In This Episode
DeRay, Kaya, and Myles cover the underreported news of the week—including high rates of dementia for Black and Latino women, Las Vegas persecution of minor sex-trafficking victims, and the life & death of Elder Malidoma Patrice Somé. DeRay interviews writer and a feminist policy analyst Anushay Hossain on her book Pain Gap: How Sexism & Racism in Healthcare Kill Women.
DeRay Mckesson: Hey, this is DeRay and welcome to Pod Save the People. In this episode, it’s me, De’Ara, Kaya and Myles talking about all the news that you didn’t hear. And then I sit down with Anushay Hossain to talk about her new book, “The Pain Gap: How Sexism and Racism in Health Care Kill Women.” My advice for this, we get to have the tough conversation, even when it’s uncomfortable, even in its imperfection. Recently, I had a tough conversation. I knew it was the right thing to do. I was working my way through it in real time, and it was imperfect but important and necessary. And I feel like in our lives, there are a lot of things that we need to do and say there that are imperfect or waiting for the perfect thing, or we are trying to find the best way, and sometimes you just got to work through it. So go do the thing, have the conversation. 2021, the truth is always the best story to tell. Let’s go.
DeRay Mckesson: Don’t go anywhere. More Pod Save the People is coming.
Kaya Henderson: My news today is about Alzheimer’s disease and other dementia in Black and Latina women. It turns out, and I did not know this until I read this article, that about six million Americans have dementia, two thirds of them are women. Black people are twice as likely to have Alzheimer’s or other forms of dementia compared to white people. Latino people are one and a half times more likely. And even though there’s an elevated risk for our communities, Black and Latino people are less likely to receive a diagnosis than white people. This is problematic for many reasons as you can probably guess. That means that our treatment, our access to treatment, is limited. It means that we can’t plan appropriately for our families. And lots of times it means worse health outcomes. Many of you know that these disparities come from systemic gaps. We have a lack of culturally competent providers, there are socioeconomic inequities, a mistrust of doctors, there is stigma about symptoms of dementia, education is not tailored to reach our high-risk communities. And there’s a basic lack of literacy about memory health in the United States. Most of you think that loss of memory as a normal part of aging, but apparently it’s not scientifically, and in the same way that your doctor can monitor your vital signs from year to year through your annual checkups, there are ways that you can monitor people’s cognitive behavior year to year through their annual checkups. In fact, you need those baseline numbers to understand when people are in cognitive decline. Many people don’t know that their, the annual wellness visit that is usually covered by your insurance, or at least the one that is covered by Medicaid, also covers a yearly cognitive assessment. But most people don’t know about it, and so they don’t access it. This is a huge issue because early detection actually provides the opportunity for early stage treatment. Family members and caregivers who are usually Black and Latino women need to know the warning signs to look for. They need to know what to do after diagnosis, and there are a number of clinical trials and new drugs that are available if you’re able to diagnose in time. Early detection also plays a huge role in how people want to handle their affairs. You have the opportunity to plan financially, to plan legally, to plan for how you want your wishes to be carried out. One of the downsides of a dementia or an Alzheimer’s diagnosis is that we often worry about a loss of liberty, autonomy over decision making, but the truth of the matter is if we are not vigilant, then we see things happening like the family that is lifted up in this article where a young woman, Aisha Atkins, was watching her mother cognitively decline and she went to one doctor and her mother was diagnosed as having menopause-related stress and prescribed antidepressants. Like many Black women in the health care environment, she did not feel seen or heard, and so over the course of two years, she got her mother treatment from other doctors. She saw a neurologist six months later at an Alzheimer’s research center. They diagnosed her mom with suspected early onset Alzheimer’s and prescribed a medication that actually worsened her symptoms. And it wasn’t until two years after that first neurology appointment that she got the appropriate diagnosis of frontotemporal dementia, which is the leading cause of dementia for people under age 60. Her mom was 56-years old, and so if we are not watching out for our parents and our aunties—because I’m not that far away from 56 these days—then we miss opportunities to provide the kind of care that Aisha was able to give her mother. Unfortunately, the diagnosis came too late for her mother to really outline how she wanted to be treated and Aisha ended up having to take care of her mother to quit her job and reorient herself in her 20s and 30s to be able to take care of her mother. We love our family members, we all want to take care of them, and I brought this to the pod because I had no idea that women were more likely to suffer from dementia and Alzheimer’s. And I sure didn’t know that Black people and Latino people were one and a half to twice as likely to have Alzheimer’s and other forms of dementia as compared to white people. And so I wanted to raise this so that when we see our family members not remembering or when we see them not being able to do things that they used to do, that it’s incumbent upon us to not just take people to the doctor and try to get the right diagnosis, but it’s incumbent upon us to persist and persist and persist because we know that the health care system is not designed for us and doesn’t work with us. There’s a ton of new research on Alzheimer’s and other dementia-related diseases, and the Alzheimer’s Association is working with the African-American community through outreach and partnerships with churches, the African Methodist Episcopal Church, the National Association of Hispanic Nurses, the Black Nurses Rock Foundation—they are doing community outreach to be able to reach our mommies and our grandmas and our abuela and in our abuelitas to help them understand what we need to do. And I brought this to the pod because we need to be aware of these things.
Myles Johnson: Today, I want to show my respect for mystic and scholar Malidoma Patrice Some. He passed away this week and he was a amazing and prolific mystic, scholar, and he really did his work to really bridge a kind of an ancient African intelligence with like a modern spin on it, and always looking at things with the modern world through that ancient African lens, rather. So really looking at what we were going through, what we were suffering through as African people, as Black-American people, and really comparing it and critiquing it through that lens and keeping certain traditions and ideas that are part of the ancient, specifically West African, tradition alive and in integrating intellectual ideas with spiritual ideas and making both of those things worthy and necessary and wise. It was, he was just one of my favorite people to talk to—excuse me—favorite people to listen to. I never got to speak to him. He also really advocated for LGBT and queer identity, not in a way where it was with a parade, but through his text and through conversations really advocated that a lot of the things that we see as homophobic and transphobic and queer phobic, these are new things that we learned through colonialism. He was talking about that since the late, mid and early ’90s. He was talking about how our gays, when it comes to gay folks and queer folks and trans folks is really warped by European colonialism. And we had, and queer folks, LGBT folks had a space in African tradition. One of his, one of the things that he said in one of his essays and interviews that I wanted to read was this as follows. “I don’t know how to put it in terms that are clear enough for a audience that I think needs as much understanding of this as this gender issue as people in this country do, but at least among the Dagara people, gender has very little to do with anatomy. It is purely energetic. In that context, a male who’s physically male can vibrate female energy and vice versa. That is where the real gender is. Anatomic differences are simply there to determine who contributes what for the continuity of the tribe. It does not mean necessarily that there’s a kind of a line that divides people on that basis, and that is something that also touches on what has become known here as gay or homosexual issue. Again, in the culture that I come from, this is not the issue. These people are looked on essentially as people. The whole notion of gay does not exist in this indigenous world. That does not that mean that there are not people that there who feel that way, that certain people feel in this culture that has led them to be referred to as gay.” Again, Malidoma really was just investigating and interrogating gender and sexuality and really pushing against the binary that we often take as just how things are. And it’s just not how things are. This is something that has been projected onto us. And I found it so affirming that somebody who was a straight Black man who was also really invested in African culture and mysticism was also not homophobic and not transphobic. I think we, you know, even on the internet, monikers like Hotep and things where we automatically think if a Black man is maybe too inside of their Afrocentric culture or mysticism, that it probably all also comes with a dose of transphobia and homophobia and queer phobia, but his did not. It came with expansive queer politic and it came with love. And he’ll be sorely missed. And I know that we, everybody who’s been touched by his work will continue to lead his legacy in creating technologies and ideas and theories that fit the African past, present and future.
DeRay Mckesson: So my news is about Las Vegas. And it was in The Washington Post. It’s titled “Sex-trafficked kids are crime victims. In Las Vegas they still go to jail.” And it really blew my mind. You know what happens is, in Las Vegas, there’s still a large economy of sex-trafficked kids of all gender identities. So trans kids, queer boys and girls, and like straight boys, every all types of kids are being trafficked, and by kids, I mean, under 18, are being trafficked in Las Vegas. And what happens is that it is often easier for the police to arrest the child than it is for them to get the trafficker. And it’s dangerous for the kid to get arrested because if the kid gets arrested and they don’t cooperate or whatever happens and they get released, it’s actually really dangerous for them when they go back to the actual trafficker, the John, because there’s this idea that you should have actually made a set of decisions so the police couldn’t find you, right? But the thing that really blew my mind is that in Las Vegas historically and actually still today, as the article notes, is that the strategy is to arrest the young people, because the system is like the arrest makes it easier to put you into services. That like by arresting young people, that’s how they get away from the person trafficking them, that’s how they get access to resources, that’s how they get connected to advocates. And it’s like, Wow, what a world that we live in, where people really do think that putting children in cages who are victims of sex trafficking is the best solution. And Las Vegas passed a law that said that in 2022, there’s going to be a new way to do this. There’s going to be essentially a dedicated space for trafficked kids to go so they can enter the recovery into society process or the re-institute into society and away from the trafficker and there’ll be a dedicated set of resources. But you know, it’s wild, the judge, one of the main judges who deals with these cases, he acknowledges that like the arrest strategy doesn’t work. The advocates are like, there are a million ways that you can get resources without arresting kids. But I really didn’t, I had no clue. And you know, the other thing that is really tragic is that there are a set of kids who, you know, they don’t cooperate or they’re not from Nevada so they go back, they get sent back to California or they can’t get reconnect with their parents, they get put into the foster care system or they sort of disappear again off the grid. It’s like I just didn’t even, I hadn’t considered the subset of young people who are sex-trafficking victims that we have literally just essentially decided not to build an infrastructure for. Like, we just didn’t. And they are falling through the gaps. They are remaining victims and we are throwing them in a jail cell and calling that the best gateway to services and to transition away from the trafficker into, back into their home or reintegration is through foster care or other processes not designed to deal with this issue. You know, it talks about in a California community that there are like two foster care programs that even specialized or have any sort of degree of specialization in sex trafficking victims. And it just, this is not an area that I had known much about before. It’s not something that we focused on in our organizing, and really, it blew my mind. I just didn’t know anything about the economy of sex-trafficked kids and the relationship between that and how the police funnel kids into jail cells as a mechanism of getting services. And it’s like there has to be a better way. So I left this with way more questions and, you know, want to find somebody bring on the pod to be an expert to talk about this in Nevada. So I’m excited, I’m excited to find somebody to help us all think better about what solutions look like. But this is one of those things that like impacts a subset of young people. And it doesn’t make the national conversation often, but it is important. So I wanted to bring it here to share.
DeRay Mckesson: Hey, you’re listening to Pod Save the People. Don’t go anywhere. There’s more to come.
DeRay Mckesson, narrating:: Let’s get into Anushay Hossain. Now the thrill of the American Dream can be misleading, especially when it pertains to quality of health care, specifically quality health care for women and birthing mothers in the country. She uses her book “The Pain Gap” to recount her memory as the Bangladesh native, giving birth in the U.S. and almost losing her life on the delivery table. Despite her work as a feminist policy analyst focusing on women’s health legislation, she was for the first time exposed how dangerous the American health care system could be up close and personal. Anushay was jolted out of her misconception of comfort and safety within U.S. hospitals, and she wanted to learn more about the millions of other women facing a similar plight. And here’s the book. Following in the footsteps of feminist manifestos such as The Feminine Mystique and Rage Becomes Her, The Pain Gap explores real women’s tales of health care trauma and medical misogyny with this meticulously researched, in-depth examination of the women’s health crisis in the U.S. How can folks be empowered to bring about the health care revolution women need? How do we do it? Let’s find out, with Anushay Hossain. Here we go.
DeRay Mckesson: Anushay, thanks so much for joining us today on Pod Save the People.
Anushay Hossain: I am so honored and I am a big fan, so thank you for having me.
DeRay Mckesson: So I’m one of the reasons why I’m excited to talk to you is that I get to learn about a set of things that I don’t know as much about. And your experience was so interesting to me. Can you, can you start by telling us how you got involved in policy, how you got involved in the work around women’s health? What was your entrance into that work? And then I want to talk about the book.
Anushay Hossain: You know, when you get to a point where when you write a book or you get to a point in your work where you have, where it starts to kind of make sense, you know, like everything that happened in your life, all the things that have happened that have led you to this point—when it’s happening to you, none of it really makes sense. Like why, how I got into the policy world, how I ended up working on women’s health had nothing to do with this dream I had to write this book. But now everything has kind of come full circle, you know? I mean, I grew up in Bangladesh, which is, in [unclear] Bangladesh, which is right next to, the small country, right next to India, but we’re kind of this huge development star. You know, we’re kind of known for empowering women, we’re the country that gave birth to microfinance and Grameen Bank, so I grew up, you know, watching America really implement, create, develop, and successfully implement, you know, safe motherhood initiatives in Bangladesh, really kind of introduce the concept of public health. And I never, I kind of grew up thinking that health care in America was like the movie, you know, just amazing. And I actually—amazing and always successful. I mean, when we were growing up, even though I grew up very privileged, you know, when we were growing up, when we heard that somebody was going to the states for any kind of treatments or medical care, you know, we were just like, Wow, that person is, you know, is going to live. That person has a real shot. And then of course, you know, you fast forward to almost I mean, I’m 41 now and my daughter is 10, and so you fast forward, you know, like two decades and I almost died giving birth in America WHILE I was a feminist policy analyst in Washington, D.C.! I was working on global health legislation, and I had no idea not only that it was possible to die giving birth in the world’s richest democracy, but that America was and still is in the midst of a maternal health crisis. So it’s a very ironic story. And the reason I started working on Capitol Hill, on legislation in the first place was because this was back in 2001, 2002, and so the U.S. had just gone into Afghanistan. And you know, that issue of Afghan women’s rights, there was so much political will at that time, right at the start of the U.S. invasion—I really, really wanted to be a part of that movement.
DeRay Mckesson: I had no clue about [unclear] Bangladesh’s issues in terms of the benefits of microfinance and all those other things. Now why do you, why is the book called The Pain Gap?
Anushay Hossain: The reason it’s called that is because, as you know or may not know, there’s a lot of gaps that women have to deal with. There’s a gender gap, there’s a pay gap, there’s a credibility gap, but there’s also a pain gap. Women’s pain is not believed, not taken seriously, and often dismissed and undertreated. So that’s why it’s called The Pain Gap.
DeRay Mckesson: And you know, I think about Serena, like I think about Serena in the hospital.
Anushay Hossain: Yes!
DeRay Mckesson: Even with money and fame people, they still didn’t believe her about her own pain.
Anushay Hossain: The Serena Williams story is so important. And you guys can edit this however you want but you know, when she went public with her story, people were so shocked. Right? Because the understanding is, the thinking was pre-pandemic—where we could still, you know, debate if racism was real or if racism exists, you know, now I think the pandemic has really kind of made that race, the role of race in health care and everything in America kind of undeniable—but when that story came out, people were so shocked. Not necessarily women of color, but other, white people were so shocked because the understanding was always that Black people were doing something wrong, right? Because what I have found out—it took me a good 10 years to figure this out—that America’s maternal health crisis is actually a Black maternal health crisis. You know, white women are dying in childbirth, but in America, women of color are two to three times more likely to die than their white counterparts. But Black women, it’s always starkest between Black and white, those two groups. The Black women are 243% more likely to die, giving birth in America. And we know now that education, fame, money, nothing will protect you from the color of your skin. Because I mean, the Serena Williams story came out and she like what the top athlete in the world? She’s paid millions of dollars to know her body. She was like, I have a blood clot. Like she knew it. She was coughing, you know, she was being dismissed. And finally, they took her in and they found a huge blood clot and she was taken back to surgery. And she could very easily died. And it happened to Beyoncé as well. But now we actually have the stat, that Black women who are college educated are five times more likely to die in childbirth in America than a high school, a white woman with a high school degree. So, you know, before it can be like, Oh, you know, Black people are not educated or it’s because people of color X, Y and Z—there are some health issues like hypertension, anemia, yes, that is very specific to African-American women, but that it’s racism, not race that is killing women of color in America.
DeRay Mckesson: I want to start with the first chapter. And why do you talk about your mom and your nanny? Like, why are they the way that we enter this story with you?
Anushay Hossain: Well, it’s so hard to write a book, and I really had to fight to write this book in the middle of a pandemic with my husband, [laughs] who I love so much. But yeah, you know, to have that uninterrupted time as a mom and when I finally got it, I kept thinking that the story and my journey with maternal health, working on it, started with me and my birth story. But once I got that quiet that I needed to write the book, I remembered my nanny. And I don’t know why I get so emotional about it now DeRay, like I came to the states when I was 18 to go to college, and I never told anyone this story. And when I started writing the book, it just came out. And now whenever anyone asks me about her in an interview, I get so emotional. But I also feel like she would have gotten a real kick knowing that I put her in the opening chapter of my book. So that’s just where my mind went, right away, where my mind and my heart went. And that chapter came out pretty fast. You know?
DeRay Mckesson: I wanted to note too, you know, in, I think the third chapter you talk about that you talked to a 100, over 100 women in preparation for the book. What was that like, like, what surprised you? What were you like, Wow, this is a theme that I wouldn’t have known was a theme? Like, how are those conversations? And you know, obviously [unclear], what was that like?
Anushay Hossain: Well, as you can tell, I love to talk, but I really love women stories. And what shocked me right off the bat was how everyone had a story. Like, that’s where I started. I started this book by talking to women, and I was shocked at how every woman has a story. Every woman has a medical misogyny story, has a sexist story dealing with their doctor not being believed, you name it. And then every woman of color has a sexist and racist story. So then I realized that this is actually a kind of a scandal that no one is talking about. And women aren’t really talking about because we know we’re not going to be believed.
DeRay Mckesson: Until your book. Here we go.
Anushay Hossain: Yes, exactly. Until my book. That’s a real conversation starter.
DeRay Mckesson: Now, one of the things that I, that a lot of things that are new to me—you talk about clinical trials in the book. Can you tell us what is the lesson there?
Anushay Hossain: What I really love about my book and it happened very naturally, was that it goes from my personal stories to women’s stories, to there’s a lot of hard data in the book. There is a lot of research that went into this book, and what I really love now is that a lot of things—not love, but I’m so happy—because a lot of things that women have been saying or people of color have suspected for a really long time, like we now have the research to back it up, which we didn’t before. There still needs to be a lot more research. But I was absolutely mind-blown about the systemic way women have been excluded from clinical trials and medical trials in the world’s richest democracy. I mean, it is like infuriating and also it’s just mind blowing. I cannot believe it. I can’t believe people are not talking about this all the time. And while I was getting infuriated finding all this research that you know, the NIH, the National Institutes of Health, was not even, there was no mandate to include women in their research until 1991, and even then, you know, even now like there’s big problems. It hasn’t gotten any better. And they’re not—also forget women—it’s not even required to be diverse, racially diverse. So the standards for health in America is a white, middle aged man. And it has serious health consequences for everybody, but of course, in my book, I’m focusing on women. And while I was writing about it, the COVID vaccine trials happened, and we saw women be systematically excluded again, pregnant women, from the trials of people perhaps the most anticipated vaccine of our lifetime. And it’s a very interesting thing, there’s kind of like an obsession, I feel like in American medicine with protecting the unborn baby or the fetus, and a complete disregard for women’s health and living breathing women. I mean, I think I went on TV a few times just being like pregnant women want to be tested on. We don’t have a vaccine for everybody until we have a vaccine for pregnant women. And now we know that the vaccines are fine, and they didn’t, you know, kill the baby, kill the woman or anything. So they offered the protection that women needed, but women really have to find out on their own, right? I feel like it was kind of, you know, kind of violence against women that we didn’t prioritize pregnant women and pregnant people in the clinical trials for the COVID vaccine.
DeRay Mckesson: So we covered on the pod that the test dummies are, they’re not women’s weight for car crashes.
Anushay Hossain: Oh.
DeRay Mckesson: So they only test, like the dummy is a man.
Anushay Hossain: The dummy is a man.
DeRay Mckesson: [unclear] died because like, you know, we don’t test it. And what about the trust gap? You talk about the trust gap. Can you explain that to us, and why the trust gap or knowledge gap, why they come up? And [unclear] and how do you close them, or is this is just something we study>
Anushay Hossain: The really important thing about my book is I’m not talking about cancer, everything is solvable. It’s a really big problem that women are not believed. We have a trust gap and a credibility gap. We are not believed about our body. We’re not believed when we say we’ve been raped. We’re not believed when we say we’ve been harassed. We’re not believed when we say we’re in pain. It’s the default to think that women are crazy, being hysterical, imagining it, and not telling the truth. It’s really fascinating. One of the, one of the most radical things I propose in the book is: believe women. You know, believe women. Believe women of color. You know, when we tell you we think something’s wrong, when we tell you where in pain—so much of, so much of things go wrong in the health care world and in the world of women’s health because we’re not believed or taken seriously. So it was actually Maya Dusenbery who in her book “Doing Harm” about, you know, how lazy science and misogyny and sexism are basically killing women unnecessarily— she’s the one who identifies that there’s a trust gap, and then there’s a knowledge gap. There’s also a serious lack of research done on women’s health. I mean, going back to the crash test dummies for cars. Ambien was only tested on men, and then they found out that women take an additional eight hours to metabolize the medicine, so it was really dangerous for women to drive on Ambien. They had to pull it from the market and change the dosage and, you know, put that that warning on. I mean, that’s really dangerous stuff. And you know, there’s all, there’s a whole section about heart disease as well, but you know, I can talk about that later. But yeah, I mean, it has serious consequences and serious impact on women’s health, the lack of research.
DeRay Mckesson: If people—there are two questions that we ask everybody, and the first question is what a piece of advice that you got over the years is stuck with you?
Anushay Hossain: Hmm. Oh gosh, I have so many. I’m like, I’m so, I’m so nerdy. I like love quotes and I keep quotes and things people tell me. Well, I think it has to be something, you know, my dad always gives the best advice. I wish somebody had told me just to, you know, shut up when I was younger and listen to everything he said. Well, a lot of things have stuck with me, but one thing that he said that really stuck with me was: be on time. He always said, and you know, he is like worked in government, he was like such a big kind of political icon in Bangladesh, and he is always on time. He’s never late. And we are like, culturally, always late. Like Bengalis are kind of notorious for coming like two hours after whatever time, you know, [laughs]. So I love that he instilled that in me. He said, he actually said that’s the key to success: be on time.
DeRay Mckesson: There are a lot of people who are like, I did it all, right? I emailed, called, testified, read her book, read his book, read their book, read all of them—and the world hasn’t changed in the way they wanted it to. What do you say to those people?
Anushay Hossain: Yeah. Oh, you know, it is such a politically depressing time. It can be. But I think what I love so much about America is if you see something, if you want to do something and it’s not being done, or if you have an idea and you don’t see it, [unclear] And I don’t think it’s ever been a better time to, you know, be proactive. I mean, look, start a campaign. You know, see what you, see what you need. And doesn’t have to be political, because it’s the advocacy. So much is, I mean, look at the stuff that you and I talked about today. I didn’t know so much of it even last year. So I think information is, you know, I know information and knowledge is power. So a lot of it is just, you know, if you’re passionate about something and if you feel like there’s an issue that more people need to know about, then be that person. You know, be that leader. Do it. Do it and inform and educate as many people as you can. You know, I know it’s so cheesy, Gandhi’s quote about being the change that you want to see in the world, but it’s really true. And that’s what I love about, about advocacy and just being like such a big feminist that I am. [laughs] Go do it, you know, create and bring about that change that you want to see. Because, I mean, what’s the alternative? Are you going to wait for it to happen? Wait for somebody else to do it? No thanks. No thank you.
DeRay Mckesson: Well, we consider you a friend of the pod. It’s been great to talk to you. And everybody, you need to go get The Pain Gap right now. Thanks for coming.
Anushay Hossain: Thank you so much. Thank you so much for having me.
DeRay Mckesson: Well, that’s it. Thanks so much for tuning into Pod Save the People this week. Tell your friends to check it out. Make sure to rate it wherever you get your podcasts, whether it’s Apple Podcasts or somewhere else. And we will see you next week. Pod Save the People is a production of Crooked Media. It’s produced by A.J. Moultrie and mixed by Charlotte Landes. Executive produced by me, with special thanks to our weekly contributors Kaya Henderson, De’Ara Balenger, and Myles Johnson.