Inside Schizophrenia: Impact of Schizophrenia in Minority Communities
Rates of psychosis are more strongly influenced by ethnicity and socioeconomic status than any other mental health condition. In this episode of Inside Schizophrenia host Rachel Star Withers, a diagnosed schizophrenic, and co-host Gabe Howard discuss the impact of schizophrenia in minority communities. Guest Sakinah “The Muslim Hippie” joins to share her experiences in mental health care.
Highlights of “Impact of Schizophrenia in Minority Communities
[01:00] The realization
[02:08] Sociology definition of the word minority
[04:30] The stats of mental health and minorities
[09:00] Diagnosing differences
[12:00] Is the medical community racially bias?
[14:00] Two people, same symptoms but different diagnosis
[15:40] The privilege of not having to worry
[16:30] Two people, same diagnosis but different treatment
[21:50] Guest Interview with Sakinah “The Muslim Hippie” Karen Michelle
[32:00] Police intervention in the minority mental health community
[39:35] What to do for someone who is suicidal
[51:00] So what is the answer?
About Our Guest
Sakinah “The Muslim Hippie” – Karen Michelle
Mental Health Advocate, Crisis Counselor, Speaker
Sakinah (Karen) Kaiser, also known as The Muslim Hippie lives in Baltimore, MD where she is currently a writer and mental health advocate. She hopes to go back to a school for a degree in social work with a concentration in substance use disorders.
Computer Generated Transcript of “Impact of Schizophrenia in Minority Communities” Episode
Editor’s Note: Please be mindful that this transcript has been computer generated and therefore may contain inaccuracies and grammar errors. Thank you.
Announcer: Welcome to Inside Schizophrenia, a look in to better understanding and living well with schizophrenia. Hosted by renowned advocate and influencer Rachel Star Withers and featuring Gabe Howard.
Sponsor: Listeners, could a change in your schizophrenia treatment plan make a difference? There are options out there you might not know about. Visit OnceMonthlyDifference.com to find out more about once monthly injections for adults with schizophrenia.
Rachel Star Withers: Welcome to Inside Schizophrenia, a Psych Central podcast. I’m Rachel Star Withers here with my co-host Gabe Howard. Today’s episode, we’re going to be discussing schizophrenia and how it relates to minorities and also the treatment that minorities receive.
Gabe Howard: I think this is a very timely episode because I really believed before all this started that everybody received the same level of care and that things like gender or race or nationality or religion really didn’t play a role in it. I just thought this was just basic science. So, I was surprised to learn during the research that, yeah, things like gender, race, nationality, religion play a huge role in the treatment options that are offered, that are available. It was stunning to learn.
Rachel Star Withers: And I think with me, when we’re looking at the idea of minorities, you always immediately think discrimination, but so much is things that might just be like these subtle biases that we don’t even realize that we’re doing, whether it’s other people or even to ourselves. In the U.S., whenever I hear minority, most of us usually think it has to do with race. But of course, we have religion differences, gender, sexual orientation, age, lifestyles. So, this episode, we’re going to be looking all across that and explore kind of how those differences affect other stuff around us.
Gabe Howard: Rachel, let’s establish some guidelines so we don’t get off track. So, this episode is called Schizophrenia and Minorities. What is the exact definition that we’re using for this show?
Rachel Star Withers: So, Gabe, I had to look it up because I wasn’t 100% sure. Like I said, I, in the U.S., here, we kind of just think race. But
Gabe Howard: That’s all we think.
Rachel Star Withers: Yeah. Yeah.
Gabe Howard: We don’t kind of think, that’s what we think 100% of the time.
Rachel Star Withers: According to sociology, a minority group refers to a category or people who experience relative disadvantage as compared to members of the dominant social group.
Gabe Howard: So, Rachel, in sociology terms, a minority is not just a few of something, but also it puts you in a disadvantaged class because of it. Now, wouldn’t somebody living with schizophrenia then fall under this definition?
Rachel Star Withers: Yes, and disabilities also can put you into a minority group. So, we’re talking about mental health. We’re talking about physical anything that sets you apart that might hinder you compared to everybody else.
Gabe Howard: And then even in this subset of people living with schizophrenia, there’s a minority group of people inside the minority group. This is where it gets complicated. The general principle that we’re trying to establish here is that, let’s just call it out, white people with schizophrenia often have better access and get better care than African-Americans with schizophrenia. It’s the exact same illness, even in some cases the exact same socioeconomic class. Different outcomes based on race.
Rachel Star Withers: Yes. And here in the U.S., that’s very correct. But you also look that across different countries, different areas, that changes depending on what the dominant race may be.
Gabe Howard: And the reason that we’re pushing this so far into the ground is because it’s not so easy to say that, oh, well, if you’re a minority and you have schizophrenia, people don’t care about you. It’s just racism. It’s not that simple. It’s these cultural and societal biases that we’re completely unaware of. And hopefully this show will shed some light on that because it really is unfair what is happening. And we’d like to think that in some small way Inside Schizophrenia can help maybe educate people on that. Let’s talk about what we found out, because we found out a lot of just straight up facts. This isn’t Rachel and Gabe’s opinion. We’re going to hit you with some straight up Internet knowledge.
Rachel Star Withers: And you’re also probably wondering why does all of this matter? OK. Rates of psychosis are more strongly influenced by ethnicity and socio-economic status than any other mental health conditions. So not just schizophrenia, psychosis, which can, of course, extend into other mental disorders. I found that very interesting. If you were to ask me, Rachel, what do you think your ethnicity and, you know, economically where you fall, what that would affect the most mental health? I would assume depression. That’s what I would assume. Like, well, if you’re poorer, you’re probably going to be more depressed. So, the fact that it’s tied to psychosis really is eye opening. It’s just not what I, at least, would expect.
Gabe Howard: Now, we found an interesting study while we did this because, again, we just don’t want our flapping gums, because let’s be honest here, a couple of white people talking about minority mental health has its own challenges and issues. We just happened to be the hosts. Later on in the episode, we’re going to talk to Karen who bills herself as the Muslim Hippie. She is a very cool mental health advocate, and she taught us all kinds of things. That’s coming up later in the episode. But back to the study and it was done in the United Kingdom. You know, I want to do a little aside here, the reason we’re using a study from the United Kingdom is because in America, we’re not actually doing a lot of studies on how these biases are impacting the minority community, and that’s very telling in and of itself. It sort of appears, from my perspective, that we don’t care.
Rachel Star Withers: I did find some studies and I was like, yes, finally. OK. And then I went to read through them and the words were very dated, for instance, describing race. And I was like, oh, and I’d have to like, oh, OK. I see. This was done in the 60’s. A lot has changed. But I immediately, like once I realized that, I’d have to start checking the dates and there are very few concrete studies, I would say, that have been done in the past few years, especially with minorities and schizophrenia. It was easier to find for like mental health in general. But definitely the schizophrenia community, almost, almost nothing.
Gabe Howard: Rachel, I think it’s important to remind our audience that there is no definitive test for schizophrenia. Schizophrenia is diagnosed observationally. A professional observes the patient and comes up with a diagnosis that way. And in the United States, black people are four times more likely to be diagnosed with schizophrenia than white people and Hispanic people more than three times. Now, that doesn’t sound right to me. Again, I am not a researcher. But schizophrenia doesn’t. It doesn’t discriminate against race or gender or religion. So, the fact that it’s four times and three times more likely to be diagnosed, shows me that there’s a flaw in the way that we diagnose. What did you find?
Rachel Star Withers: So in the U.K., they found that rates for psychotic disorders, again, not just schizophrenia, but psychosis in general, were five times higher in the minority group of people of black Caribbean heritage. Very, very specific. Black Caribbean, five times higher. That’s a lot. And I feel that if I were one those researchers, I’d be like, wow, there clearly is a genetic link. Right? But there’s actually no pattern found if you go to Caribbean countries that suggests this. So, it’s just found when the Caribbean black people there in the U.K. are a minority. That’s interesting, Gabe. It definitely makes you look at, you know, kind of that nature versus nurture situation.
Gabe Howard: Well, that’s certainly one possibility. Or it could be the trauma of living. There’s so many tangents that we could go off on here if we believed that there was no bias, that this is just the way that it was, then nature versus nurture could be an argument, like you said. But I don’t think that’s it. I don’t think that there is any nurture that causes schizophrenia. And the research holds up that you’re born with schizophrenia. So now we’re talking about diagnosis prevalence rates, not actual schizophrenia prevalence rates. And I think the disturbing thing is that there is a debate. Anybody listening to this should have grave concerns if they’re a member of the minority class. Are you feeling that you’re getting the best care when there’s all of this debate on how it’s diagnosed? It would be disturbing to me if I were an African-American living with schizophrenia. And I find out that it’s diagnosed four times more than in my white counterparts because I’m thinking that’s a lot of margin for error. Am I taking medications that I don’t need? Am I receiving treatments that I don’t need? Was I misdiagnosed? Now, Rachel, please, I imagine that it is very difficult living with schizophrenia, and I imagine that it would be even worse if there was a doubt. If there was an asterisk, if you were wondering to yourself, am I actually schizophrenic or am I a victim of a flawed system? I know that you’re a white woman, but what are your thoughts on that?
Rachel Star Withers: That can be really scary. You know, it takes so long to get a diagnosis and you kind of start to doubt yourself. It isn’t just America or the UK. They’ve done international studies and immigrant communities usually are assigned psychotic disorders way more frequently than the natives of that country who have the racial majority. This is like, OK, well, in America, it’s because they’re dealing with this. No, it’s across the world that if you’re different, they’re more willing to label you with a psychotic disorder.
Gabe Howard: Rachel, let’s do a little segue and talk about the individual patient doctor relationship. Let’s forget about all of the research, the bias and all of that. Let’s just talk about what many people with schizophrenia see for themselves, which is themselves sitting in front of a doctor. Do you think a lack of diversity among mental health professionals can lead to unequal health care?
Rachel Star Withers: Absolutely. For the most part, Gabe, I think me and you are very privileged. Most of the doctors I’ve been to have been white. So, all of the psychiatrists, specifically, have been white males. I’ve never walked in and thought, you know, I’ve never, I’ve never felt out of my element or, like, worried. That’s just, it hasn’t entered my mind. I’ve never looked at the person and thought, oh, you know, they don’t understand me. And that’s kind of interesting. And I was playing in my head being like, let’s say that I’ve never went to a white doctor. But let’s say they were always a different race than me. Would I second guess them? Would I be less willing to trust them almost if they were a different race?
Gabe Howard: It’s interesting because various studies have shown that people of color report more dissatisfaction with their care. And it was interesting when you were saying that all of your providers have been Caucasian, they’ve been white. I am shocked at this. And I didn’t even think about it before this very moment. One hundred percent of my doctors, mental health and physical health, have been white. And I don’t know how that has impacted my care. I don’t know how that has impacted my comfort level because they’ve always been white. A hundred percent of the time. It’s making me uncomfortable to think about. It’s stirring up feelings in me. And again, I’m a white male. Nobody should feel bad for me. But I’m thinking if I’m having this much trouble thinking about it in the abstract. This is a hypothetical. Gabe, how would you feel if all of your doctors were of a different race? And my brain is twisting. I can only imagine how it must feel if all of your doctors were of a different race in practice, not just in theory. But that then makes me ask, do you think that these are terrible psychiatrists, that just we’re intentionally providing bad care? By we I mean, the global we. Bad care to members of the minority class? I mean, is this deliberate? Are we filled with racism and hate? Like, it’s gotta be deeper than that. I don’t want to believe that the entire medical community is just filled with this. This. I don’t know. I just. Obviously, that makes me uncomfortable, too. I don’t want to believe that these are bad people because it does mean that Gabe and Rachel are getting care from bad people, too.
Rachel Star Withers: Of course, outright discrimination, that absolutely exists. But a lot of times it’s not that outright, it’s just more subtleness. And when you look at someone, you right away, you make all these kind of assumptions about them. When you hear someone, you make a lot of assumptions about them.
Gabe Howard: I’m always, of course, fascinated by people that say, well, I don’t see differences, I only see a fellow person in front of me and always think, well, if I went missing, what would you say? Would you say, oh, I’m looking for a tall white redhead? Well, but that means you noticed that I was tall, you noticed that I was white and you noticed that I had red hair. I mean, you certainly know how to identify me in a crowd. Like when you see me over there, you aren’t looking into a group of one hundred people and you’re like, well, I have no idea who is who. I don’t see anything. It’s just disingenuous to say that we don’t notice these things. And I’m wondering if all of this leads to creating criteria for diagnoses that while beneficial to the majority, are not beneficial to the minority.
Rachel Star Withers: Rutgers found that African-Americans with severe depression are actually more likely to be misdiagnosed with schizophrenia. So, you have two people who are coming in to the doctor saying the exact same thing. I’m having, let’s say, visual hallucinations. I’m having audio hallucinations, these different delusions. And they’re quicker to say the African-American person is a schizophrenic.
Gabe Howard: And you can see how devastating that could be, getting the incorrect diagnosis means that you’re getting the incorrect care. It means that you are not presented with options that are most beneficial to you. So therefore, you don’t have the opportunity to lead your best life. This is terrible. It’s terrible to consider. And speaking as a man who lives with bipolar disorder, I can only imagine that if in addition to managing bipolar disorder, which is devastatingly awful, I also had to wonder if I actually had bipolar disorder. Have you ever doubted your schizophrenia diagnosis, Rachel?
Rachel Star Withers: I haven’t doubted it in the past, you know, let’s say 10 years. In the very beginning, when I was first getting diagnosed, my early twenties? Yes. Mainly because the doctors kept, they were giving me different diagnoses. So, I was going, wait, which one of you should I believe? You know, one saying one thing, one saying another. However, I’ve never once thought it had to do anything with me. The psychologist was saying one thing. The psychiatrist was saying something else. I never said, oh, it’s probably because I’m a woman. That’s why this one thinks that. Oh, it might be because I’m white that one. That never occurred to me. I really just thought, you know, they’re different types of doctors. That’s why they maybe have different opinions. Never occurred to me that I in any way influence that. I was putting a lot of trust just in the doctors. And that goes back to what we’re saying earlier. That could very well be a privilege that I have, that it wouldn’t occur to me that I can’t trust this person.
Gabe Howard: I think it is an incredible privilege that you and I have. It’s wonderful not to have to wonder, because it just takes something off the table. There is a lot to manage with a severe and persistent mental illness. Schizophrenia is a scary illness. And also having to wonder if you are getting the best care based on the available research, based on your race or religion, socioeconomic status, etc. I just cannot imagine and I want to be very, very clear that there’s only so much understanding that Rachel and I can have, because it’s just not possible to walk a mile in these shoes. But one of the things that I’m wondering, Rachel, is we’ve talked about the bias in diagnosis. Now let’s pretend that it’s the correct diagnosis. Let get out of our mind that it might be incorrect. It’s 100% the right diagnosis. What about treatment? Are minorities with schizophrenia getting the best treatment?
Rachel Star Withers: And that’s what’s crazy. We go back to if we have two people walk in. Same symptoms walking into the same doctor. They found that all racial minorities. OK. So not just a specific race. All of them are less likely to be offered cognitive behavioral therapy than a white person. They’re more, it’s almost like they’re more willing, like, OK, like you have a lot of different options here. And then with minorities, let’s not give them as many options. And I don’t think it’s always, you know, an outright discriminatory thing. But, yeah, across the board, they’ve found that out. They’ve noticed that black patients are far less likely to be offered family therapy. I can see that definitely being a bias. Thinking the family’s less stronger in African-Americans, the family’s less stronger in Hispanics. Yeah. I easily see that being a bias with different doctors.
Gabe Howard: And that, of course, is, one, it’s just outright offensive. But let’s move that aside for a moment. I know that I would not be living as well as I am now if I didn’t have strong family support. And, Rachel, you’ve talked too. Your mom was on an episode of Inside Schizophrenia and talked about how much you two partner and work together to help you lead the best life possible. There is a tremendous amount of research that people living with schizophrenia do better if they have a strong support system. And listen, I always take this opportunity to point out that everybody does better.
Rachel Star Withers: Yes.
Gabe Howard: You don’t have to have a mental illness. No one is an island. So now this is being taken away from somebody based solely on the color of their skin. That, to me, is a tremendous loss.
Rachel Star Withers: Yes, and with Asian people, as far as being a minority, they are actually less likely to receive copies of care plans. Like isn’t that random? They’re less likely at the end of it to be given, OK, here is what we talked about today. This is our plan going forward. That’s worrisome because when I’m in the doctor’s, I have to take notes because the minute I walk out, I don’t remember anything. So, if me and that doctor are coming up with a care plan and then they don’t even like, let me walk away with it. You know, that’s odd to me. I’ve never had that situation. Like that would never occur to me that the doctors wouldn’t be wanting me to do this plan.
Gabe Howard: Rachel, along those same lines, what about the role of medication, is that at least the same for everybody in the treatment of schizophrenia?
Rachel Star Withers: No. Minorities have been found that they are prescribed typical antipsychotics over atypical antipsychotics. So, the typical ones tend to be the older ones. OK. The kinds we’ve been using since the 40’s. And if you’ve ever taken those type, like I have, the side effects are intense. They’re just so much worse than the newer drugs. Whenever you talk about movement disorders, that unfortunately are a side effect of many antipsychotics, the majority come from typical antipsychotics. So, if you have tremors, shaking that’s been brought on as a side effect, it’s going to be more of those older ones. So here we have minorities, they’re less likely to be offered therapy. They are less likely to be given a set plan and they’re more likely to be given medication without that support system. That can be very hard to deal with.
Gabe Howard: I’m really just speechless because, you know, I became a mental health advocate because I believe that people weren’t getting access to the care that they needed. And listen, this was largely from my own experience, seeing mostly middle-class white people. I thought that middle class white people weren’t getting the right care. And I still stand by that. And you’re saying that there is worse care based on gender, religion, the color of your skin. That’s just altogether frightening. In general, from what I’m seeing, from my perspective, from my eyes, from my vantage point, which I understand is only mine, I think that we need to do way, way better. And everything that we’re reading shows that it’s worse based on nothing more than who you are, where you were born or the color of your skin. And that’s, it’s a lot to take in, Rachel. It’s a lot to take in.
Rachel Star Withers: And we’ll be right back after this message from our sponsor.
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Rachel Star Withers: And we’re back to talking about schizophrenia in minorities.
Gabe Howard: Rachel, I think this is a good spot to introduce our guest, Sakinah, the Muslim Hippie, Karen Michelle. Clearly, we can only understand and process the world from our own vantage point, with our own eyes. The same with Sakinah. She is an incredible mental health advocate. She has done so much. And I’m so glad we had the opportunity to speak with her. So, go ahead and roll the interview.
Rachel Star Withers: So, we’re talking with our guest for this episode, Sakinah. And she’s also known as The Muslim Hippie.
Rachel Star Withers: So, tell us a little bit about your background.
Sakinah: So I grew up in the D.C. area. That actually is why I call myself a Muslim hippie. When I started with my journey with mental health slash mental illness, one of the first hospitals that I went to was in Takoma Park. And Takoma Park has a really eclectic history to it. And I like it because when I was growing up, I was really attached to some schools in that area. And I kind of felt like since I got better, or started getting better, there, I wanted to remind myself of what I liked about that part of D.C. and I like being a hippie. So, I just called myself a Muslim hippie and it just stuck. And then people were like, Oh, that’s cool. What do you mean by that? I know that people have a negative association with the name Karen. But my dad named me Karen. So that’s kind of why I also stick to my given name, because he really wanted me to have that name and he liked the meaning of it, which is pure. So, I go by Sakinah because that’s my Muslim name. But I stick with Karen, too. So that’s me in a nutshell.
Rachel Star Withers: And you are a mental health advocate, crisis counselor, speaker and a mentor.
Rachel Star Withers: Can you tell us a little bit about your mental health journey?
Sakinah: I did not intend to be a mental health advocate at all. I just dealt with mental health in one way or another since high school. And I kind of stumbled into all of this. And then when I started talking about my journey, I started blogging just because I like writing. And a few of my friends from elementary school, they read my stuff and they’re like, oh, you’re a really good writer. And a friend of mine, she’s a professional writer. She encouraged me to talk about what I was going through. And initially what I noticed was depression. So, I started talking about my depression issues. And then when I got online, which was mostly Twitter, I developed a following. And then it was kind of like I was healing and writing and like learning how to blog and do all that stuff all at the same time. So, then I learned about advocacy work. So, I used my journey online to kind of teach people about mental health. And as I was learning and healing, I decided, okay, why don’t I do this full time? So, then I started going to classes and things like that. And then I told people, OK. This is what I’m doing intentionally. So, let’s learn about mental health together. And then once I started going to the doctor and stuff, I actually told people, well, I didn’t know things and like maybe you don’t know either. And so that’s kind of how I got started. And there are so many mistakes that I made or that other people made. And rather than use my blogs to just say this didn’t work and hurt me, I used it to teach people about what I thought they should know about mental health.
Rachel Star Withers: So, our episode today is about minorities, and we were discussing that what a minority is, of course, changes depending on where you’re at.
Rachel Star Withers: And it can be, you know, a lot of different factors. A big one, though, however, usually is race. Can you tell us what race you are? Do you feel comfortable talking about that?
Sakinah: I’m actually African-American. My dad is black. My mom is black. They’re both American. My dad is from D.C. and my mom is from Georgia. The funny thing is people don’t know where I’m from because I cover with this scarf, this hijab, because I’m Muslim. So, when they see me, they assume actually, because I look racially ambiguous, they will assume that I am other, like Somali or Ethiopian or, you know, something. And my dad, they usually think he’s Egyptian or Moroccan. So, it’s hard for me when I identify. I’m kind of, I get stuck because when I was working in a hospital, I was a CNA for a while. And they would say things like, oh, you don’t have an accent. And it was hard for me to understand what they meant by that. Because I didn’t know if they meant I don’t have a D.C. accent? Or I don’t have a Maryland accent? Or if they meant I don’t have an American accent? I didn’t know what they meant. And then I realized they meant that I don’t have an accent for someone who they thought was Ethiopian or whatever. So, I’m African-American.
Rachel Star Withers: You should have said, well, my mother’s from Georgia, not me.
Rachel Star Withers: For like a Southern accent. And they’d be like, oh, okay.
Sakinah: Yes. And what’s funny is I’ll actually, yeah. Well, funny enough where I was working was in northeast D.C. and I ended up saying things like, no, my dad’s from, and then I would say the street where he was from. That’s how I found out, because they just kind of look like what? And then even when I take the scarf off, people will say things like, are you mixed Black and Spanish? Are you mixed Black and White? So, it’s still kind of a thing where people don’t know where I am. So that mixes the race and ethnicity. So, I’m like, I’m black African-American. You know, I try to get both in because let me explain and clarify. And I shouldn’t have to do that. When it comes to mental health and the conversations that we have, if I’m talking about being a Muslim with mental health issues, being a black person and African-American. It actually does matter because when I go to the hospital, it depends on how they look at me, how they’ll treat me. Like, if they think that I speak English but they don’t care that I’m black, they’ll be really nice. But if they think that I am a Muslim who doesn’t have a good handle on English, then they’re really rude. That’s something that I’ve had to do.
Rachel Star Withers: Very interesting. So, you can tell right away, like how they’re interpreting you?
Sakinah: Yeah. Because you can see, especially because my name. I have not changed my name legally. My name is Karen Kaiser. I mean, that’s easy. But also, no one is expecting someone black when they hear it. Karen Kaiser, because it doesn’t sound black at all. And then they see me and always, oh, OK. And sometimes they’ll say, how did you get that last name? And I used to be like really rude. I’d say, slavery and then like
Rachel Star Withers: Oh.
Sakinah: Somebody said please don’t say slavery, but. You know, that isn’t a nice thing to say. But I don’t know what people want me to say because I don’t really know my whole lineage yet.
Rachel Star Withers: And they’re implying something else also.
Sakinah: Well, exactly. Exactly. And the thing is, though, when I go to the hospital or to the doctor, it depends on if the doctor is black or African-American. It depends on their background and how educated they are. And if they have a prejudice, how they’re going to treat me. So what I’ve noticed is sometimes I prefer to use my name, Karen Kaiser. I don’t want to deal with, oh, where are you from? And I had doctors that I grew up with, they knew me. But then when I put my scarf on, they didn’t recognize me and they were really mean to me. And then they’re like, wait
Rachel Star Withers: Oh.
Sakinah: A minute, we recognize this name. We just didn’t. And they did. We didn’t notice that something. Oh, so you’re saying that you’re going to be prejudiced against this until you know who I am. Sometimes you can see it right away and sometimes they won’t say anything. But it’s in how they will. And one time I went to the hospital and I was really very sick. I almost died. And I asked someone for Sprite and she, on purpose, brought me back apple juice because she thought that I wouldn’t understand the difference. And there is a black guy there who is also attending to my care. And he said, you heard her ask for such and such. Why did you do that? So, it’ll be little things like that. I don’t know how to tell the person you’re doing this because you think that I’m from someplace else. And by that time, it won’t matter if I take my scarf off. And then when I go to inpatient, it’s the same thing. So, I can hear things that people will say and they’re thinking, I don’t hear because I have the scarf on. So actually, when I was in Dallas, I had been able to explain it to them. Because I was in the hospital and they were doing things like making me take my scarf.
Sakinah: They would say that I can’t wear a scarf in the room because I’m going to harm myself with the scarf. And then they have bedsheets in there. So, there are things that like they will have cultural hang ups that they don’t realize. And I don’t know how to explain it to them easily. So that’s one thing that I’d like to work on with my advocacy is being able to clearly share with people how I can see their prejudices. And I’m not that eloquent sometimes in my speech, because if I’m unwell, if I’m in psychosis, I don’t have time to educate you. One time I was at a hospital and they said, well, there’s our patient line, you can tell us what we’re doing wrong and I shouldn’t have to do that when I’m not feeling well. So, it’s something that I want to work on when I’m like now when I’m passionate but not feeling hurt or upset, because I think that in the long run, it helps people to see how they can better help someone like me.
Rachel Star Withers: As far as, we’re talking about on the small scale of things right away, people seeing you. What about the larger scale as far as like diagnoses? How do you feel race or religion might have played a difference?
Sakinah: Well, so what I have noticed, this is just a small bit of research that I’ve done. What I noticed and what I’ve heard is that African-Americans, so we tend to be more easily diagnosed with bipolar and schizophrenia and definitely more psychotic disorders, whether that’s that or not. So, let’s say that you see me in a trauma setting. So, you might just put a label of bipolar or schizophrenia, and that might not be what it is. That’s easier because you just assume all of us, if I’m loud and I’m yelling and I’m assuming they think that is what the data supports, that it’s easier to put us with that label. Just how they would say, like with young black boys, they’ll get the label of ADHD. When it comes to psychotic disorders, black people will get the label of a psychotic disorder, and without getting much research. A lot of diagnoses are missed because we just get one thing slapped on us and then nothing else is looked into. And I think that is really so sad because we could get help. And also, there is a rush to overmedicate. Even if it is a psychotic disorder, I might be on a really high dosage or something when I could be on a lower dose just because it’s almost like criminalization of symptoms. Whereas someone else may just do with a lower dose because they’re not looking at her as a criminal. So that’s on a larger scale where it just is with African-Americans. It’s more of just you have that psychotic label and then we’re just going to medicate. Almost like a prison type thing within the medication.
Rachel Star Withers: Just asking, because this is obviously in the news a lot and it is a major issue and problem is African-American people specifically, but people of color being I don’t want to say harassed, but unfortunately, yeah, harassed in a lot of like legal situations, kind of police tend to jump where they’ll stand and might talk to a white person who’s, like waving a gun for hours and talk them down,
Sakinah: Yes. Yeah.
Rachel Star Withers: And they’ll tend to see a black person doing something like lighting a cigarette, thinking it’s a gun and overreacting. Mental health wise, how does that make you feel? You know, you’ve talked about being inpatient some. Are you scared to get help sometimes? That maybe things could escalate?
Sakinah: Now, that’s an interesting topic and how that plays out is it depends on your presentation, gender and how you look. Because as a Muslim, let’s say I’m five one and I’m light skinned. I might be Muslim and I am African-American and I cover. But if I’m not seen as a threat, well then no, I’m not scared. But then they won’t help me because they don’t see me as someone that they need to pay attention to. So, they’re not interested in getting me the help that I need. And since I’m not a criminal, they don’t want to pay me any attention. So let’s say that someone calls the police because I’m exhibiting psychotic symptoms. They usually will say, OK, she’s African-American, she’s dangerous. But then if they come out and I’m not dangerous, then they just walk away. So, they don’t give me any help. Do you see what I mean? So it is that criminalization of African Americans with any type of psychiatric symptoms. It’s automatically we have to harm this person. Then if they aren’t a danger to us, then we’re not going to help them. In order for me to get impatient, I have to take myself. Because when it comes to someone calling for me, nobody wants to deal with me because it’s almost like they’re like, OK, there, there. You know, we’re not dealing with you. Now, if it were my son, who is a darker skinned male who is bigger, yeah, I’d be afraid for him because the minute they see him, they’re thinking, is he a threat? OK, we’ll shoot him. So we talk about the privilege of being light skinned. If you have pretty privilege, that kind of thing, because certain people, they’re not looking for you. So they’re not going to do anything.
Rachel Star Withers: Now, as you just mentioned, you’re also a mother of teenagers.
Sakinah: Yes, two teenagers and a 20 year old.
Rachel Star Withers: What do you tell them? Do you warn your kids as far about, hey, when you go to the doctor, you might want to be careful about this? Do you ever worry?
Sakinah: I do, but I’m careful how I warn them because I don’t want to put in them this idea. This inferiority complex, like, OK, you do this so you don’t get hurt because then that raises someone with this idea that it’s OK for me to victim blame. At the same time, I don’t give them the idea that they can do whatever they want. It’s this tightrope, this walk that I have to do that. OK. And when it comes to psychiatric symptoms, if you need help, you have to know how to reach out. And then it’s a difficult thing. But I want them to know how to talk to me. I just have to let them know how to advocate for themselves. And I think that’s the best way to do it. But I do let them know they can look at my social media pages if they need to understand mental health and if they need to ask for help. I really try not to let me enter into it because I want young people to look at the adults in their lives to know how to get help. And that’s kind of the way that I’m steering my advocacy work.
Rachel Star Withers: Earlier in the episode, me and Gabe, we discussed that we’re both white and I have never been in a situation where I did not feel comfortable due to my race as far as like a medical setting. I’ve never thought when the doctor came in, they’re going to treat me differently. I’ve never worried about that. The nurse practitioners and other ones have been more diverse. But like the psychiatrists that I’ve seen, the vast of the doctors have all been white males, with the exception of two, and I’ve seen a lot. So that exception is under five percent. You know, at the end of the day, I can’t understand. What would you tell other people like me and Gabe?
Sakinah: Well, what I would say is that. See someone like me has also had a bit of a privileged experience when it comes to clinicians. So, I had to have that explained to me. And I didn’t know that because I grew up in the DMV area that which is the D.C., Maryland, Virginia area. I have had, I’d say about 98% really good experiences because those doctors are so well, not just well educated. These are the specialists of the specialists. So all of the really good hospitals, there are such good hospitals. And I’m not in a rural area. So if I had bad experiences, I can name them on one hand. And even if my friends had bad experiences, we are the anomaly. What I would say is for African-Americans, each person’s experience is going to be different. And then it’s going to depend on their life circumstances. Unfortunately, it depends on appearance. It depends on how well educated they are about their situation. And it also depends on money.
Rachel Star Withers: Yes.
Sakinah: For me, every single time I went to get diagnosed, it all lined up to what I have today, which is so rare. I’ve never had a different diagnosis. With all the times I’ve been to different hospitals, that’s unusual. Usually people say, oh, well, first they thought this and they never thought something different. And they hadn’t. They had no reason to say that. So I think I had one doctor who did something that was so unusual that it was racially based. It was abusive. But I can be mad at that one doctor. It might have been as bad as I should’ve sued the hospital. But again, I would say that as a patient who’s African-American. Like, I can’t even speak for all African-American patients, you know, with mental illness
Sakinah: Because my situation would be different, too, because of being Muslim. After 9/11, the difference is a lot of Muslims have trouble with trusting mental health professionals because some people are afraid of things like surveillance or afraid of stigma. And I never thought of that because my mom raised me to be so open with I’m going to the doctor that I didn’t think about it until people had told me, like, you’re so clueless. And so that’s, again, a privilege that I didn’t have bad experiences. And what I would tell to you guys is Gabe was probably the first advocate who came to me and said, OK, I don’t know about what you do and your experience. So how do I learn? I’m going to be honest, that’s unusual to me. You guys have been so open with me. And that was really helpful. If I talk about race and I talk about ignorance it is because some people, they just never were open. And what I like about when I meet advocates like you is that you asked me to tell you about my experience. So that helps me to see how I can teach you. So, I think that if each person shares their experience with one another, then we all can learn.
Rachel Star Withers: Oh, I like that. What the world needs more of is people willing to learn.
Sakinah: Yeah, yeah, I think so.
Rachel Star Withers: As you know, with mental health, depression and suicide comes up a lot. A few years ago, I’d given a response, we’re talking about as far as suicide. Pretty much, my rule is if your friend or loved one or whoever is talking about suicide, don’t treat it as a joke. If you think they’re going to hurt themselves or others, you need to call the police. And I had a lot of backlash because a lot of people said because you’re white, you think that means they’re going to get help. And yeah, unfortunately, a lot of times if the person isn’t white, they’re not going to get help. It’s going to be a very different response. And I know there is no correct answer. There is no. Well, this is what.
Rachel Star Withers: What advice, though, would you give me as far as dealing with those situations?
Sakinah: What I would say is a lot of areas now are starting to adopt warm lines. And like, I won’t say, a crisis text line. But there is a difference between the 911 number and a crisis line. But things like, in my area, they have either 211 or 311, which is the county services. And if you call them, which is a non-emergency number, they should have a mobile crisis. Now the problem with mobile crisis is that sometimes they will send the police. So unfortunately, in that sense, there’s nothing you can do. But I think by state, I think people are having these numbers for mobile crisis. Or you can ask for an ambulance when you call the cops. You can say maybe it’s not an emergency or when you call crisis text line. I also take crisis text line calls. What we can do on crisis text line is you can call on behalf of someone else and say, I think this person might need help and they can call someone for them. It doesn’t have to be the police. So, one of the things I want people to think about is if it is a person of color, African-American or somebody else, find somebody different to call besides the police. And if you’re not sure who, then you can look it up, because for whatever reason, there’s just such a stigma against us when it comes to law enforcement or they don’t know how to de-escalate. I’ve seen and retweeted videos of white Americans, they can walk at the police with all kinds of machetes and everything, and the police will just stand there like, oh, it’s OK. And then me, I can have nothing, and like, I’m like, I’m compliant, I’m on the ground and they’ll shoot us. And I don’t know why that is. Rather than figure that out, I would try to help by just call a different number. But I think until you get African-Americans to deal positively with law enforcement and share our experiences and teach, I don’t think that it will change that we’re getting hurt.
Rachel Star Withers: And something you said earlier. So Gabe’s a pretty big, big guy. You’ve met him in real life. He’s like six something, huge towering guy.
Rachel Star Withers: And let’s say there’s a situation and I feel that, yeah, he needs help. I wouldn’t think twice about calling the police. It would never occur to me that, like, oh, they’ll make it worse. And he’s huge.
Rachel Star Withers: So, you should think that, hey, if anyone. Yeah, I would be worried that they might shoot him because he’s such a big dude, but that never entered my mind.
Rachel Star Withers: But that’s almost like that privilege that people don’t realize. I wouldn’t have thought about race having any effect.
Rachel Star Withers: Yeah.
Sakinah: And the thing with privilege, regardless of the scenario, you almost don’t realize it until someone lets you know where you have it. One time I was tweeting about something, about maybe going to the E.R. or why would you wait to get a doctor? And whatever I tweeted about, someone said, you know, you think that because you have privilege. You know where I am, even if you’re in crisis, if you call the doctor, they won’t see you for about a month. And I said, oh. And they were letting me know that your privilege is such that. Like, if I call my doctor, they’ll call me right back. Sometimes I have my doctor’s cell phone number. So I was sorta like, oh, I can just go to the E.R. right then and get evaluated by a psychiatric social worker so they’ll let me know if I need to go to inpatient. Like, why would you wait? And a couple things I said. And they’re like, you are in the D.C. area. Of course you have. And I was talking about like I just go and I just did this. And you don’t even understand how much privilege you have. We can’t go even in an emergency. And then I said, oh, OK, I get it. And I think we all have privilege. Even if you don’t realize this. So, sometimes someone has to tell you, oh, you didn’t realize. That was easy for you. That’s why you think that. So, yes, the same type of thing. And I think even for me, the way that my stature is with if you see cops, most of them, it’s obvious they are bigger than me and they have more like they have authority over me.
Sakinah: But when someone calls for me, there are six of them. Six of them came out and I’m just sitting there and they keep saying like, well, that your friend said that you were suicidal. And I said, I’m not. I just asked them out of it and like, OK, you can leave. But her son, they talked to him in such a way, it was obvious they wanted to harm him, you know, and they’re making fun of him and like, have you taken your medicine? And they weren’t really trying to de-escalate the situation. They didn’t do any of that to me. So, the way that they treat people like us is so different. And they weren’t interested in getting him out. They were just trying to, like, let her know that she had messed up by not giving him his meds. So that’s the kind of thing where if you don’t see that happen, you won’t really know. That’s how they deal with it. There were actually only three of them, and there were six for me. You know, there’s no need to. Like, they’re trying to strong arm us and let us know. None of that makes any sense.
Rachel Star Withers: And that goes whether you’re in a city or rural area, like how many? Obviously, you always hear where not everyone’s bad, which is correct. But when you look at like, the responses. Yeah. If you’re in an area that the police have more of a budget, they’ll probably send more. And it could probably escalate quicker than if you’re from where I’m from. And I don’t know, like five cops for like half of South Carolina. You know, the idea that a whole bunch coming out wouldn’t happen and be like, well, where are you going to find them? But yeah, usually, like, things change.
Sakinah: See, I didn’t even think of that. Yeah.
Rachel Star Withers: Mm hmm.
Sakinah: Yeah, because for me, I’m like, why are these six cops in a room? And like, they’re all like just trying to stand in front of a window where if I fell out, I’m not even going to die. And then I’m like, what are you even doing? It was really, really odd. And then I kept telling them, look why are you all around the windows? We don’t want you to jump out. Of this window? Yes. None of that makes sense. OK. Yeah. Then they had an actual budget. And then finally they’re like, all right, let’s just go, we’re wasting our time. I told you that. Yes.
Rachel Star Withers: So we’ve hit on a lot of different things, and I’ve loved talking with you. What overall advice do you have for people whenever they’re in a minority situation dealing with mental health, whether it’s a crisis or just worried about getting general help?
Sakinah: Ok, I’ll say two things. If you are a minority and you are concerned about your mental health, don’t be afraid to ask. What you don’t know, that is what can hurt you. And it is not a shame on you to say, hey, I’m dealing with this issue. And you won’t know what it is wrong with you unless you ask a professional. You cannot assume. Everything isn’t depression. Everything isn’t anxiety. You need to know and you deserve to feel well. And I have a friend who always told me that. So you should check into it. You should reach out. But especially if you are black or African-American, you need to take care of yourself because you need, you have to be strong in today’s society. But if you’re dealing with someone who’s black or African-American, same thing. Don’t assume that they know what’s going on with them and don’t look at them and think, oh, that person’s angry all the time. Or that person is whatever. They may be dealing with trauma and they don’t know how to get help. So, if you say something, let’s say online, you say, oh, reach out or take care of your mental health. They won’t know how to do that unless they’ve been taught. So, don’t assume that like one size fits all. Or if you’re an advocate or even a doctor, that they’ll know how to do that. And then you might be thinking, well, I said it. They won’t know. And so for us, you really almost are going to have to go into those communities and teach people and just be kind of patient because some people have such a stigma. Like in black communities, we have such a stigma. And you may need someone who looks like them or who they will take that information from. So, it’s OK if he will kind of push back. They’re not pushing back against you. They’re just a little bit scared sometimes. Just like no assumptions. No assumptions.
Rachel Star Withers: And how can our audience learn more about you?
Sakinah: The best way to learn about me, I would say, is through my social media, Twitter and Facebook is where I’m most active. My Twitter handle is @TheMuslimHippie. You can find me on Facebook /Sakinah.Karen. And both of those have all information on any other projects that I’m working on. You’ll find those. I’m working on the second book about substance use disorders. I want to write a book about Muslims dealing with substance use and how being in a marginalized community, if you don’t take care of your substance use disorder, you can die quicker. That’s kind of what that project is, but it’s going to be positive. And it’s a story of hope because I’m always looking forward. So, Twitter and Facebook is where you can find me.
Rachel Star Withers: Thank you so much for coming on here and teaching us and our audience. And I kind of hope we will all just continue to learn from each other.
Sakinah: Thank you for having me.
Rachel Star Withers: Thank you so much. Loved speaking with you today.
Gabe Howard: Rachel, that was incredible. I’m so glad that we have the opportunity to interview people on this podcast, not just Sakinah, but all of our guests have just been so incredible. What do you think?
Rachel Star Withers: I learned so much from her. Especially when we talk about, like religious wear. For the most part, when I walk into a doctor’s office, they’re not going to know what religion I am. It’s pretty hard to judge me off that, whereas they know right away with her, you know, and you make assumptions off that, whether you mean to or not.
Gabe Howard: One of the major takeaways that I learned from Sakinah was it’s not intentional. I think this is just such an important point to bring up. This debate is always tabled with you are a malicious racist or you’re perfectly fine. There’s like willful racism or nothing to improve upon. And the reality is, it’s so much more complex than that. I’m not saying that there’s not willful racists. There absolutely are. I don’t think Sakinah is denying that either. Her point was that some of the major issues that people of color, that minorities, have aren’t that willful racism. It’s the unexplored biases. It’s the misunderstandings that go unchecked that lead to people like her not getting the best care. That was a real aha moment for me because it would just be so much cleaner if it was, oh, you’re a racist and you’re evil. Oh, you’re not a racist and you’re wonderful. Like that would be so much easier, but it’s not that way. So, I’m really glad that she pointed that out and I can see where that would be very impactful on her care.
Rachel Star Withers: And sometimes you don’t have access, you know, where you’re living at. So how I dress, let’s say I walk in and the doctor, I’ll go, you know, a week without showering because I’m so depressed and I’m, like, mentally out of it. So imagine if I show up to a very first doctor’s appointment and they’re thinking, oh, wow, this girl looks rough. They make these assumptions that, oh, she probably has no support care system. Oh, wow. We need to, you know, up her meds right away. People look at you and they make assumptions based on the way you dress. There’s so many things that can affect our health care. And it, it’s scary, Gabe. I’m not gonna lie. It’s scary, especially for people with schizophrenia. And there is no like, OK, well, here’s the answer, guys. Like there isn’t. We have no answer for how do you deal with subtle biases? Because unfortunately, every single thing is going to be different and so much of it people don’t even realize they’re doing.
Gabe Howard: Our listeners probably aren’t aware of this, but Rachel is a stuntwoman and she’s also a model and quite accomplished at both. And I am just, I am lucky to have Rachel as a friend. And I bought a new wardrobe recently that Rachel helped me with. So, one, I just wanted to publicly thank you, because now I look stellar.
Rachel Star Withers: True.
Gabe Howard: But people are like, Gabe, you’re really stepping up your game. And I said, yeah, I have a friend who’s a model, Rachel, and she gave me all kinds of hints and tips because this is her experience. And that’s like, oh, that’s awesome. I wish I had a model friend. And the reason I’m telling this story is because recently one of my friends realized that my schizophrenic friend Rachel and my model friend Rachel were the same person. It never occurred to her that my model friend Rachel could live with schizophrenia. She very much considered them separate. Now, my friend is a very good person. She’s a very nice person. She’s not, she doesn’t have a mean bone in her body. This was not malicious, but she was unable to connect the two and she was quite surprised when she found out. That, in my mind, is an excellent example of just an internal bias that you miss. And obviously, the stakes aren’t very high on that. Health care is a matter of life and death. And that’s why we’ve got to do better.
Rachel Star Withers: Absolutely. This episode is a very hard one for me to kind of wrap up. I’m very upbeat. You’ve noticed that, I’m sure, throughout the episodes. So, I always want to leave on an upbeat note. And this is hard because as we’ve said multiple times, me and Gabe, in a lot of ways are very privileged. And we’ve never been outright discriminated against. We’ve never kind of been held back from health care due to being a minority. And I don’t wanna give upbeat words for something that I know nothing about. During this episode, we’ve talked about all different stats and acknowledged that so much goes into the way people perceive us and we perceive other people, how we subconsciously even connect to people. How you’re like, oh, hey, this person’s like me and the opposite there and that’s across the board. That’s something that’s scary to me, that there are people out there and they almost never feel like they connect with a doctor. And I do wish I could be like, oh, well just go find another one. As Sakinah pointed out, especially when you’re not in a city, there may only be one doctor. Depending on your financial status, you might not be able to go to anybody else. You might have to stick with a free clinic or something like that. So, there are no good answers that blanket everything. We all have blind spots. Some of them are self-imposed. Others are put on us. I think we all just kind of have to realize that we have these blind spots and try to do better.
Gabe Howard: Rachel, I could not agree more.
Rachel Star Withers: Thank you so much for listening to this episode of Inside Schizophrenia, a Psych Central podcast. Please, like, share, subscribe. Send it to all of your friends, any of your friends who are dealing with schizophrenia, caretakers, your medical friends, or just some really cool people you know.
Gabe Howard: See you all next time.
Announcer: Inside Schizophrenia is presented by PsychCentral.com, America’s largest and longest operating independent mental health website. Your host, Rachel Star Withers, can be found online at RachelStarLive.com. Co-host Gabe Howard can be found online at gabehoward.com. For questions, or to provide feedback, please e-mail [email protected]. The official website for Inside Schizophrenia is PsychCentral.com/IS. Thank you for listening, and please, share widely.