Ryan Weber: Welcome to Ten Minute Tech Comm. I’m Ryan Weber at the University of Alabama in Huntsville, and I’m pleased to present this episode as part of the Big Rhetorical Podcast Carnival 2022. The theme of this year’s carnival is Rhetoric: Spaces and Places Beyond the Academy. I’m very excited about my episode guest who fits with this theme because she’s a researcher who is also heavily involved in activism surrounding social justice and health disparities for Native American communities.
Dr. Emily Haozous: Hi, I’m Emily Haozous. I’m an enrolled member of the Fort Sill Apache tribe. I’m a nurse and a research scientist with the Pacific Institute for Research and Evaluation.
Weber: I invited Dr. Haozous on this episode to discuss her research and advocacy to improve both healthcare and health communication for American indigenous populations. As Dr. Houses discusses in the interview, the Indian Health Service in the United States is drastically underfunded and provides a completely different system of health care than one many other Americans are used to. This disparity makes health communication difficult, especially when many doctors and communicators function on a health literacy model that blames audiences for not understanding health information. Dr. Haozous instead advocates for a community engagement model and participatory approaches that foster a rich understanding of what different communities and cultures care about.
At the end of the interview, Dr. Houses also reminds nonindigenous listeners to learn and acknowledge the tribes whose lands they occupy. Alabama is the ancestral land of several tribes including the Cherokee, Chickasaw, Choctaw, Creek, Alabama-Coushattas, and Yuchis. In fact, the word Alabama likely comes from the Choctaw language and translates roughly as “plant cutters.” Many members of these tribes were forcefully evicted from their lands by the United States government on the Trail of Tears. The route of the Trail of Tears runs through modern day Huntsville, where the University of Alabama in Huntsville is located. As someone who currently occupies this land, I want to acknowledge the atrocities committed in this place and also the indigenous residents who continue to live here.
I want to thank Dr. Haozous for participating in this interview, and also Dr. Charles Woods, host of the Big Rhetorical Podcast, for inviting this show to participate in the 2022 Podcast Carnival. You can find more information about the Big Rhetorical Podcast and the Podcast Carnival at thebigrhetoricalpodcast.weebly.com. You can also find more information about Ten Minute Tech Comm on our new website, tenminutetechcom.com. That’s T-E-N minutetechcom. Comm .com, which features episodes and transcripts for many episodes. Now, I hope you enjoyed the interview with Dr. Haozous.
Weber: Welcome to the podcast, Emily. I’m so glad to have you here. I think this is going to be a really interesting conversation, and I picked you for the show because of your research and advocacy that focuses a lot on the health needs of Native Americans and Alaskan Natives. And I think the way to start is just by asking kind of how voices from this community have been marginalized in the past and then once we talk about that, maybe we can talk about some strategies to address that marginalization.
Haozous: Thanks for having me on. That’s an interesting question because when you say, how have they been marginalized, it makes it sound like the Native voices ever had a voice in the first place.
Weber: Sure, yeah.
Haozous: We never really have.
Haozous: But how have we been marginalized? Well, first, people talk about us in past tense and that’s a real problem because it makes us sound like we don’t exist. We do exist. We’re here. How have Native voice has been marginalized in terms of health care, which is what I really work closely on? One of the issues is that Native Americans have this healthcare system called the Indian Health Service, that’s treaty guaranteed health service. We essentially traded all of our land for healthcare, so we paid in advance. And it is a complex system of health care, and it’s completely independent of other healthcare systems. This also includes tribal health care systems, and it’s confusing and different. And if you don’t know anything about it, it’s completely mysterious. And so health care providers usually don’t know about Indian Health Service. So when you have a Native patient who comes in, the healthcare that they’ve experienced in their past, their whole life doesn’t really follow them. And so all the assumptions that you would make about health care for anybody else, you can’t make about a Native American patient.
Weber: Okay, so if I’m understanding you, there’s sort of like these two different healthcare systems that operate differently and they don’t talk to each other very well or translate one from the other. Am I understanding that right?
Haozous: It’s not just two different healthcare systems that don’t talk to each other, but it’s actually more like you have people whose lives are all about circles. So everything in the world is circles, and they’re all about circles. And then for some reason, they get bumped into a world full of squares. So the people who are in the world full of squares, they know all about squares: squares, squares, squares. So everything in their world is all about squares. And you have a circle person who comes in and they’re just like, what are these squares? They don’t have any frame of reference for squares. And likewise, the people in the square world don’t have any frame of reference for circles. And so it goes beyond not just not talking to each other, not just communicating, but it’s a complete culture shift. And so a healthcare provider is going to make assumptions about a patient when they come into their clinic. And one of those assumptions about the circle people is that they’ve had a lifetime of healthcare in a square world and they haven’t.
Weber: Right. So the square world is assuming that everyone has the same experience, and that’s not the case here. Can you give us some examples of kind of how those experiences might be different?
Haozous: So an example would be, I’ve been working on this project that is around Native American elders. And we went and we interviewed almost 100 Native American elders and talked to them about their health care and access to health care. And I looked at the interviews and noticed that in this group of 100 Native American elders, they all talked about how they never had the same healthcare provider their entire lives. So the longest that they would have a doctor was maybe three years. So if you think about, things are kind of rough right now in health care in general, but a lot of people grew up and they had the same doctor, their family doctor, and they saw them all the way from birth all the way to when they were 18. We try and do that. Or when you’re an adult, you like going to the same practice. But when you’re in the Indian Health Service, there’s this revolving door of healthcare providers. And so that’s what it’s like. So if you have a patient who comes in to see you and you’re in the square world, the patient is, they’re not going to trust you. They are expecting to have to tell you their whole life history, and then you’re not going to listen to them. They’re hoping that maybe you will pay attention and treat them for the problem that they’re there for. But chances are you won’t. They’re going to have to relive all the trauma that they’ve gone through because that’s what brings people to health care. And then at the end of the day, they’re going to leave expecting never to see you again.
Weber: Sounds like an incredibly frustrating healthcare experience. And I saw that project that you had done interviewing tribal elders. I thought that it was really interesting. What other kinds of things did these elders say about kind of their health priorities, concerns, frustrations that you found particularly notable?
Haozous: So priorities in indigenous communities are less about, oh, I want to make sure that I have access to care so that my diabetes is well managed. And priorities are more about protecting the health of our communities. So if you ask people, what are your health priorities, they will talk about “we want to make sure our community garden is healthy,” and it’s less about making sure that everybody has vegetables, and it’s more about making sure the Earth is cared for so that we will have vegetables long into the future. So protecting our elders as knowledge keepers is a priority for everybody, is a health priority, protecting our children and making sure that they have opportunities to learn their language and their traditions, those are all health priorities in our communities. That’s very different than what you would think somebody would respond when you ask them those questions.
Weber: So what you’re saying is, again, using your analogy in the square world, people might say, “Well, I want my cholesterol to be lower” or whatever. And in the circle world, it’s that we want to make sure that we take care of the gardens that are giving us food and that this knowledge gets passed down, that kind of thing. Yes. So it’s much more communally focused instead of kind of an individual focus on health, which seems like it’s one of the big, if I’m hearing you right, one of the big cultural differences in these health care systems that really make this crossover difficult. There was another project you did, kind of similar, if I understand you did a community listening project. Is this the same as the tribal elders? This is an evaluation project, correct?
Haozous: No, this is different. This is with the Notah Begay III Foundation, and this was with kids that started before the pandemic, and they hired me to work on their evaluation program for the kid’s fitness program. And they were thinking about how can we evaluate this better because they have an internal evaluation team. But then the pandemic happened, and all of our plans went out the window, and I couldn’t do these listening sessions with parents, and I couldn’t do listening sessions with kids because we couldn’t get together. So what started as one thing kind of evolved into this whole other really beautiful project where we were working closely over these regular Zoom calls to update and focus their evaluation processes and tools. We kind of use the NB Three Fit program as our place to where we can focus. Like, this is how you would evaluate this. And then we talked about Indigenous evaluation and how to make evaluation really community centered and focused on indigenous goals and values.
Weber: Fantastic. Yeah. So that kind of overlaps with what we were talking about earlier, is to evaluate something, you have to understand what people care about in the first place or you’re not going to evaluate it properly.
Weber: So is this an ongoing project?
Haozous: This is over now. At least my part of it is over. But when you think about evaluation, everybody complains about this in Indian Country because evaluation, you think like, well, it’s about numbers, right? It’s about, for kids, “Are we keeping their weight down? Are we making sure they’re eating from all the food groups? Are we doing all those very quantifiable things?” But in fact, that’s not what it was about at all. It was about making sure that kids and elders were involved and the kids were listening to the elders. It was much more community oriented. It was talking to the parents and finding out what they needed. So much different than what you would think.
Weber: So that’s a great point, because often we think of evaluation as what are these health metrics, but what you’re saying is that was not really the correct evaluation tool and instead was sort of questions about “Are elders and children communicating? Are parents engaged?” How do you evaluate that in kind of an indigenous-centered way.
Haozous: So we talked a lot about that because you can’t just look around and see if this is happening. It turns out if you talk to people and just basically get satisfaction and find out at the beginning they might not be very satisfied with how things are going, and at the end they can say, “Yeah, I feel really good about this program,” and then feeling really good about the program. You can very much translate that to them feeling really good about some of the changes that are happening.
Weber: Fantastic. And I’m guessing, correct me if I’m wrong, it’s not the “Are you a 4 out of 5 happy?” It’s more like an interview discussing in depth how do you feel about this program? I like that this is all kind of coming together. Another strand of your work is academic research, and can you talk a little bit about a few research findings that kind of contribute to your understanding of what the priorities are for Native American health care?
Haozous: I’m going to frame this around health communication. I’m starting to move in this direction around health communication because it’s kind of like this burr my side right now. It’s driving me crazy. There’s a slow transition happening where we’re trying to move the orientation with health interventions away from saying the problem is the patient. We want to start looking at the context, the bigger picture issues. And one of the things that’s driving me crazy is with health literacy. It’s really natural for people to assume that everybody thinks the same way. But I’ve already kind of described the squares and the circles. People don’t think the same way. We have a vast diversity of ways of thinking and ways of knowing. When we talk about health literacy, which for those who don’t know, health literacy is the ability to obtain and understand and use healthcare information. But it has that word literacy in it. And most people think health literacy is the same thing as reading, but it’s not. It’s about your ability to understand information. So I hate this term because it automatically makes people think it’s about reading. I think conceptually, when the health literacy enters the conversation, people just automatically become lazy and they start to blame the problem, whatever the problem is, on the patient or community. And they will say, “Oh, our intervention failed because they have low health literacy. The community was not able to understand because they can’t read or they have low education or whatever,” and they blame and blame and blame and blame, and they’re never responsible. In fact, we need to change that paradigm, stop talking about literacy altogether and start talking about communication in terms of how do we communicate with people? How are we communicating these things? Because the healthcare providers are the people who are doing it wrong. A patient comes into a clinical visit, and they are experts in themselves, they’re experts in their health and their body, and they are experts in lots of things that we don’t know about when we just meet them for that whatever five-minute visit. So we need to walk in and, just like we do with everybody, be humble, honor the knowledge that they’re carrying with them, and ask questions, and stop doing the revolving door of health care providers across the board and really honor this idea that every patient you meet is a human who needs respect and attention, and they are knowledgeable. Maybe their knowledge doesn’t jive with yours, but I’m not going to try and fix my car. I’m going to take it to a mechanic because he’s an expert in cars. And the mechanic isn’t going to try and understand oncology care, but he’s going to come to me when he has questions.
Weber: So the literacy model, it sounds like the problem is healthcare providers think, well, we made some brochures and sent them out, and nobody did what the brochure said. And then blaming sort of the audience, as opposed to, well, that wasn’t necessarily an effective way to communicate with that audience, or maybe the right information to communicate to the audience. Is that a fair expression of your point here?
Haozous: Oh, God. That’s exactly it. This is exactly what the problem is. And then they’ll say, well, we culturally tailored it. And often what culturally tailoring means to most people is they changed the color scheme, they changed the ethnicity or race of the people in the brochure, and they changed the literacy level of the text. But that’s not what culture is. That’s not the heart of a culture. The heart of a culture is about the way you view the world. And so if you really want to tailor materials, you have to look much deeper than that, and you have to talk to the people from the community and ask them, “What makes sense here? What doesn’t make sense? How do I communicate this in a way that your elders will understand it and it will be meaningful to them?”
Weber: So that there’s still not enough dialogue? Because in tech comm there’s a concept of localization, which is exactly what you’re talking about. Okay, well, let’s change the images, change the colors, change the vocabulary. If we’re sending this to Britain, we’re going to change the monetary currencies and everything, but you’re saying that’s not enough. Like you really need to rethink from the ground up these kinds of communications holistically so that it’s not just sort of a gloss on the same communication with different images. It’s totally rethinking how the communication should be done.
Haozous: Exactly. Because if it’s square’s doing square thinking, it’s always going to be squares doing square thinking, and the circles will never get there. They’ll never be able to be, it doesn’t matter. They could have PhDs and they’re still not going to be able to get it. And that has nothing to do with literacy.
Weber: You mentioned more engagement with the audience. What are some solutions to this problem? Because I love your identification of this communication problem. It’s a really big problem that sounds like you’ve been thinking about for a long time. What are some ways to really not just kind of superficially address this, but really get to the heart of making some changes?
Haozous: So we need more people of color, or however you want to refer to not-white people, doing the work. We need people like me in the academy and outside of the academy doing these projects. We need to recognize that it takes a lot of time, and it costs money to do these projects. I mean, I’m on year two of a project, culturally tailoring a sugar sweetened beverage project in upstate New York with a group of natives up there. And it takes a lot of time because you have to do a lot of back and forth and back and forth and talking and coming up with ideas and saying, “Is this okay? Is this offensive? Is this not offensive? How can I make it better?” That’s not something that you can just do. So there’s all of that that has to happen, and there has to be a lot, I think that the people who make whatever intervention in the first place have to be willing to let go and say, “Yeah, my intervention worked for my population. Now I want you to take it and make it magic for that population.”
Weber: Do you mind talking briefly about this project that you just mentioned that you’ve been working on for a couple of years?
Haozous: Sure. So I’m working with the Roswell Park Comprehensive Cancer Center. They’re really innovative in that they have a center for indigenous cancer research there, which is really unusual. And the director there is Dr. Rodney Herring, and he came up with this really great way of changing the sugar sweetened beverage intervention, where the goal is to get people to drink fewer sugar or sweetened beverages. We know sugar sweetened beverages are bad. Everybody knows that. But how do you convince people to actually not drink them? We found this intervention that had been tested and validated and shown to work in another population. So now he is very involved with lacrosse players in upstate New York, with Native American lacrosse players. And so we have spent forever working on adapting this sugar sweetened beverage intervention for athletes, lacrosse players who are indigenous in upstate New York. And one of the first things that we had to do was peel back everything from the original intervention and change it so that it met indigenous values. One of the things that we did was we really thought a lot about what is important for the people in this region? This core thinking that is really important up there is this idea of the good mind and maintaining a good mind. And so we oriented the entire intervention around the good mind, which is not at all what they did with the original intervention. Using that as the foundation, we then modified all the other pieces. The other thing that we did with this intervention that was very different from the first one, the original intervention tried to get people to stop drinking sugar sweetened beverages and told them, if you drink a Diet Coke, that’s okay. If you drink milk, that’s better. We did some focus groups and we talked to a lot of people and we identified that water, water is really where we need to go drinking traditional beverages, which are usually water based in some way, that is embracing traditional values. And so making those kinds of tweaks makes it much more resonant for the community up there.
Weber: This is a great example of what you’re talking about because it wasn’t the old empirically tested intervention with a new color and a new cover image. It was ground up, revising it to be about the good mind and having different objectives for a different very specific population.
Weber: Are you comfortable talking anymore about? So you do focus groups. Are there any other ways that you engage and work with the community to make sure the communication is effective?
Haozous: Before you even start a project, you ask people in the community, is this something that would be appropriate? Because if they don’t care about it, then it’s a non starter. I’m doing another project with another community around, making sure that they have advanced directives. So that’s talking about death. So we had to go to the community and say, “Is this something that you’d be willing to work on?” And yeah, overwhelming, “Yes. Let’s do that.” And so once you get that feedback, then you learn from people in the community, elders and clinicians, native clinicians, and people who are very close to the topic, what’s the best way to talk about this? And then you start to integrate all that stuff into what you have already, and you build it often from the ground up, or you take what’s out there and you pull it together and build it. I do a lot of research about the community that I’m working with to pull in all of that kind of signaling information, whether it’s colors or symbols or cultural cues, to make it feel more like home for the people who are engaging with it.
Weber: Yeah, and all those cues are good, but I like your point too: It goes deeper than that, you’ve got to make sure, do people care at all? You can change the colors all you want, and that does matter. But if nobody cares, if it doesn’t match values, it just doesn’t matter. Well, this has been really interesting. I really enjoyed talking with you, especially about kind of these concrete examples of the way that you address these very big looming problems that you’ve identified. Is there anything else you want to leave our audience with, what these problems are and how they might be addressed?
Haozous: So I have two things. The first is people often ask me, like, what can I do? Wherever you are, you’re standing or sitting or laying on indigenous land. So find out who is there, what people are there, and if you are unfortunate enough to be in a place where, there are some places in this country where people were totally removed, learn those stories so you can honor those people and find out what’s going on. If there’s an urban Indian center in your region, make a donation. We can always use funds for the urban Indian centers or the Native American centers if it’s not an urban center. And then the other thing is the Indian Health Service is just drastically underfunded when we look at the comparisons Medicaid and Medicare. Medicare got like $13,000 per capita in 2017. IHS got $4,000 per capita. So it’s ridiculous how the allocations are made. So learn about and then take time to educate your local policy makers so that they know that this is a priority. This message can’t just be made by native people. It has to be by everybody, or else we’re never going to see change.
Weber: Well, thank you so much. I appreciate the suggestions. I appreciate your work and the times that you took to talk with us about it today.
Haozous: Sure. Well, thank you.