The Deadliest Disease in America

What’s the“Nobody wanted to talk about what racism looks like in healthcare,” said Crystal R. Emery, filmmaker, author, activist, and public speaker, speaking of her challenges in making her latest documentary. In “What’s the Deadliest Disease in America?”, Emery explores the history of racism in American healthcare and exposes the continuing disparities in care for black, brown and indigenous people receive. ABILITY Magazine spoke with Emery about her film and her personal experience as a quadriplegic African American woman.

Karina Sturm: First, I wanted to say I love the title of your film. Can you summarize the film for people who haven’t seen it and just know the trailer?

Crystal Emery: Well, the film is about racism and healthcare. It is an inside look at how people utilize the words “inequity” or “disparities” and “racism,” and they don’t really know the meaning of what those terms. And so, the film offers the opportunity for you to experience it in a different way that you can’t avoid.

Sturm: Can you tell me what got you interested in that subject?

Emery: Actually, it was challenging. I had become a quadriplegic, and so I said, “Oh, well, if you think you’re that great of a director, why don’t you make a film about disparities in healthcare?” At the time, I had eight doctors–eight great doctors–and not one of them was a doctor of color. And only one of them was a woman. So, I was like, “What?” And I got very, very sick three months before the hospital stay. And I was in and out of the hospital in a way that I had never really known–that within that time–the overt, subtle racist behavior within healthcare. And that would make the things we would capture were that much more impactful. I had just experienced a lot of it. It was very frustrating.

Sturm: You also made a film about physicians, especially about black women, in healthcare. Can you tell me more about your previous film?

Emery: The film “Black Woman in Medicine” is just that. It’s about black women in medicine.

Sturm: (laughs)

Emery: What I loved about making that film is that they did not allow what I call the “ism” word tag, whether it’s race, whether it’s gender, whether it’s socioeconomic, to deter them from reaching their dream. All of these women are major contributors to the health field, and it doesn’t matter whether they’re black, brown, or white. They’re true healers, and I wanted to highlight these amazing women.

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Sturm: I remember you said, “You can’t be what you can’t see.” I found that a very fitting quote. Did you come up with that? Did somebody say that to you?

Emery: I don’t know who originated that quote. Because you hear it everywhere right now. I heard it from Dr. Jocelyn Elders one time. I made a virtual reality game, “You can’t be what you can’t see,” where the player has the opportunity to be a doctor in the emergency room. And they are the decision-makers, the one who is controlling the game. But you can’t be what you can’t see.
Sturm: About the virtual reality thing, can you tell me more about that? I don’t know anything about how virtual reality works. How did you make the whole experience? Who helped you? What was the process?

Emery: Well, the first thing is that I received an invitation with a goal create a video game. I had never made a video game in my life.

Sturm: (laughs)

Emery: So, I set out. There was an office called Games for Change. I went to that in New York, and I met other people with all sorts of VR and AR, just amazing. Are you telling me you’ve never played a video game?

Sturm: No, I mean I’ve played video games, but I don’t know how you create virtual reality.

Emery: It’s a video game. I wrote a script. The thing about virtual reality, like a film, it’s not linear. It is the player–you always have to remember that you’re creating from the player’s eyes. You don’t see the doctor because you are the doctor. So, it is a little different. Creating a character, creating the avatars, their eyes, their noses, their voices, working with programmers who build the back end of the game. It took about six months; and we presented it on the stage of the National Academy of Science.

Sturm: That’s quite fast. Six months isn’t much. I was really impressed. Your recent film was 10 years in the making. Can you talk more about that?

Emery: I did. I started 10 years ago. I could not raise the money to continue shooting because nobody wanted to talk about what racism looks like in healthcare. Nobody really. But given all the things that are happening in the world right now, we are forced to talk about it. We’re forced to look at what inequities, what systemic racism looks like and how it permeates everything around the world, in every society.

Sturm: When did you get the funding so you could continue producing?

Emery: It was a long process. It wasn’t like, “Oh, you have the money. You’ve completed everything.” I’d raise a little money, I’d shoot something. Then I’d raise more money, and I’d shoot something else. I had the opportunity to interview Dr. Clara Y. Jones two separate times. That was great because her definition for three levels of racism, whether it’s institutional, personally mediated and internalized. It was an amazing opportunity to capture that. And that Dr. Marcella Nunez-Smith who now is one the advisors to President Biden’s COVID-19 task force, I had interviewed her last year. So, it evolved as I raised money.

Sturm: What kind of stereotypes, what kind of racism did you experience during shooting? What experiences did you make?

Emery: This is a funny story. I was shooting in a hospital here in New Haven, and my crew–Because we were shooting a reenactment scene, the hospital gave us this infectious disease ward. It was like a little chamber, and it was empty. So, we were able to shoot in there. I got separated from my film crew. So, I wandered around the hospital, and I asked a doctor where this ward was, and he said, “Oh, no, no, you can’t go there.” And I said, “Well, I’m shooting a film.” And he said, “Oh, no, that’s not the ward you’d need. The ward you’d need is on the second floor.”–which was the psychiatric ward. And I said, “No, no, no, I’m here shooting a film.” And he was like, “Lady, do you need me to get security?”

Sturm: Oh!

Emery: I was like, “Yeah, right, I need you to get security.” He got security. I told them who I was. I mentioned the name of the president of the hospital, and he said, “Oh, you’re the film crew. They moved to—” whatever floor. The doctor just stood there looking at me like I was crazy. He could not imagine that a black woman was possibly shooting a film.

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Sturm: Can you elaborate about the historical background of racism in medicine? Where did we start and where are we today?

Emery: Well, where we started was the day that black bodies entered America. I mean, look at the 1800s trials and abuse of people of color, also Native Americans, also Asians, and that just progressed and progressed and progressed. Even now, see Henrietta Lacks, where her cells are one of the leading components in producing cancer drugs, and yet her family does not receive any of that money, those billions that have been made. But the exploitation of her DNA. And even now, we look at COVID-19 and we look at why people of color are dying, and it’s not something that just happened today. There was a doctor last year, a medical doctor, who got COVID and she went through hell in a hospital but not receiving the right care—and eventually she died. She was brave enough to share her story before she died. So, it is ongoing. As long as there is racism in any form, it will exist.

Sturm: What was your own personal experience as a woman who belongs to more than one minority, you’re a black woman, you’re a disabled woman, how did that affect the making of the film, the lens through which you showed all the stories?

Emery: I don’t think it affects the making of the film because what you left out there in all of those titles or identification markers is that I’m a filmmaker first. I was born an artist. I’ve done this my whole life. I think that being a black woman is a wonderful, great. Being differently abled is very challenging, but I don’t think that either of those has to do with the process of making a film. I think I am more the ties in how to tell a story, in influencing the narrative because you are hearing and seeing through multiple eyes, multiple ways.

My crew insisted that I bring my own stories into the film, about how I was denied physical therapy. But that did not influence my choices of stories. It did not influence the hard facts of—because documentaries have to be based not on the particular person, but they have to be based in facts. And whatever you’re dealing with doesn’t mean that someone with that same issue of health deals with it the same way. Not at all.

Sturm: That’s true, yeah.

Emery: So, I try to give voice to multiple voices that are not heard. My voice is my voice. It’s through the lens of my experiences. But as a storyteller, as one who is creating a narrative, it is my job to be very clear.

Sturm: Can you tell me what the most challenging part was about producing this film?

Emery: Money.

Sturm: (laughs)

Emery: The most challenging part is money, amazing money. Convincing somebody that you’re capable of delivering, convincing somebody who doesn’t really want to talk about racism and won’t give you the money. That is always the hardest part for most filmmakers.

Sturm: How about the emotional part? Were there episodes in the film that were emotionally draining for you? How did you deal with all the emotions that come up?

Emery: I’m a filmmaker.

Sturm: (laughs)

Emery: It is my job to take my audience on a journey that does have emotionality. But that is how we process. Originally, it was called “The Audacity of Hope,” which was a play and President Obama’s book. As I was looking at the footage, I said, “Oh, this is the deadliest disease in America.” So, the footage actually dictated what the title would become. As far as my connection to the emotionality of it, I’m a filmmaker. To absorb it, but you look at how best to tell the story. I think that people get caught up in, “Wow, this is a riveting emotional piece!” That doesn’t necessarily mean that that 30 seconds tells a story that can be digested by an audience.

Sturm: What brought you into filmmaking?

Emery: I was born to do that. I directed my first play when I was in third grade. My brothers were Batman and Robin, and my other brothers are Cato and Green Hornet. I was born to do this.

I’ve always been a storyteller, whether it’s theater or film or literary, any form.

Sturm: Are all your films are centered around social issues and change?

Emery: Well, I’ve produced some actual shorts that are literally on 35mm.

Sturm: Oh, nice!

Emery: These documentaries are what you see because that is what has been in the biggest ones here.

Sturm: What do you want people to take away from your films?

Emery: My goal is to help open your eyes a little more. Recently, there was a young lady there who cried, was crying, because she was a woman of color. I asked her why she was crying, and she told me that she had gone to the doctor and that they had done some procedures that were preventing her from being able to have children. She didn’t even know what was done to her.

I want people to understand it’s not just about people of color or white people, it’s about all people, that racism affects all of us. Either we are the receiver of the negativity or the giver of it, or even when we remain impartial. Because when you remain impartial and do nothing, you really are propelling it forward. I want people to be able to understand what it looks like and then to look within themselves and how they can make change on an institutional level and an individual level. Because we create institutions.

Sturm: What kind of feedback have you gotten so far?

Emery: You always do test screenings. People say different things. There is a part that reaches everyone. Has anyone said, “Oh, hell no, I totally hate this film?” No. But what they all say is, “This has given me a lot to think about. How can I be okay? What can I do today to make a difference?”

Sturm: What can people do to make a difference?

Emery: Start with yourself. Look at how you reference people. Look at how you respond to when you see something that you know damn well is wrong. What do you choose? Do you choose to avoid it? Do you choose to close your eyes? Or do you choose to take a stand and say, “That is wrong”?

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We did a workshop in Memphis and a doctor said, “I grew up my whole life with my parents, my grandparents, calling everybody niggers.” And he said, “I hear that from a lot of my colleagues. If I cannot stop that in my own house, how could I stop that in my work environment?” I said, “It starts with you the first time you say, ‘That is not acceptable,’ and being willing to stand in that truth.”

Sturm: What do you hope your film will change? Or a little bit more of a loaded question, what needs to be changed in terms of racism and medicine?

Emery: You’re making it sound like racism and medicine is its own separate category. It’s not. Racism is racism, period. It starts with education, where you live, what tools are available to you. And all of those contribute to negative health outcomes. The film is not about the negative, it is using medicine as an example or a vehicle. But it’s not limited that way.

Sturm: How can we do better?

Emery: We can do better by wanting to do better. Somebody said, when I said, “You can do better by wanting to do better,” they said, “Yeah, but I don’t know what to do.” I said, “There’s books out there. There’s tons of research you could do. But it starts in your heart.”

Racism is in existence because you need to feel better than me. You need to identify a reason why you are superior. And race is easy because it’s very obvious. It’s a color. We see you. So, to dismantle that, you have to first start looking within yourself at what you choose, how you respond to people. The biggest thing is, “I don’t have any friends of color. I don’t know any Latin people.” I’m not telling you to go out and meet any. What you can do is research. You can look at documentaries like this, so we get to understand what part of this journey is yours.

Sturm: I also know you’re very involved in URU. Can you tell me more about the organization and what you do there?

Emery: URU the Right to Be is content production company. We utilize all kind of media at the intersection of arts, humanities, technology, and science. What does that mean? It means that you have to reach people where they are, and we are multi-dimensional people. So, you need multi-dimensional language, literacy. That’s what we do.

Sturm: That sounds great. What’s next? Another film?

Emery: Right now, we’re doing a 10-part series called “Our Humanity” with Dr. Marcella Nunez-Smith. I’m working on a film called “Taking the Pages Down”, where I’m utilizing science as a subject. Normally you have some doctor, an expert. I’m utilizing science as the expert.

Sturm: That sounds interesting. When is this coming out? Is there already a plan?

Emery: Oh, you won’t see that until late 2022. COVID has held up everybody.

Sturm: Where can we see your current documentary?

Emery: “The Deadliest Disease in America” is coming September 10th at Cinema Village Theater. It will be there for seven days, and then we’re working on a distribution plan.

Sturm: Can you share a bit about your condition and how you were diagnosed?

Emery: You don’t have enough time for that conversation, let me tell you. When I was 11 and 12, I started falling down. Everybody thought I was just sort of bumbling. And then my hip slipped out of place. And they taped it back together, but I kept falling down. It wasn’t until I had slowly started walking with a dropped foot. It wasn’t until I was in college that I ran into my old physical therapist (from) when I was 12, who was doing his internship. I was one of his patients. I ran into him in my twenties, when I went to get physical therapy. Now he’s running a practice. He said, “I think you have a disease called Charcot-Marie-Tooth. He said I should go to the muscular dystrophy people.

At the time, they knew what chromosome it was. And it really pissed me off because the science community, where they have made great inroads with multiple sclerosis and other diseases, Charcot-Marie-Tooth is one iteration of the peripheral nerve disorder that they have not made any inroads into in the last 40 years.

Doctors and the scientific community are very frustrated about Charcot-Marie-Tooth. In other neuromuscular or neurological diseases, they have been able to make significant inroads. With Charcot-Marie-Tooth they have made very little. So, it’s frustrating, not only for the science community, but for those of us who have to live with it.

Sturm: There’s someone on our team who has a very similar but even more rare condition, and your stories parallel exactly, same age when she started falling, dropped foot. And she was diagnosed for a while with the same condition, but it turned out it wasn’t. She finally got genome mapping to where they found the specific gene that was causing the issue, but it’s so rare that not much can be done. Where are you going right now for your—I’ll say treatment, but there is no treatment.

Emery: It’s very hard to diagnose this because it is genetic, and no one in my family had any symptoms of Charcot-Marie-Tooth. So, I had to get several nerve biopsies in order for them to diagnose it. Now neurobiopsies are not as traumatizing as they were 40 years ago when I had to get them done. I don’t really see anyone. I remember years ago I had to go up to the muscular dystrophy clinic for about 10 years. I said, “OK, I’m going to go over there.” And the doctor I saw said, “You know what we can tell you to do?” And I said, “Hey, dude, I was here 10 years ago and you said the exact same thing. It’s not helping me.” I have the severest form of Charcot-Marie-Tooth. I have a series of wonderful doctors who sort of treat the disease individually and collectively because they all talk together. They all come to my movies. They all see my work. It’s a team effort.

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by Karina U. Sturm

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