Black Women are About 40% More Likely to Die from Breast Cancer

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Key Highlights

• Dázon Dixon Diallo emphasizes the nurturing and lifegiving aspects of breasts, shifting focus from their sexualization to essential health considerations.
• Dion Haywood is highlighted for her leadership and advocacy in improving health services for marginalized women, particularly those diagnosed with triple-negative breast cancer.
• SisterLove's mission uses reproductive justice framework to promote breast health awareness and empowerment, particularly through the NANA Project
  
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Transcript:
(00:00) [Music] BK Edmond (BK): Today we are blessed to have Dr Dázon Diallo, who's going to be an interview for our podcast.

Dázon Dixon Diallo (DD): It's so good to be on the other side of your mic thank you very very much.


BK: She was happy to be here she did the first interview of me once we made the book. Okay, in terms of breast cancer survivors, or people who've dealt with breast cancer that you know, who who are you speaking on behalf of?


(01:04)  DD: I unfortunately you know you know being a black woman who has worked my entire life with black women and our sexual reproductive health, it's a whole lot today. I think at this moment I'm gonna have to speak on behalf of my sister Dion Haywood.  I'm gonna have to speak with the voice of my sister and light Gina.  I also want to speak on my sister who never knew me, but I have followed listened and played all her music, who is Lucy Blango, who is a musician who also succumbed after more than four bouts...


(01:42) with breast cancer in South Africa.

BK: Yeah and it's a global thing when we talk about, what in the first one you mentioned was your first friend's name is,  Dion Haywood, when we talk about Dion Haywood, what is it that she what makes her special?

DD:well what makes Dion special, first of all, she is a leader in her own right in the same kind of work. Dion is an Executive Director of a fantastic organization in New Orleans called Women with a Vision, and she's been there since the organization was started and she's


(02:18) been in leadership for about 25 years or 33 years. Dion brings I think the same spirit and power of leadership that she has led with that organization that has primarily focused on women in the margins women who are living with HIV, women who are addicted to drugs, women who are sex workers, transgender people who have been, you know,  penalized for their survival choices in their work ,and then she takes that power and as a person who's diagnosed with triple-negative breast cancer twice and upended how she was treated as


(02:57) a black woman, as a healthy sized Woman, as lesbian in a southern city, she even changed how services were delivered to her and other women during her bout with breast cancer. That's why Dion stands out for me because she brought the leadership and that social changes Spirit to changing how they engaged with her as a breast cancer patient.

BK: There you go. When you talk about the things that she gave you what do you what of the lessons that she gave you in life what do you value the most which lesson do you value I think the one most is?


(03:32) DD: That she taught her providers to listen to the women, listen to their stories when they tell you what they're experiencing, when they tell you what they know about their breasts, about their bodies, listen to them. I think that if they had listened to her she probably actually would have avoided that second bout and she believes that herself if there was a short message that you give to young women who are about breast health.

BK: Yeah what message would you give I think the most important thing that I would give as a message is that?


(04:07) DD: There is never a time when all of you isn't a part of all of who you are, and so taking care of all of you is what matters most. That from your mind to your body, and you know our breasts are not sexual organs. A lot of people, because we get objectified that way, but our breasts are nurturing. Our breasts serve us. Our breasts hold hormones. Our breasts hold a special place when it comes to giving life to other people in terms of birthing children and nurturing children and nourishing children. But in addition to that, it's just it's almost

(04:50) like our hair is, you know.  Everybody has different risks and we do different things with them and so having pride, right, in what you can do with them no matter what they look like right. I'm serious because if somebody who walks around with big ones right, there are some other things I make jokes about them, but at the same time I take them very seriously where I'm checking them all the time because they are connected to the rest of who I am and I think that that is the most important thing that

(05:21) I would tell young women to take care of just like you take care of all the other things that people see in terms of your beauty. Take care of your breasts in terms of the beauty you see in yourself.

BK: Let me go ahead and ask, I have to ask the question: the same first question you always ask me who is and who's your peace like your grandmother.

DD: Yeah, that's where this whole thing that's right. So you know that I'm Dázon Dixon Diallo. My family name is Dixon. I come from two amazing educators, from two lines of

(05:56) incredible human beings throughout. I am originally from a small town, Fort Valley, Georgia.  We know it as Peach County. I grew up in an HBCU (Historically Black College & University) town right, so think about it. I talk about how I grew up with Black privilege. When I say I grew up with Black privilege, I grew up in a Black town with a Black family that's still intact. My family, because they're educators, I had that kind of experience. Some people would call that middle class. I was like I didn't have all of those things that the rich

(06:27) people in my class had, but I come from a place where education and health are completely intertwined. And I come from a people who believe, as my daddy used to always say, "Well as long as you can read, you can do anything." So I come from that, that you have the power and the spirit and the ability. That as long as you continue to learn, you can continue to change things, and that's what I've been able to do. So I came from that. I think being the rest of that Black privilege story is growing up in a Black household,

(07:09) in a Black college town, and coming to a Black college, not only in Black college but the largest cluster of historically Black colleges in the world in a Black city. And then my intro into this whole life was I just happened to be on my campus at Spelman College the summer that Billie Avery brought together the very first ever National Black Women's Health Conference. That was in 1983. Can you imagine? We've been in this country how many hundreds of years, and that was the first time we had a national conference...

(07:45) ...on Black women's health. That changed my life, and so then after working for other people for a little while, I ended up starting my organization, SisterLove, which became a Black women's organization well and so that's my whole Black privilege trajectory.  

BK: You got a beautiful one. What I'm going to do, can you go ahead and quickly give us a tight bullet on SisterLove, because SisterLove is really taking you all over the world internationally.  

DD: What I want to do is I want to lead...

(08:15)  SisterLove is a 33-year-old sexual and reproductive Justice organization. We started with a lens on HIV and AIDS, but because for me, I came in this from Reproductive Rights, so reproductive health, and rights, and for me, HIV for women, especially black women, especially for cisgender heterosexual black women, is an issue of sexual Reproductive Rights right, and so that's what we have built.

(08:46) We have built an organization that's based on intersectionality. That's interconnectivity. So whether we're doing direct services, or whether we're doing policy community education or research, all of that is connected to us working together to not only center people with lived experiences so that we can find out how to meet their needs best, but it's also the way for us to figure out how to solve our greatest problems because it's through the lived experience that we learn what the best solutions are. So that's who we are.

(09:15) We're consistently innovating based on those lived experiences and the intersections of all the things that show up in that whole experience as a Black woman.

BK: Very quickly, we were talking about one of the things that we start with the NANA grant, where did you get the concept of doing a grant, or even applying for a grant, to try and address triple-negative breast cancer? She is the writer/author of, her team was the one who created the NANA project, of which this...

(09:53)  book, Nana and the Bushwoman that I authored is part of,  how did you come up with that?

DD: If I drew back the lens a little bit, it sounds odd when you come at it this way, but I am one of those people who fully embraces what I call the alignment, right? And that means understanding that everything in this universe is because it is. I don't believe in that, you know, things happen for a reason. I believe that things happen because they happen, right, and so what you have to do when you embrace that, is recognize it is happening.

(10:29) First and foremost, I grew up in a household where my grandmother was called Nana, and I did get to travel the world, and almost everywhere in the world somebody has a "nana", and the second part to that is I had already been working on this other initiative where a good friend of mine who was a musician, Mausiki Scales, already that Mausiki had just dropped an album and on that was a tune called First Nanas, which we used for another initiative that we were doing around solidarity building in Black women's sexual and reproductive health.

(11:05) That was the WomenNow Summit that we do every two years in Africa, and then you had come along with Nana and the Bushwoman, right. Now remember I've been doing my radio show for 29 years, and every interview I do starts with we are sitting at my Nana station table, so Mausiki's song, BK's book, my radio show, SisterLove, my nana who inspires me all the time, rest her soul, it just totally made sense for me,  just totally made sense that we were already looking at how do we bridge the arts with the public health work that we're

(11:47) doing, because we are a people of culture. We are people who we can read books, but we read books where our stories are in them. And we listen to music, but we listen to music that has our beat in it, right. We learn about our health from people who look like us, who sound like us, and who can express things the way we can receive them, right, so it totally made sense to me. Let's put all these people in a room in a project together and see how we can change the conversation. Now what we also do which is important, and that's what...

(12:21) ...makes us a little different, is that we also work in the whole field of human rights. Reproductive justice is about building dignity and equity, especially for those who are in the margins. So even when you look at the breast cancer movement, even when you even go further deep and look at the breast cancer movement in Black people, there are still Black women who are not centered in that movement, black women living with HIV. I just got one of my women in our leadership program received her stage four diagnosis

(12:57) with triple-negative breast cancer last week. I talked to a woman I was in London with two weeks ago, and the woman who organized and invited me to this major event told me after I talked about this project, she said "Dázon, you don't even know this", she's a woman living with HIV in the UK, "...I'm a Survivor of triple-negative breast cancer", and she's now been a part of the breast cancer movement. So understanding that women living with HIV experience triple-negative breast cancer, lesbians who are

(13:29) Black experience triple-negative breast cancer like my friend Dion, and having to find themselves a center in that work, people who are living with disabilities experience triple-negative breast cancer, as well as transgender people, including masculine people assigned female at birth experience triple-negative breast cancer. You don't see the faces. You don't hear the stories of their lived experiences and all of the wonderful breast cancer messages that are out there that speak to their lived

(14:01) experience, you know. That's why we're doing what we do.

BK: Very, very interesting, and you're right. One of the things that it called upon me to do was do a deeper dive in terms of health care forums for lesbians and transmen that were born females and transitioning to men, in terms of the outcomes, and one of the things is, believe it or not, everyone will say there's no good data. It's like it's the work. It's almost as bad as it's almost like

(14:35) it's akin to the argument with gun violence, you're not allowed to study gun violence in America.  In other words, there's no federal funding for gun violence in America, and it's almost like there's been this major oversight in terms of this entire demographic in terms of just simply getting the right quality information so that you can treat them based upon what their needs are. I commend you on the work that you've been doing, I also

(15:10) because of that, I attended the Black Mothers for America in DC, but I didn't just attend. I attended to pay attention, so I was able to see some of the speakers and get exposed and get a full detailed lesson on the concept of human rights, how they tie into reproductive rights, and how they tie into the whole concept of Black women's rights. Understand that a lot of times healthcare is not designed to protect the Black woman.

(15:45) DD: That's right. So one of the things that we're trying to do with this NANA Project is put things in place where we can broaden the base of people that we bring into the fold in terms of proper breast health care. And we're bringing the reproductive justice lens to breast care, right, so the reproductive justice lens, and what people have to understand about where this notion even comes from, 12 black women were sitting in a room at a conference in Chicago and it was at the time when Hillary Clinton was still the First Lady,

(16:16) ...and they were starting to talk about this whole new Universal Health Care that was probably the first time to talk about how to put that legislation together. To appease the Conservative Right, the Republicans decided to leave out reproductive rights, and so the black women were like, "well how are you gonna, most women's healthcare engagement is around our reproductive health?".  So how are you going to leave that out of Universal Health Care just to pass a piece of legislation? We need something

(16:45) more than that. And not only that, but even more.  We're not even talking about rights at this point. We're talking about maternal health.  We're talking about where people give birth. How they give birth. So we're talking about traditional birth. We're talking about what happens with midwives. We're talking about poor women who are being sentenced to sterilization because of drug use. Whatever it is, it's so much bigger than this issue around abortion and contraception absolutely that we need.

(17:12) Another thing we need to think about the whole experience of social justice, which is what we need as Black people, and reproductive rights, which is what we need as women, and put them together and that's how we get reproductive justice. And so now we're bringing that to the breast cancer space, to talk about homeless people, how are we addressing women who are homeless. There's a bigger issue than self-breast exams and getting mammograms. Rhere's a discrepancy in care in terms of actual

(17:42) treatment. Exactly and where and how they get that care. How do the policies affect Black women and how is it funded.

BK: Let me take you to another thing very quickly and stuff we always talk about stories and stuff like that. Nana and the Bushwomen's story has a happy ending, everything like that. When you talk about this project, can you describe what a happy ending is for this project?

DD: A happy ending I think for this project is one we're going to teach people who are already deeply committed and engaged...

(18:16) in this work how to center the people who have been left in the margins. That's the first thing. So if we start to see more programs that include those stories, that include those messages outside of the ones that we're working to include, then that's a happy ending. Another happy ending, of course, is that we're going to have a whole lot more people who understand how to do self-exams, and that they not only, as the doctor that we spoke with, what about a year and a half ago, who said that she's an MD who

(18:44) had just been diagnosed,  I remember every word she said, and when she said that she truly believed that at least for Black women, that it's not about testing your, or checking your, breasts once a month. She's like I should have been checking mine every day, because if people understood the difference with TNBC (Triple-Negative Breast Cancer) versus some of the other forms of breast cancer, it is aggressive. It is rapid. You can feel a tiny lump today that can be a golf ball by the end of the month.

(19:15) So I mean, some changes happen a lot more rapidly that we should be aware of, and so those are the kinds of things I want I want people to know, what it means to be Black and to have a female identity at any point in your life, and let's be real now, as long as you got hormones ,as long as you got lymph nodes and glands, and you got chests and breasts and nipples, you should be checking right? It doesn't matter what your gender identity is. We want people to know what this thing is and why it's...

(19:46) ...so deeply about us, and that's the same way we've been able to address HIV for over 30 years.

BK: There you go. Well I think that uh for the sake of time, we're going to be, I'm going to have to cut some of this off, but I thank you for including the BK Edmond Project in the NANA Project overall all. I hope that in the end, at the end of the six months, we come to terms to create some of this vision, and to create that messaging that can reach that broader public while we're getting our feet.

(20:22) I think over the next month we're excited about the 28th of October event, but I'm more excited about the fact that we're going to have a presence at a black homecoming next week at Clark Atlanta. You'll be able to come over and see the NANA Project where we have a QR code where we're teaching people the exam, and getting people and letting them, and making them aware of triple-negative. Let's just be the first of many, many that are right. Well the second one's going to be the Morehouse,

(20:48) Spellman, and so literally what we've been able to do is a partner with the pre-med students at Clark Atlanta, and with an alumni group at Clark, to put this out, and then we're partnering with the pre-med students at Morehouse College to be able to do it for Morehouse homecoming. Also, we're going to be trying to come out with some other formats that are of this message, the health message that is broader and of course, we'll depend on your expertise and guidance as...

(21:23) ...we do that. This is BK Edmond I'm going to close out. Sister Dázon, can you take us home? First of all, gratitude goes both ways. I want to thank you for saying "yes", because I know this is your baby too, and you trusted us to put it in a framework that's going to do things differently in the community, and you're already making that happen and what I think is most important is that it doesn't matter what station in life we are in. If we have an idea, if

(21:57) we have a story, to tell it because your story is your power, and that story has the power to get connected to someone else's story and that's where we find the possibility for change. [Music]

Check out our Triple-Negative Breast Cancer Toolkit for info on how to check yourself for breast cancer, free mammograms, and more