason why I went topless. Look at me. This is what my body looks like. I have scars for nipples now, and it's not a sympathy story. It's not a morbid story. This is my life. There's many introspections of my life and I like to go to Afropunk. It's hot and I want to take my shirt off.

When I had my double mastectomy I asked my plastic surgeon, I said, "You know, I'm really visual. I would like to see what this is going to look like." What I've seen when I Google double mastectomy, is white people and various images of Angelina Jolie, who's not even topless. I said, "Do you have any examples of Black people that have had double mastectomies?" It took her a little over two weeks to find one image.

Hart at Afropunk Brooklyn 2016 - Credit: Sammy Sampson

FH: Was coming to this viewpoint that having cancer is not a tragedy. Was that automatic for you or was there a journey to getting to that point?

Ericka Hart: There's certainly a journey. My mom passed away from breast cancer when I was 13. My mom's experience with breast cancer, from what I observed, was never in this lane of tragedy. My mom went out on dates. She partied. She was goofy with my brother and I. She worked full time, went to treatment, and made her chemo nurses laugh. Yes, she had days where she was bad, but it wasn't this like, "Woe is me. This sucks. I hate my life. Not at all."

What my mom got down about some times was that her relationship with her mom was awful.  I mean she was a Black femme, so she was always taking care of people and felt like people never really took care of her. It didn't have much to do with breast cancer. It's about the intersections. Yes, cancer is a thing that I deal with, but I've been living my life on the planet as a Black person, so I've had other things in my life that have been like an adversity, if you will.

I definitely think it's completely in line with the whole Black Girl Magic thing--the idea that Black women, Black femmes, are super resilient. We will power through a lot of things before sitting down, resting and crying.

There's no space for this. Someone else needs to be taken care of or held. I also started to do that. From 2014 until the end of 2015, I didn't go to therapy at all. I barely cried through this entire experience.

I felt like, "I'm powering through this because this is what I just do. This is what I've inherited. We just power through our trauma." I was not dealing with this at all.

So going topless at Afropunk was an opportunity for me to heal, like, "Hey, I want you to see me." Because on any other day, you think it's just an invisible disability for me. Because people have in their head what cancer looks like, and it doesn't look like me for most people. I wanted people to see this. It looks like me.

FH: At what point did you decide that you needed to go to therapy to work through it?

Ericka Hart: After December 11th, 2015, the day after my 30th birthday. I felt like I had woken up out of a coma. I was like, "What just happened?" Everything was so urgent. We were just running on "this needs to happen now." You've got to have your surgery now. Then you're going to heal. Then you're going to start chemotherapy, and you're going to be fatigued and tired. You're going to have your chemotherapy appointments. It was all structured and laid out, and then when it was gone. I was like, "Wait. What? What in the hell?"

There was never a time to just sit and reflect. I was scared to do that. I was scared to just sit and reflect. I felt like I don't have any time to do any of that. I need to just go, get this handled and keep it moving.

FH: You were scared because you thought that the reflection would prevent you from moving forward?

Ericka Hart: Yeah. I felt like the opportunity to fall apart was not there and that is present in a lot of spaces in my life. It's not just with breast cancer. I will power through a lot of my trauma, so with breast cancer I realized you have to give yourself permission to fall apart. No one else is going to do that. You know, like Audre Lorde says, like, "Self care is not self indulgent, it's political warfare."

It really is because I don't always have the opportunity to do that. I worked full time while I was on my treatments. I never stopped. Most of the people that I know that had breast cancer or was experiencing it around the time I was, like, my support system, are white. A lot of them would say, "Yeah, I'm taking 6 months off after my double mastectomy. I went back to work 2 weeks after my double mastectomy."

FH: Wow.

Ericka Hart: Yeah, I was like, "I can't be out of work for 6 months." Someone that takes that time, first of all, they have the privilege to take that time, and then it's like, they're actually taking care of themselves. I was okay to go back, but did I even process that, you know, I had a double mastectomy? Uh-uh. No.

FH: I want to talk a little bit about beauty.

Ericka Hart: What is beauty?

FH: Yeah, so I think that one of the reasons why there was so much reaction about those images is because we have certain ideas about what is beautiful and what a presentable body looks like and what a body somebody should be proud of looks like. Seeing those images pushes back against that. I'm wondering if that factored into, at all, your decision to go topless? What are your thoughts about contending with the beauty ideals and beauty standards?

Ericka Hart: Such a good question. The first thing that comes to mind when you say that is that I do benefit from pretty privilege. I know that my body doesn't necessarily fit into this beauty ideal, but my face does. My body is not so far outside of the norm or outside of this beauty ideal. I'm really cognizant of that because I'm like, well, if I didn't look like this would there be this much attention to that? Would that many people want to of taking pictures of me at Afropunk?

I'm super clear that those things that are there and this is something to be responsible for. I also think it's interesting, the idea of beauty, and how often it's like, oh, she's a breast cancer survivor and she's beautiful. Why does that always follow? We are so committed to image. It's like we can't even focus. It's like, "thank God she's still beautiful!" Who cares? I'm here.

It's really interesting to me. I try not to subscribe to it, but, like capitalism, I live in it, so I just have to, you know, work within it.

FH: As you're looking at images of double mastectomies and not seeing representation of black women, why would it be important for you to see that kind of representation?

Ericka Hart: I'm really tired of not seeing myself. It really sucks, honestly, that I have to fight to see myself inside of an illness that kills people. It's not terminal until it's terminal, but cancer is no joke. Black people don't go to doctors oftentimes because of historical trauma, so no one's dealing with that by putting this image of Angelina Jolie as the face of breast cancer or by putting this white cis-hetero person as the face of breast cancer when Black people are not going because our systems haven't served us. We die at faster rates because by the time we go to the doctor it's already in its late stages, because we're just not represented.

FH: Right.

Ericka Hart: I want to see myself. That doesn't make any sense. Black people have been reaching out to me throughout this experience. People of color like, "Thank you so much for showing yourself because I just haven't seen any images of this." That is asinine. That shouldn't be happening at all.

FH: I believe that Black women also get more aggressive forms of breast cancer.

Ericka Hart: Yeah, triple negative. I have triple negative. It's the same cancer diagnosis as Robin Roberts. They don't know why.

FH: I know that you've gotten a lot of attention since those first images circulated. You went viral, and I've seen you in other photo shoots. I'm wondering, how does that attention make you feel?

Ericka Hart: It makes me feel seen. It makes me feel heard.  I really appreciate, I haven't really had to push this that all of my intersections be acknowledged and not hidden. At the other side of it, it's exhausting. It's emotionally exhausting to tell my story. I feel like I'm always exposed, or just like very visible, but not in the sense of you've seen me and you see who I am.



FH: You're tokenized? Objectified?

Ericka Hart: Totally, totally. Thank you. That's the word I want to say. Absolutely. I've had this before, like I've always been the person, the only. Right? Like the only Black girl. The only queer Black girl. The only Black girl with breast cancer or the only breast cancer patient in the space or you know, so it's not unfamiliar by any means.

FH: Moving forward what does your advocacy look like?

Ericka Hart: I'm a sexuality educator, so a lot of my work is having folks understand sex acts and sexuality and find ways that work for them to reclaim it. I also do a lot of work in gender and social justice, so having conversations that dismantle binaries and really center those who are most marginalized. That's what a lot of my work is period. Even in this, I've kept it really clear that this is an opportunity or going topless at Afropunk was an opportunity for me to reclaim my sexuality.

I always joke that I was topless at Afropunk but nobody hit on me. Nobody was like, "Can I have your phone number?" They were just like, "You're so inspiring!" So also dismantling that just because I'm a cancer patient or cancer survivor doesn't mean that I don't have sexual wants and desires and that I'm not deserving of that.

I would love to see the movie about, or read the book about the breast cancer survivor who's having an amazing love life that has nothing to do with her chronic illness. Not like, "Oh, she survived," or this inspirational porn-type thing. It's just like, she's having really great sex.

I think that's where my advocacy is going. My hope is to keep pushing that this is not something we talk about in just a month. Not something we like all pay attention to because it's October.