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Aphasia Access ConversationsAuthor: Aphasia Access
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Episode 125. “It was like being put in a damn box”: Healthcare experiences of Black Americans in conversation with Dr. Warren Brown
Tuesday, 25 March, 2025
Welcome to the Aphasia Access Conversations Podcast. I'm Jerry Hoepner. I'm a professor at the University of Wisconsin – Eau Claire and co-facilitator of the Chippewa Valley Aphasia Camp, Blugold Brain Injury Group, Mayo Brain Injury Group, Young Person’s Brain Injury Group, and Thursday Night Poets. I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that will feature my friend and colleague, Dr. Warren Brown. I’ve been fortunate to work with Dr. Brown for the past two years and I’m excited to share the work he’s been doing in service of the LPAA. Warren C. Brown, Ph.D., CCC-SLP is an Assistant Professor in the Department of Communicative Disorders at Jackson State University. His research explores the intersections of traumatic brain injury (TBI), aphasia, and healthcare disparities, with a focus on cultural and linguistic diversity in clinical care. He serves as a facilitator for the Black Aphasia Group at the Aphasia Center of Acadiana and has published on topics related to brain injury, intersectionality, and patient-provider communication. Dr. Brown is an active member of the American Speech-Language and Hearing Association (ASHA), National Black Association for speech Language Pathology (NBASLH), the Academy of Neurogenic Communication Disorders and Sciences (ANCDS), and Alpha Phi Alpha Fraternity Inc. Take Aways: Learn about health disparities faced by Black Americans. Learn about the perceptions of Black Americans towards their healthcare providers. Dr. Brown will continue to facilitate the Black Aphasia Group affiliated with the Aphasia Center of Acadiana. Dr. Brown and his team to are hoping to publish an anthology project featuring entries from Black Americans with aphasia by fall of next year. Dr. Brown plans to organize a symposium on aphasia at Jackson State University with a focus on diversity. Dr. Brown plans to present a poster on the anthology project at the upcoming Aphasia Access Conference. Interview Transcript: Jerry Hoepner: Alright. Well, Warren, it's good to see you today. I'm fortunate to see you on a regular basis. So, I think this is the second time we've connected today. For different reasons. But I'm glad to have you here as a part of the Aphasia Access Conversations Podcast. I'm hoping you can share a little bit about yourself. I know that some aphasia access affiliates will know you and know a little bit about your work. But I'd like others to get to know you and your work as well, so can you share a little bit about yourself? Warren Brown: Yes, sir. Well, thanks for having me. For sure, this is an honor. I'm a recent graduate from the University of Louisiana and Lafayette. With my PhD. I studied under multiple folks. There. I studied under Anthony Salvatore, Dr. Judith Oxley, and Dr. Jamie Azios. My main areas of interest are traumatic brain injury, aphasia, and all neurogenic disorders related to marginalized populations. Prior to my doc program, I was a practicing clinician for 11 years or so I practiced in mainly acute care hospitals long term, acute care, hospitals, home health, and predominantly in Southern Louisiana. So, and I did a little bit of private practice. I did everything but child language disorders. So I prided myself when I started my doc program as being a clinician first, and thinking about clinical issues, first, because I was gracious enough to get a lot of great experience in my timeframe, so I kind of had a better idea about, you know the areas that I was most mostly interested in prior to going into my doc program. So, I'm married. I have 3 kids Wes, Evie, and Wells, which is my newborn and a lovely wife, Tatiana. I'm a new faculty member at Jackson State University in Jackson, Mississippi, and I love my job, and I love my students, and I love my research endeavors that I've done thus far. So, you know I'm fortunate enough to work with you, Dr. Hepner, Dr. Louise Keegan, Dr. Jamie Azios Dr. Judith Oxley. Still Dr. Anthony Salvatory. Still Theresa Gray, a few other folks. I'm just happy that Dr. Brandy Newkirk-Turner as well at Jackson State. I'm happy that I have a great group of mentors to ask questions to and bother from time to time. So, I'm just grateful. So yes, sir. Jerry Hoepner: Well, yeah, it's been really fun working with you and getting to know you. And certainly, that really strong, diverse group of mentors is something to build upon for sure. That's a great group of people. So privileged to be a part of that a couple of things that we were going to talk about today. I want to get to your work with the black Americans with aphasia group, and I want to get to some of the new work that you've been doing on an anthology. I'll kind of leave it at that, for now you were gracious enough to share a manuscript. That you and Dr. Azios have under review right now. I know it's not quite published, but I'm wondering if you're willing to give us just a little bit of a preview of that work, and I have a few things that I just think were really powerful from reading that manuscript, and I'm interested in your thoughts on it. So, do you want to tell us a little bit about, like the general context of that manuscript? Warren Brown: Yes, sir, so this was. This was actually a part of my dissertation. My dissertation was a mixed methods. Research project on healthcare encounters of African Americans with aphasia and without aphasia. But I was lucky enough to capture 8 interviews from a qualitative standpoint for that dissertation from African Americans with aphasia from across the United States. Different age ranges different levels of severity and obviously different etiologies from which caused them to acquire aphasia. The paper really came about, because, again, clinically, you know, I always realized that individuals who had aphasia who were black, had a lot of different experiences when it came to healthcare providers and practitioners. And oftentimes, when I would go into a home or see them in a hospital, they would be surprised that I was the individual to see them right. They would think I was a dietary staff member. They would think I was DNA. They would think I was a nurse, everything but a speech pathologist. So, when I had the opportunity to lead or facilitate a group which was the California the conversational group with Dr. Teresa Gray. You know I love to hear the different experiences that those individuals were having, as well coinciding with what I knew what was going on in the field. So that's what spawned this idea about understanding the dynamics of what you know. These encounters were from a deeper perspective. So originally it was going to be just a regular project with Dr. Azios and I, but we felt it'd be better if we made it a larger scale project and added to a portion of my dissertation. So, we did so. We really look to understand those lived experiences of those individuals, how those healthcare encounters went for them before and after they acquired aphasia, and trying to understand, like different strategies and challenges, that you know they may have had to use to overcome some of those issues, and how, you know we could take what they were saying, and make that accessible to practicing clinicians to understand how to work with diverse populations a bit more you know. Yes, sir, so. Jerry Hoepner: Yeah, I mean, I found a couple of points that well, actually, several within the background. And literature review that really struck me. There's several of these statistics, but a couple that really stood out to me were the percent of deaths among black Americans during the Covid pandemic. And just you know the marked difference between the amount of actual African Americans in those communities and the numbers that died. Which were that was just really striking to me. And then the other one. The other context that you wrote about was the study of 85 black Americans. That were a part of a VA. Study, a veterans affairs study and really just talked about their, you know, their feelings of being stereotyped by the professionals that we're dealing with them, treated and labeled as if they were uneducated, and addicts and angry and poor, and those really set the context for the study. Wondering if you can just kind of weigh in on those and other kinds of striking background pieces of information. Warren Brown: Yes, sir, so you know, it's known that you know there is racial bias when it comes to African Americans in general, just because of how society is. But you know oftentimes in neurogenic disorders it's unstudied, right? You don't look at race and ethnicity as factors as being contributing factors to some of the issues that the populations that we service are dealing with, you know, looking at Covid alone. You know, we added, that I added that statistic because you know it just kind of highlighted how much racial disparities really are prevalent right and not just individuals with aphasia, but individuals who have a multitude of you call it metabolic issues, right or just issues in general when it comes to healthcare, and how sometimes these issues go unserviced or underserviced, or these individuals are not educated about what they need to do or what they need to accomplish, from a healthcare practitioner which ultimately leads to poorer outcomes across that population. You know. One of the things that we listed in that paper was also about just black women in general, right? Black women are twice as likely to have low birth weights of infants when compared to white women, and they also face lower rates of prenatal care right? Although that doesn't have much to do with aphasia. I think that that speaks to a larger picture than that. Jerry Hoepner: Yeah. Warren Brown: You know. Sometimes African Americans are looked down upon the most across our society. And why? That is, you know, it's a multitude of reasons, right? There is no one pinpointed answer for that, and it just kind of paints to the goes to the bigger picture of racial bias, and how patient and provider communication is just poor across the board, and you know, and it could be because of communication styles are different, right? It could be because of the practitioners. You know the old mindset was that the practitioner is always right, so they should. You know the patient should listen to what they're saying, and it's not. It wasn't necessarily a patient center or person-centered approach like it is nowadays. And some practitioners, especially in the South. They still are under that mind, right? Not necessarily in the South, probably across the board in the United States. Right? So, I think that you know those biases, and some of that lack of communication or poor communication it just contributes to the poor perceptions and stereotypes that are out there in African Americans and black people you know, because regardless. When a black person gets sick, you know, they may be scared to go and talk to a practitioner because of where they live. That might be the only practitioner or specialist that they can see, and they are a family member, or a friend might have had a bad experience. Therefore, they're hesitant to go to that person, and they'll just deal with the issue themselves. And that's where you know. I think a lot of the differences are when it comes to African Americans and healthcare providers. And I've seen that as well with individuals who have acquired language disorders. Right? I've had patients particularly. Tell me when I was practicing that. You know, Warren, we want you to come back, but we don't want the other girl to come back, right? Because you're listening to what I'm saying. You actually are educating us about what's going on more so than just what the language issue is right. And I think that points to the picture of just them feeling comfortable with me, because I'm most of the time with the same ethnicity, right? Same race. And I'm genuine, right? I do the same with any patient that I encounter. But obviously, sometimes, when it's African Americans, and I know what the assumption is, and I understand some of those experiences are, you know I try to go a little bit more. I try to. I try to go the extra mile for them. So, this. Jerry Hoepner: And I think there's it's interesting. And throughout the paper there's parallels to some of the work that you and I and Dr. Keegan have done on healthcare perceptions in traumatic brain injury. That you know you mentioned that idea of providers still following it, falling into that provider centered care rather than person centered care. And I think that's a problem across the board for some providers, because that's evident in our research. But we don't have you know, we're not even representing the black Americans within that group. And I know that the problem is more pervasive when it comes to services for black Americans and other colored people as well. You know the one number that really struck me from the study in Chicago, 70% of. Warren Brown: 70%. Jerry Hoepner: From Covid. Warren Brown: Yeah. Jerry Hoepner: Were black Americans in Chicago, and only 30% of their populations or population was black Americans. That's just. You can't help but be startled by those kind of disparities, because clearly there's something. Warren Brown: Up in there. Jerry Hoepner: Something that. Warren Brown: And these are these are fairly new studies. Right? I mean, the stat for Louisiana was 70 70.5% of this, and they only represent 33% of the State's population. Right? We're African American people. So that. That's you know. My personally, my dad didn't leave his house for a year and a half during Covid he would not go to church. He didn't leave right, and he was terrified. Terrified. You know. I know he had at least 4 or 5 people that died that he knew. You know. So, I mean, it's daunting right especially if you're not educated, or you're not understanding. I had a great relationship with a practitioner that could educate you on, you know the do's and the don'ts of what you should or shouldn't be doing so. Yes, sir. Jerry Hoepner: Yeah, absolutely. I kind of broke down the article into 3, like major areas of interest and topics. And I'll just kind of lay out the 1st one being those challenges with healthcare providers. I couldn't help but put down. This one quote was like being put in a damn box, and we had a little conversation about that earlier, but We also talked about this like this lack of knowledge about stroke and that healthcare literacy creating this fear like. And you even mentioned that with your dad, right? This fear that I don't even want to go into that healthcare context. But then this like laundry list of things that we hear in a lot of studies about healthcare perceptions, healthcare providers are dismissive, dismissive, and you feel vulnerable in that context, you don't have control or agency. Those kinds of things that we don't hear in in those other studies about healthcare perceptions are things like. There was a clear. There was a clear prejudice against me. Right? There was this neglect by providers. One lady I had to write this down, wrote. I don't talk to my dog like that, you know, like. Warren Brown: That's right. Jerry Hoepner: So. Warren Brown: That's right. Jerry Hoepner: And then, you know, just a lack of inclusion in decisions in in the whole entire process. And just feeling that sense of people looking down on you, and that you know that this is kind of the expectation. So I'm really interested to get your thoughts about. You know that that issue of those challenges in terms of working with healthcare providers. How many of those are communication based? And what's kind of bias and kind of sorting some of that out, because we know some happens a little bit to everyone in that context. But certainly, this is different. Warren Brown: Yeah, I think that you know we all have personal biases that, you know are inherently that we are. You know that we're introduced to that from an environmental standpoint. But you know, one would assume that when you become a healthcare practitioner provider, you know you have to be open-minded because, you understand, you're going to be dealing with so many different types of people from all walks of life. And unfortunately you know, these disparities still are there, and this particular study showed that they're still there, right one of the examples you just gave about the young lady that said, you know I wouldn't let my dog talk to me like that right? I remember in in her Transcript she also stated that you know, in multiple visits that she went to her physician would talk through her or over her, where she just totally felt dismissed, or one interaction she had. She had a friend who was white that brought her to the doctor, and they felt as if the friend was the patient, and she was the patient caregiver right? And I think that really broke her down. She literally stayed out of therapy or avoided therapy for a long time because of that. And obviously that affected her outcomes right. But I think the bigger picture is that it's a little bit of both, Dr. Hoepner. I think it's a lot of bias, and it's also poor communication. You know, I think, and some of that's not on the physicians themselves. Some of them, I'm sure, are compassionate. I think some of that is on the larger system systemic issues that are out there. Right? You know you have. They have insurance deadlines; they have time frames. They have. Probably some of them are overwhelmed with patient care in general. But I still think that you know to be truly compassionate, you know you need to understand what you're getting into as a practitioner, and still with individuals that you know may not understand some of the dynamics of some of the diseases or illnesses that they have. You have to find a way to provide them services that they need. Right? I think the communication is key, because it always goes back to communication. Right individuals who are educated, which a lot of these folks are. Some of these folks in the study. I had PhD. Some of them were medical doctors, right? Some of them have master's degrees. A lot of them still stated that their health literacy was poor when it came to symptomology, of strokes, symptomology of not just strokes, but them acquiring aphasia what that truly meant, and how that might affect their daily lives. Right. One of the individuals she stated that she didn't realize that you know aphasia was a thing until she had it. She didn't realize that she was having multiple strokes right until it happened, and she just felt like she would bounce back and go back to her daily life and be fine and go about her normal business. But you know it's hard to pinpoint exactly how to fix it. But this study is, I guess, one step towards trying to understand the different dynamics from multiple perspectives. And I think what makes it super unique is this qualitative study is really, really, it's very in depth. That's why it's so long right? It's a long paper. But we felt it necessary to put these quotes in, because these individuals, these interviews long and you can't help but be compassionate and understand each individual's perspective on what their experiences were right. You know, because this dynamic, this really changed their lives. And I know aphasia changed the lives of a lot of different people and caregivers right. Anytime you have a failure or even a brain injury. Right? It changes we know that. But I think compounded with the racial and ethnic tension or societal views that these individuals suffered with prior to having those injuries. This acquiring aphasia only makes whatever was going on a bit worse, because the inability to communicate or even comprehend what's going on around you, right being overstimulated, not necessarily being able to do on your own, or do for yourself, especially with a practitioner on something that's unknown to you is again. That's a daunting thing like you really don't know what to do, and if you feel dismissed, or if you feel as if a practitioner is talking down to you, what would make you, as an individual, want to go back? You know the a good example, I can say, is customer service right? If you go to a restaurant and you receive poor customer service from a from a waitress, will you give them a tip probably, maybe, or you might give them a less amount of tip that you would have gave given to a person who gave you better customer service right? This is a good example of what a physician interaction and communication is with a patient right. Sometimes these individuals just won't go back right or might not go back to any practitioner one of the individuals in the interviews. He literally said that you know he had a few poor encounters, so he switches doctors regularly because a lot of them don't understand him and won't try to understand him. So, you know, it's problematic. It's definitely problematic. Jerry Hoepner: And you hit the customer service thing right on the head, because one of the things that I was struck by, and I've done work kind of parallel to this. And brain injury is that relationship and the importance of starting to build an authentic relationship in terms of mitigating some of the other communication problems, right? Like, if you invest a little bit in like getting to know that human being. You start to humanize them, and you start to, you know, want to have good outcomes for them, and that results in in better care. And it comes right down to that. That patient centered versus provider centered communication. Right? If you open up the door on the front end to investing a little bit in a relationship building, it seems like the goodness follows right like you're saying earlier, like, these physicians aren't bad people right? It's just, you know, they're in a system that says, Go, go. And then they have these biases that they might not even be aware of. And the next thing you know, they're out, you know, on the way out the door, and care hasn't happened in the way that it should. But I'm just struck by the fact that that was like a mitigating factor for people like just a little investment get to know that person. And then everything changes so. Warren Brown: That's right. I think I think that's what you know. Someone asked me a while back. Why, like our Black aphasia group. Why is it so successful? Right? It's because it's not if I don't. The way that I approached it. I didn't approach it as me, Warren brown as an SLP. Right? I approached it, me, Warren Brown is trying to understand these people's stories and get to know them, and fully. How can I, as an SLP, help you right? And I think that's why our group is so successful, right? And why people keep coming back. Because if they didn't feel like it was a genuine interaction, I can assure you they wouldn't come back. Because I genuinely look forward to the group like the group members do, because I love talking to these folks. These are folks of my family, right? And that's the type of community that you know. Practitioners can make it like that right? Jerry Hoepner: Okay. Warren Brown: You know, in certain rehabs. That's what it is. It's a familiar environment. At certain places. I know some of the ones that I used to work at. So, you know, but I definitely understand the dynamics of health care have changed right as time has progressed, and that's due to a multitude of reasons. But care doesn't have to change. Right practitioners can change for the better. If you fully try to understand and invest time and energy and being genuine into the folks that you're seeing right. I truly believe that so. Jerry Hoepner: Agreed, you know, and when I kind of listed a bunch of priorities, or what black people with aphasia want this? Isn't it an outlandish list by any means like, I've got this big, long list of things that are problems. And then they say they just want to be treated with dignity, compassion, and respect. They want. Warren Brown: Right. Jerry Hoepner: Heard, and they want to be treated like human beings. That's not unreasonable. So, it's not like they've got this big, long list of you got to do this. This I just think that's pretty interesting in light of all of the struggles that they're facing like. If you could give us these 4 or 5 things we could. We could work with. Warren Brown: Yes, sir, and I. And I think even with that the you know, interpretation of respect is different from everyone. But I think ultimately, no matter what race, no matter what ethnicity, what creed you are. Respect is respect, you know, treating people the way you want to be treated right. I mean, that's what it is. And you know, talking to people the way that you want to be spoken to. Right? That's what it is. And I think, like you said, it's so simplistic it should be natural. But obviously it's not for some people right? Jerry Hoepner: Okay. Warren Brown: And that's and that's problematic. But hopefully, it's hopefully, we're trying to change that. So you know. Jerry Hoepner: Yep. yeah. Finding a way to make those priorities on the front end. I think that really makes sense. The other thing I wanted to talk to you about kind of get your take on. This is along with the challenges and along with kind of these desires. What people with aphasia want? I just noticed a lot of strengths that I'm not seeing in some of the other research that's out there from the perspective of survivors of brain injury and so forth. Things that I just saw flowing through like this idea of self-reliance like I learned, I gotta rely on myself, I rely on my faith and my religious beliefs. And then this really struck me, this, this cultural community, where one of the one of the participants said something to the extent of, We always stay in each in each other's business, kind of like, whether we want it or not, whether they want it or not, and that allows them to help each other. I’d just like to get your thoughts on that, because that seems like such a strength of this community. Warren Brown: Yes, sir, that's a that's a loaded question, but I can definitely break it down. So, I love that question, though I think that you know, from perspective of self-reliance. That's definitely a cultural thing, right? Because, you know, personally, I'm 38. So, I was raised to not be dependent on someone else, because you really can't depend on what someone else can do for you outside of what you can do for yourself. That is something that is instilled at a young age and I went to Southern for my master's right Southern university in Baton Rouge, which is a historically black college or whatnot. And you know, at Southern they taught us the same thing, because, you know, as you know, our field is predominantly white women, right? Less than 5% African Americans, even less percent African American men. And at Southern they always said, You have to work twice as hard in order to be in this field and be successful. And they instilled that in us so much right. Because you really have to understand that you know society has painted this picture that things are against you and these individuals, with aphasia in their own careers, have had this same type of battle and everything that they've gone through. So, they've always had to prevail. And some of these individuals in this group. They went through the Jim Crow South right they went through struggles of individuals, fully talking down to them, having separate everything, having to deal with parents and grandparents that, you know, had to bow down to certain people because of the societal norms at the time, so that self-reliance, you know, always was there, because they always had to work harder in order to achieve what even was fair or normal for other people right? And that paints it to a bigger picture, even goes back to the level of respect. Right? If you work twice if you feel like you working harder than someone else for a job. And you know you're more qualified. Right? That's something that that you feel you're owed. But to some black people you understand that I'm not old. Anything right? That's just how society paints it. It is what it is, and I think that goes back to that point. And I'm sorry. What was the other question? I was trying to. Jerry Hoepner: So, I think just that that cultural community. Warren Brown: The cultural. Yes, sir. Jerry Hoepner: Others, business and. Warren Brown: So that kind of touched on it, like I think from a cultural standpoint, you know I am my brother's keeper. Right. You may or may not know this, but I'm in a I'm in a predominantly African American fraternity. Right? We're the oldest fraternity, and that's something that we learned right. You. You never go anyplace by yourself. You always have your brother with you. I always have you know I am my brother's keeper, and that goes from, you know, not just African American males, but African American females, and vice versa, because that sense of community, you know. Again, we talked about it earlier with the Speech acts is unspoken, things that we understand inherently, that as an African American or a black person, you're going to endure in life, and you have to just suck it up and swallow your pride and deal with it. But we all are going through that struggle right, and I think some demographic groups can relate to that. But obviously some groups can't as much right. It's harder to you can empathize. But you may not fully understand, just because the dynamics are different, right? And I'm not saying that all black people have that experience. I'm not saying that. But I'm saying that a lot of black people feel like that. And that was inherent in the interviews as well. Because this group, you know, they, we talk about community. We talk about personal experiences and regardless. If some of them had a PhD., a MD a Ms., a BA right behind their names. All of them had the same experiences. Right? I have to highlight one of the folks in the group. He went to Harvard. He was the second African American person to graduate with a PhD. From the State of Mississippi. Right, you could. I could only imagine. And he did this in the seventies. I could only imagine the struggle that he had to go through right to attain a degree like that from a school like that coming from where he came from. So you know something that you know other people's family members may have done, you know, is probably much more meaningful to him because of the struggle he had to go through, and I think that is where the community comes in because African Americans acknowledge that right? I was always told. Like, you know, school is important. Education is important, you know, education to get you a lot further in life than sports and all these other things, because, you know, it was always instilled that in education, you know, knowledge is power and you know these older folks. I call them older folks. No offense, right? No ageism here. But you know the 70 plus right. Those individuals who have doctorates and really are fully educated. Their battle and struggle was much harder than mine coming through school right? And I. And that's a level of respect, a level of community that we all know how to respect. And I think you know, when it comes to community, that's something that we all can recognize as a culture. And with this particular group, that's something that's respected across the board because, regardless of the level of severity of aphasia, they have every individual in that group respects one another. They check on one another. They listen to stories about one another. They know about each other's family right? Milestones. It's phenomenal, right. When I got my doctorate. They were the 1st people to congratulate me right. When someone had another struggle in the group. We were the 1st to say a prayer for them and why? That is cultural. It's a traditional thing. I mean, it probably ties back to slavery before the great migration, right? And folks moved up and all around from the south to different parts of the North. Right? That's something that is always probably going to be there. And that's a cultural thing that you know, is really unspoken a lot of times. So. Jerry Hoepner: Yeah. You know, you talked about the people in the study, the people with PhDs and master's degrees and physicians. One of the stories I kind of connected with was Ann Story. She was a physician prior to her stroke, and had acknowledged that she had colleagues that she would refer black Americans to, and colleagues she wouldn't and then she had the stroke, and she had this very personal, insider experience. I don't know if you want to just say a couple of things about that. Warren Brown: Yes, sir, she actually, I'm glad you said that she actually definitely said that she referred people to certain practitioners because she knew certain physicians with had more empathy than others. Right now, her experience was a little bit different, right? She didn't really have any negative experiences with practitioners, but also all of them knew she was a medical doctor, right? And I think that you know that level of information is different, because had they not known who knows what her story would have been right as opposed to the individual with the PhD. They didn't know he had a PhD. Because at the time of his stroke he couldn't talk, so it wasn't until his wife came and alerted them as to who he was and where he worked, that some of that stuff shifted, and obviously it shifted when he went to different facilities as well. But Ann's experience was very, very different than some of the other individuals, but I think that even with that she was much more conscious about her experiences as well, because she kind of had a better anticipation about what she was supposed to receive and how services were supposed to go for her right. And that goes back to the bigger picture of healthcare literacy right? Obviously, her literacy and understanding of how healthcare works was a bit better because she was a medical doctor, and I think even just. Her journey with aphasia was a bit better in a lot of different ways as well. Yes, sir. Jerry Hoepner: Yeah, that's really important to have that that perspective and that kind of juxtaposition. Well, I do want to make sure we have some time to talk a little bit about your role in running the Black aphasia group, and how that's changed your clinical perspective, your research perspectives kind of what you've learned in that. In that context. Warren Brown: Absolutely so. Originally, I was gung ho! About brain injury. Only, right? I didn't really necessarily want to go into aphasia as much as I am, because my premise for going to get the PhD. Or really one of the main reasons why was I wanted to study sports, related concussions mostly. But once I got into the program and I learned about some of the different, the different profs, some of their interests, you know. I couldn't help myself, but dip into it some, and I got an opportunity at the last Aphasia conference to meet Teresa Gray and she allowed me to facilitate her group out in California, and then we started our own group through the aphasia center of Acadiana with Dr. Azios and Miss Rose Shelf. So, you know, I still run that group. It's still affiliated with the aphasia center of Acadiana. Although I'm in Jackson State. I asked Dr. Azios if we could continue to do that because I think that that connection to an aphasia center is integral. Because I think that you know with the group, that's what we're known for. And that's what we're going to stay as long as they'll have me. So. You know, with that group I've learned so much more than what I knew before, as far as compassion, as far as empathy. As far as, although you might be the expert or the practitioner, you still need to understand the dynamics of the individuals that you're seeing just hearing some of their stories, and even personally, as a practitioner, some of the things that I used to do right, which were probably wrong, because that's how I was trained originally in the beginning, you know, and I shifted throughout my career as well, because I understood a lot more, but I think even more so now, I really fully understand. And that's kind of what I teach a lot of the students that I have right how to understand the dynamics of people that you're working with and the students at Jackson State. They have an opportunity now where they actually come on with the group, and I allow them to have somewhat of a conversational type of discourse with the members, so they can understand those dynamics, for whenever they get out in the field to understand how to work with diverse people with aphasia. So, one of the things that you know, we were able to start with the group members. And this was all the group members. They wanted to create an anthology, right? Because they stated that they wanted to document right their journeys and journeys for other people who are African Americans or of color to understand. You know what you may or may not go through right that you are not alone, that you aren't in a damn box by yourself. Right? They wanted to understand that also for caregivers what to do, because all of these individuals literally stated, they all were oblivious to aphasia prior to this, prior to acquiring it. So this anthology is serving, as you know, just a guide or tool to use for individuals and for other individuals with aphasia who may or may not be of color to relate with right and for individuals to understand like, Hey, you know, this is what I went through. You know I am black with aphasia. This is also to get other people who are black with aphasia in their caregivers to understand that. Hey? We have a group for us out there that you may or may not want to be a part of and last week we actually added a new member. So that was wonderful. But so far, we have multiple different entries. The group participants have entered essays. They've entered poetry. Some have done checklists, some have done prayers some have even one. We have one from a caregiver. Her husband has aphasia. She comes to the group as well. We love her. She's actually a compound pharmacist. She wrote about her perspective as a caregiver in the anthology as well. So. Jerry Hoepner: Cool. Warren Brown: Me. Being in Jackson state. I got lucky enough to talk with Dr. Brandon Newkirk Turner, and Dr. Morris is that the University of Saint Augustine. They connected me with Dr. Mcdaniels, who's over the Humanity Society in Mississippi, and she's gonna help us to get it out there. So. Jerry Hoepner: Awesome. Warren Brown: And recently we started a collaboration with one of the art, the Black art History professors at Jackson State, Dr. Brittany, Meinberg. We're actually going to make it aphasia friendly. So, whereas we're gonna have mirrored pictures of the entries and the pictures of those entries from an abstract standpoint for individuals who have aphasia so they can read it and be aphasia friendly as well. So yes, sir, that's the idea, and hopefully we'll have something by the fall of next year. So. Jerry Hoepner: Because. Warren Brown: At JSU, we're going to be doing a symposium on aphasia. And obviously, since it's an HBCU we're gonna have some focus on diversity with that as well. So yes, sir. Jerry Hoepner: Well, I'm excited to see that anthology come to fruition and look forward to kind of keeping an eye out for that and everyone out there who's listening. Keep an eye out for that as well. Just a handful. 2 or 3 more questions I want to ask. Just find out a little bit more about your experience. I know that you've had opportunities to work alongside of some great researchers and clinicians. I want to get your perspectives on that. And yeah, share a little bit about that, and how that's prepared you to be like a brand new professor this year. So. Warren Brown: Yes, yes, sir, absolutely you know. I can honestly say it's truly been a blessing since I started at UL, and I'm done now to be able to encounter all the folks that I have. You know, from Dr. Salvatore to Dr. Michael Canito to you. Right, Dr. Hoepner to Dr. Louise Keegan, Dr. Azios, Oxley Ryan, Nelson. You know the list goes on right. Everybody that I've worked with and spoken to all have different perspectives of our research, you know, and I and I take pieces from everyone that I've worked with to understand how I want to approach things right, because my love is always going to be diversity right in whatever area that I'm in. And you know, I think that's what makes me a little bit unique, right? Because my perspective is always looking at the population that I mainly care the most about right. And you know understanding the different dynamics about how you all have what you all have done. And from reading, all of you guys work, I call it borderline stalking. You guys work right? I remember the 1st time I met you, Dr. Hoepner, I was terrified to talk to you, man I really was, and then, when you introduce yourself to me, I was quiet, and I was like, he's normal. He's not like, I thought he was. So, I was like, Okay, this, this is cool. So, and Dr. Jamie said, just go talk to him. He's cool. Go talk to him. I was like Okay, but I use it as an example, because, you know we're all human, and I think that you know sometimes, you know, as a new researcher, as a novice researcher, as a student, you know, you get overwhelmed with the people that you're reading about, the books that you're using or books that you're reading. These are the folks that are writing it. And hopefully, one day you can get to that level to impact students like myself, like I was, or students that are out there, up and coming students. So, you know, I think, that all the work that everyone is that I've learned under and still learning under, you know, it's important, because this is all. This is all, how we all are contributing to the field and how we're making the field better. Right? I think that's the ultimate goal ultimately is to serve the population of individuals that we're treating. It's never about me, right? It's never about you. It's never about any of this is about the work that we're doing to improve outcomes, to improve the populations that we serve. And you know, clinically, I've worked with some phenomenal clinicians. When I was a clinic, when I was a clinician when I was a full-time clinician and you know I've had great clinicians that I've worked under and with, and horrible at the same time. I think we all have, and you know, when I was in administration I would fire and hire people left and right. I would let people know if they were horrible, and I would just go on and keep moving. But I think you know now that I've shifted to research and understanding how clinicians think to a certain degree. You know, I can understand why some clinicians practice the way they do or did, because they were ignorant to what's out there, you know. Earlier on in my career I was oblivious to aphasia. I heard nothing about it. I work in acute care hospitals, major acute hospitals because they weren't that popular in the South, right? It wasn't really until I got to Southern, and I taught undergrad for a while. And you know in some of the text that I was reading. I read about it, and I was like, Oh, I never knew that was a thing right, because they weren't offered. We had Parkinson's groups. But we never had aphasia group, right? And I think that you know, and TBI groups that we have that as well. But I think these groups are much more impactful because they do serve as a sense of community for a multitude of people. And these groups are places where individuals can go when they plateau out of therapy. And I want to say something on that, too. That's actually one of the topics we wrote about in the anthology. What does it feel like to be plateaued or told you plateaued in therapy? Right? And it's just amazing how you know as a clinician, you say that to someone right? Or you meet, you met Max level of potential. You say that to someone, but you don't fully understand the mental or the impact that you have on an individual when you say that right? And that was something we talked about. And now they're writing about it. And I'm like man. I never thought about that as a clinician. So I say that to say even I'm still learning right. That's something we should know. But you don't think about it from a clinical standpoint, because that's a standardized thing. But to an individual who's suffering from or had to endure what you're saying to them, it's a totally different perspective. Right? So, you know, I'm learning that. And I'm learning how to be more compassionate, too. So yes, sir, I'm learning a lot. I love it. I love it so. Jerry Hoepner: We are well on your way, and you will make that impact on a lot of students. I'm sure you already have. Well, just to kind of bring things to a close. I want to end with a lighter note hopefully, a lighter note. What brings you peace in the midst of this sometimes crazy world that we're living in. Warren Brown: Oh, man, I love! I love my kids and my wife. I love my kids and my wife. They bring me peace. I'm a I’m a classic car collector. I love my classics, too. I have them. Can I share about that? Jerry Hoepner: Absolutely. Warren Brown: So, I have a 1969, a 396 Chevelle that I bought years ago. And we're restoring that we're almost done with that. I just have to get it painted. And recently I bought a 1985 K. 5 Chevy Blazer that we started to restore as well. It's a smaller engine. It's a 305, but that's something that brings me peace as well. You know my dad was a jack of all trades. So, I learned at a young age how to construct houses, how to do plumbing electrical fix cars. That's why I went to college, so I didn't want to do that full time. So, but one thing about it is that you know, I learned how to do all those things, so I can teach that to my kids. And hopefully, that's our family time. You know that we do these things together. That's what truly brings me peace, my family, and a lot of my friends. So, for sure. Yes, sir. Jerry Hoepner: Well, that's fantastic. And obviously you and I could talk all day. We need to wrap things up. Hopefully. We'll get to see you at the Aphasia Access Leadership Summit and connect there. Warren Brown: I'll be there. Yes, sir. 01:05:02.260 --> 01:05:11.929 Jerry Hoepner: Connect with a whole bunch of new people. That you haven't met yet, too. So, thank you so much. Warren and I look forward to talking to you again soon. Warren Brown: Thanks, Dr. Hoepner. Thanks for having me. I appreciate it. Jerry Hoepner: You're so welcome. On behalf of Aphasia Access, thank you for listening to this episode of the Aphasia Access Conversations Podcast. For more information on Aphasia Access and to access our growing library of materials go to www.aphasiaaccess.org. If you have an idea for a future podcast series or topic, email us at info@aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access.
