Focus on BIPOC Mental Health Challenges and Outreach - guest, Sabah Muhammad (Ep. 35)

 Focus on BIPOC Mental Health Challenges and Outreach - guest, Sabah Muhammad, DJ Jaffe Advocate

Sabah has a brother with mental illness, and is an advocate for him, and more: she  is legislative and policy counsel with Treatment Advocacy Center (see episode 31).

SMI is challenging enough, but what does racial inequality add to the picture? Sabah references one of her favorite quotes: "Racism isn't the shark in the water, it is the water." 
Or: is it more like smog, that we can each do something to help clear?

According to evermindgroup.com, 

“Black, indigenous, and people of color (BIPOC) are impacted both in terms of increased risk for mental health problems and in their access to mental health care. Unfortunately, systemic barriers and inequities prevent those in BIPOC communities from receiving the behavioral health treatment they need. When BIPOC communities are disproportionately affected during moments of national crisis, this problem is exacerbated. “

Is the system imbalanced? Biased?

Let’s find out.

Questions:

1. Tell us your story and why you do the work you do.
2. Tell us about your recent report on inequities in diversion programs.
3. What other inequities do you see?
4. Does the current mental health system's often poor treatment of families especially harm families of color?
5. Are there any ways our podcast could be more welcoming to BIPOC people? Should we publicize your podcast in any way? If so, how?

Links:

https://www.nami.org/Your-Journey/Identity-and-Cultural-Dimensions

https://www.treatmentadvocacycenter.org/

Who Are the 3 Moms?

Want us to cover a topic? Ask us a question? Facebook page @Schizophrenia3Moms

Randye Kaye -Broadcaster, Actress, Voice Talent, Speaker, and Author (“Ben Behind his Voices”)

Miriam Feldman – Artist, Mom, Author “He Came in With It”

Mindy Greiling – member of the Minnesota House of Representatives for twenty years. Activist, Legislator, Author (“Fix What You Can“)

Transcript

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SPEAKER_03 0:01

Welcome to our podcast, Schizophrenia. Three moms in the Trenches. From the place where schizophrenia and real life collide. East Coast, West Coast, Middle America. With Miriam Feldman, Mindy Gryling, and Randy Kaye. And this is episode 35. Welcome to Schizophrenia, Three Moms in the Trenches. One of the three moms is in her car at the moment. So you're just seeing me and Mindy if you're watching on YouTube. But Mimi is here, and I can't wait to bring on our guest. The topic tonight is focus on BIPOC mental health outreach and challenges. And our guest is Sabah Muhammad, a DJ Jaffee advocate. Mindy will tell us more about her because Mindy is the one that introduced Sabah to our podcast and to us. And she has a podcast of her own coming, which we'll talk about. But basically, what we're doing here tonight is we're very aware we are three white middle-aged women dealing with schizophrenia in our families. And we've spoken about this before in past episodes. Often we've referenced how the issues might change or be increased in indigenous populations or people of color, but we can't tell that story. Just for background, if you Google mental health issues and diversity, you will come up with all kinds of articles. One I found is just Black, Indigenous, and people of color, that's what BIPOC is, are impacted both in terms of increased risk for mental health problems and in their access to mental health care. Unfortunately, and this is a quote: systemic barriers and inequities prevent those in BIPOC communities from receiving the behavioral health treatment they need. When BIPOC communities are disproportionately affected during moments of national crisis, this problem is exacerbated. That is from Evermindgroup.com. It's just something I happen to find, and I think it will introduce our topic, but our guest will do that a lot better. Is the system biased, imbalanced? Let's find out. Our guest tonight is Legislative and Policy Council with the Treatment Advocacy Center. If you want to know more about that, that's episode 31. They are advocates working to improve state and federal commitment laws and promote evidence-based policies. And our guest joined them in 2019, and she wrote a lot of years of nonprofit and grassroots advocacy experience. Her prior work includes serving as a public defender in Henry County, Georgia, promoting college and career readiness with the Scholarship Academy, and advancing community servant leadership through AmeriCorps Atlanta. So please welcome Sabah Mohammed. Excited to be here. We're so, so glad. Mindy has been talking about you like for ages. And so we're like, we gotta have her on the podcast. So welcome. Just, you know, I guess let's just talk a bit. Um, Mindy, just tell briefly, like in a minute or less, how you met Sabah and why you wanted to bring her in. I'll let you tell the story of how she came to be here tonight.

SPEAKER_02 3:18

Well, I told it on a preview on a previous program, but for those who might not have heard that, I met her about a two years ago when she was new at the Treatment Advocacy Center. And the two of us were traveling from Arlington, Virginia to Baltimore to meet Dr. E. Fuller Torrey, who of course founded the Treatment Advocacy Center. And I was so impressed with her. And as we talked on and on, I think we had you know two or three hours to talk with him. He's just an amazing man. We were all blown away. And um, Savant mentioned towards the end of the conversation that she was amazed at the ease with which we white people discussed our siblings, and in my case, my son, who has schizophrenia, and that it would be much harder for your mother. So um that just stuck with me. And the whole time we've been doing this podcast, I keep saying we need more people of color, we need more of a diverse audience, and we've had a couple people, but I think um tonight I'm really excited to learn in a more comprehensive way. I'm in a group, this is my last point, Randy. I'm in a group of um five moms that meet and um discuss our children and we kind of support for each other. I'm actually starting a second group um tomorrow where we're gonna be doing that even more with another group because I more people want to be in the group. But two of the families in the first group have biracial children, and they bring up that um it's very scary for white people to call the police. But what about if you are in a crisis and you have to call the police and your child is biracial, has dark skin. And so I think it's very different. All the discrimination that all of us face, I call it discrimination instead of stigma, but it's just a double whammy, I'm guessing. And that's what we want to hear from you.

SPEAKER_03 5:17

And we want to find out, and you know, just by way of you getting to know us, you know, you you know we all have sons with schizophrenia. Um I will share that I've a I was an ADL um anti-defamation league trainer for a number of years, and the training that we went through to do that really opened my eyes to my own previously hidden from myself concept of white privilege. Like I just thought I'm a child of the 60s and I get it, and I'm fine, I'm fine, I'm fine, I'm fine, I'm fine. And it helped me to bring to the forefront prejudices I still had and and discrepancies and white privilege and things that I hadn't thought about. And so, but eyes can always be more fully opened, obviously. And you know, reading cast, and I'm not painting myself in any way, shape, or form as knowing more than anyone else. I'm just saying that I'm so grateful to have this now doubly uncomfortable conversation because we have uncomfortable conversations about mental illness every week, but we haven't had this one. Mimi, if you can just unmute and and briefly introduce yourself to Sabah, and then we'll start with the first question.

SPEAKER_01 6:28

Hi, Sabah. My name is Mimi. I'm in my car, unfortunately. Nice to meet you. I have a 36-year-old son with schizophrenia, and it all came to a head when I lived in Los Angeles, so it was quite a diverse hodgepodge of treatment and all of that. And now I live up in Washington State where it's a little bit different, a little bit better, but welcome. Thank you so much. Happy to be here.

SPEAKER_03 6:55

So, can you start by telling us your story and why you do the work you do? And then we'll get to the nitty-gritty of all the things you want to share with us.

SPEAKER_00 7:04

Um, sure. Yeah, I was um I'm raised in Georgia, very big family. I'm the eldest of seven, and I've always pursued when I from the time I was younger, pursued acting. I was a working actor in Georgia. And once I graduated college in 2005, I just thought, time for me to go to New York and make it big. So I was in New York making it big, but right before that, my younger brother started to be bizarre, and we had no language for what this bizarre behavior was. It was uh a bright, shining student who suddenly pulled away from family, dropped out of school, and wouldn't speak, then wouldn't bathe, and then had all these weird ideas about society that we never had before. And so I left home and left my family, and maybe within a year of being uh in New York, life just going great. I was living the best broke actor's life you could imagine.

SPEAKER_03 8:06

I I've been there a couple of decades before you, but but been there in New York doing the acting thing. So I'm with you.

SPEAKER_00 8:12

Yeah, I start getting these just absolutely bawling calls in the middle of the night, either from my sister or my mother, or maybe my brother saying something bizarre, and none of us knew what it was. And slowly it became it, it was just um more unhinged. Um we didn't get a diagnosis or an understanding until he was standing in somebody's yard in like our neighborhood, not on our street, but a couple of streets over, and they called the police for trespassing. And when we went to visit him in holding, he said he wanted to borrow the water hose. And it was very weird. We couldn't understand what that meant. We of course had water hose. Um and through that they noticed something and ordered competency restoration. And that's when the first time we heard paranoid schizophrenia, and we just thought, well, what? And that we had no language for it. So how old was your brother at this point? At that time, he was just at uh 17 or 18.

SPEAKER_03 9:19

Yeah, yeah, very familiar. Okay.

SPEAKER_00 9:23

And it was just it, it felt like it probably went downhill from there. I was just more and more phone calls from my sisters. If I didn't, they always were just like, you don't understand, you're not here. And I was just like, explain it to me. And they couldn't understand it. They were still in grade school. His behavior just got more and more erratic and aggressive, and they had to go live with another sibling just so they could finish school. Um, family started to be torn apart, no more Thanksgivings and birthdays at my mom's big family house. And he was just in jail about a couple of times a year, every year. For what? For just trespassing or trespassing? Bizarre things, mostly parole violation. He could not keep that date from the original trespassing. Um, he could never show up on time, he could never comply. Sometimes he would he would smoke weed and could not pass the test.

SPEAKER_02 10:17

Um those are such typical things for people with mental illnesses. They're not committing the big crimes. You know, we people think they're scary, but really it's the kinds of things you're talking about are so much more common.

SPEAKER_00 10:32

Just these little things, a lot of loitering. Um, and then it's it did start to escalate. My brother is one of the highly treatment-resistant, more aggressive uh uh paranoid schizophrenia. And I stayed home one day in New York after talking to my mom, and I would go home very often to visit. And every single time, if he was incarcerated at the time, I would visit him. And it was just some of the most difficult visits of my life, seeing my brother in that orange jumpsuit. It was just horrifying through glass. And just kept saying, now that we have this diagnosis, why the police? Why the police? I thought he would go to a hospital, get better, and come back. That's you know, where'd I get that idea from? I don't know. TV, my not knowing this at the time. Common sense would tell you that, but it's not common sense. I like that better. Like, I wasn't that in the dark. That seems like the common sense thing that would happen because by then he was sort of sleeping outside, saying he was going to go search for his father. Our dad was in Fairburn, a couple of counties over, like he wasn't missing or absent, he was right there. But my brother had this weird idea that he had to go in search of him, and he would just sleep outside and he had a nice warm bed. And we kept hearing things like, Well, he's making the choice, and we're like, No way, what is this? And his harm began to escalate, and I realized that I had to come home to help because it turned from these little misdemeanors to uh a harm that got him a felony, and now he is still in that weird competency restoration process. But I came home in 2012, that long that the cycle was that long from 2005 to 2012. We were not able to get long-term treatment of any kind until his harm escalated. And now he's receiving treatment through the justice system. And I became an advocate by accident. I spent hours on the two. Yeah, I was trying to figure out what happened. I still needed to know that question why the police, why the police? And I finally found uh mental illnesspolicy.org. DJ contacted me like within the next few days, got me in touch with Treatment Advocacy Center, and I was just off my rocker by then. I was like, I want to do more, I want to do more. I didn't even know what that meant. Uh, so I started learning what it meant to go to the Capitol and actually advocate and started just doing that on my own. And then DJ started sending people my way who were in Georgia, and I was like, I am not prepared for this. I'm just a big sister, I don't know what I'm doing. But I remember the first conversation of the woman he connected me with, she was just so happy to have somebody else to talk to. I just thought the next time I talk to somebody, I want to be able to legally help them. And I decided to give up acting for a little bit and the entertainment industry and go to law school. So I could legally help. I still don't even know exactly what that meant. Became a public defender to legally help, and then finally there was an opening attack, and I get to legally help all the time.

SPEAKER_02 13:43

I ask you a question when you were a public defender. Our son has had many, he's been in the Orange jump shoot jumpsuit. He's been charged with a felony, which he was knocked down to a gross misdemeanor. But his his public defender for the felony charge said virtually, if we're going to count substance abuse, virtually her entire caseload should be going to diversion court and health court. And then, you know, our county took 30 people, a big, huge county, and um in in Minnesota. And how did you feel when you were a public defender? Maybe you weren't uh representing this people with mental illness like she was. I mean, she was just representing people that got felonies, actually. And she said most of her clients, almost all of them, should have been in some kind of diversion court.

SPEAKER_00 14:33

I I would absolutely agree with that. I was representing misdemeanors, and especially the people who were just cycling. Like the prosecutor gets this long list of crimes and they're like criminal. And I'm just like, can we go upstream and see why? And there were so many health problems, generational trauma, just lots of different things that people were dealing with. And even diversion court was a privilege. You had to have the money because it's a it's woven into there that you're paying a monthly fee in my county. You had to pay for all those services. Not in Minnesota. That's that's that's even worse. Of course, you're in Georgia. Oh yeah. Oh yeah. Um, so that carried a privilege with it, who the prosecutor looked at as worthy, who the judge saw as worthy, those were the people who got into mental health court or into diversion court, DUI court, uh uh drug court. I was in mental health court.

SPEAKER_03 15:28

So can you define for any listener who doesn't know what diversion court is? That's not that not something I've ever heard of and in Connecticut. And just briefly, DJ Jaffey, um just who he is, because we've had comments on some of our other who are you talking about? So can you uh let's talk diversion court first and then just a brief who DJ Jaffe is. Okay.

SPEAKER_00 15:52

Um, so diversion court is diversion, restorative justice, they're all ways to sort of offset the harm of criminalization because so many people are guilty of not being able to survive survival crimes. Or like in Georgia, if you cross over the white bulk line at a traffic stop, that's a criminal violation. That's not someone really doing something criminal. And if you happen to uh you didn't get your license up, uh your license is expired, you could go directly to jail for that. So if you're impoverished or if you um have a substance use disorder, if you have a mental health issue, the court will try to offer something that's not solely punitive because most often jail is solely punitive. There's no rehabilitative element to it. So divergent court comes into play to offer some rehabilitation if you're committing a crime or justice involved because of some other reason. I wish there was more attention to people who get in the justice system because of poverty, but there's not. But that's just another intersection altogether.

SPEAKER_03 17:01

And I'm sure, I'm sure diversity has some play in that as well.

SPEAKER_00 17:06

But um, like as a public defender, I was in a well, I was in two counties, the one county, Henry County, Georgia, is majority white. Yet my clients were majority black and brown. And just on a simple common sense consensus, are they driving differently or are the police in a certain location? And I would see the same zip code address part of that county over and over and over again. Were they in our area with the business and the commerce and the big nice homes, or were they over near the apartments? Aren't we all driving over the white block line a little too far? But only some people are being followed all day and criminalized all day and monitored. And while prosecutors don't have to give you the raw data and the numbers, you can just look at the courtroom and say, well, why would it turn out like this if the racial and cultural minority are overly represented in a in a county that is predominantly white? And we can just start there asking the uncomfortable thing about what we can see from a quick census sometimes.

SPEAKER_03 18:13

Okay, fair. All right, so I I interrupted your story. Um continue with it. I can see your story and your passion. Tell us where your brother is now, and then I want to hear about your recent report, more about the inequities in diversion programs and other inequities that you see.

SPEAKER_02 18:32

And also who is DJ Jaffe?

SPEAKER_00 18:34

Yeah, DJ. So DJ Jaffey and uh Dr. Torrey used to work pretty closely together. Um, he is a severe mental illness, he he was, he he passed, he was a severe mental illness advocate. He wrote Insane Consequences, which is a bit angrier version of surviving schizophrenia. I think it's a much more which was Tori's book. Dr. Yeah, right. Okay. Dr. Torrey's book. So they they represent sort of this DJ's going to advocate as needs to be, well, not even needs, as the anger and the rage drives. That's how that was his style. Uh it was the chant every parent wanted to see that, I tell you. It was very good. We're angry. So yeah, every caregiver needed that, but that doesn't get you, you know, federal legislation all the time. It doesn't get you into the doors, it's it's longevity. So that's where Treatment Advocacy Center were different parts of the same type of advocacy. Like we have to be able to finesse the room, know the statistics, come in and be cordial all session long to try to get those bills to pass. So it's just a different type of advocacy. But he was he was the parents, people's advocate for severe mental illness before.

SPEAKER_02 19:51

Awesome, thank you. And I was a legislator for 20 years, and I we call it the inside versus the outside inside versus the outside. That angry inside person to get everybody to listen and do the compromising with the other people. Yes, absolutely. Absolutely.

SPEAKER_03 20:10

Okay, so and and Dr., if you're listening and you don't know Dr. E. Fuller Torrey, to me is more on the educational side of advocacy because I remember doing a play and I was backstage when I wasn't on stage reading surviving schizophrenia in my evening gown. And the other actors in the play are like, what are you reading that for? And I'm just like, trust me. And that it so yes, so those are we will put those in the show notes. Those are two kind of evergreen resources. Um, so let's go back to more about you. I guess you wrote a recent report, and you're going to have a podcast soon focusing on this, I think. Let's start with the report first on more of these inequities. Tell us more about the inequities in diversion programs or other inequities that you see.

SPEAKER_00 21:02

Oh, okay. So that yes, that's what I was getting into. When it comes to restorative justice, mental health courts, um, you the inequities can begin with any sort of marginalized identity, whether you're impoverished, whether it's a gender marginalization, racial and cultural marginalization. Um, and you tend to see it, like I said, in my uh experience, just take a quick senses, uh consensus of the room, census of the room. And when I was in DUI court or mental health court, you I would have the white clients. So my majority of my client pool were black and brown. But in diversion court, that flipped. And the majority were now the white clients who could maybe afford, maybe have a support system, or maybe just if the prosecutor sees their self reflected, all that's like my aunt. That's like my mom, and they don't feel the need to police you, then they give you opportunities. And sometimes that's in their conscious, sometimes it's in their subconscious, because we are a country that has woven that into our laws, into our policy, into our practices. And we've tried to undo it with one or two laws, and just like that didn't work for mental illness, it won't work for race and culture. So someone would struggle if they did not speak. Uh, if English wasn't their first language, went language in DUI court. And there's like, well, why not have a translator? It's already a part of the budget. Let's just have them. They're there in regular court, let's put them in DUI court. But that would not happen. Or reduce the costs, waive the fees if someone is impoverished. Or racial sensitivity training, if someone doesn't know or intentionally knows, I don't serve those people. They don't deserve it. They're aggressive anyway. And we've got to do as much as we can to combat those different levels of racism.

SPEAKER_02 23:06

And you did your study, was it nationwide, or how what was the uh pool that you were studying?

SPEAKER_00 23:13

Uh for this this recent article, it was um it was a case study and it was a research study on other forms of restorative justice. So if you look at restorative justice practices across um the country, everyone is sort of doing this truth and reconciliation. We have been excluding uh people of color, we've been excluding indigenous people, we've focused on youth. It's time to start focusing on the people who are the most vulnerable in the system. So we took those writings from other scholars, other legal experts, and sort of combined them where no one ever talks about severe mental illness anywhere. So we can always bring severe mental illness to anything, just like housing, just like parity, just like job access. If you bring up severe mental illness, it's likely no one else has bothered to take the time to talk about it. So a lot of our data was anecdotal because we as advocates know that we're being excluded, and we don't need anyone else to tell us. We've done the research to know if you say mental health, you're not going to reach our people struggling with severe mental illness. Well, likely you will not. And that's kind of what we use to frame this understanding because they automatically exclude uh crimes that include a victim violence, or if you're too sick to recognize that you need mental health court, you can't ask for it. So that's how we know we're being excluded in those spaces.

SPEAKER_02 24:42

And almost too- I I I tweeted, retweeted um your post on that you found inequities in the diversion courts, but I hadn't didn't read it because I knew you were gonna be here. So I appreciate that summary. And I would um urge you to broaden that and actually look at diversion courts and the different models in other states, because in Minnesota, you know, my son was qualified for it twice and he only got it once, but now money because in our state, the state provides startup grants, and then the counties have to pay for it after the startup grant is over, and hence only four of our 87 counties have mental health courts, and none of the others do, and it's a county option. But once the county does have one, they have they cap it as to how many people they're going to take, but it's free for the participants other than the usual court fees. So we don't have that dimension of those who can pay for it get it. It's just a matter of there aren't hardly any spots. And then the second time Jim qualified for it as a white man, he didn't get it because um he lived in a different county.

SPEAKER_03 25:54

Yeah. Still there's there's a lot, and um, I want to I have a question to continue this conversation, but uh I want to invite Mimi to unmute. I know this is a topic that you speak about a lot on our on our prior podcast, so I just want to give you a chance to chime in and just ask anything or say anything. Go ahead.

SPEAKER_01 26:18

Yeah, you know, the thing that is the component here that I think is also important to address is the cultural component beyond the racism, but the cultural component in different communities of color, in terms of how they process and deal with and talk about mental illness, because it's like we always say it's bad enough if you're middle class and white. But I mean, my experience with people that I talk to is that in other cultures, in East Indian culture and in black culture, that um it's something that isn't even discussed or addressed, which when you have somebody like um was Sid with anasytosia who can't um advocate for themselves, and then the family isn't willing to speak. That person really has a double whammy on them for falling through the crack.

SPEAKER_00 27:17

Um, do you do you see evidence of that? Absolutely. Um, just anecdotally, from trying to do this podcast for tech, most of my family members just can't. They literally physically start to get anxiety, they start to fear for their loved ones' future for their community, the stigma, the discrimination, the backlash. I get more sorry, high blood pressure. Can we reschedule, please? And anecdotally, I find when I'm like with you all, you're like, damn it, fix this. This is my story. And it's just it's pivoted to I if I tell there can't BB Moore Campbell, who is an advocate who was passed, she said there can't be a great book. She was incredible. Yeah.

SPEAKER_01 28:14

In LA. Yeah, I met her in LA when she got the you know, it was when I was just completely just you know, drowning under all of this, and I she gave a talk, and I went up to talk with her afterwards in one of one of those classic things where I just opened my mouth with all these amazing, insightful things to say, and just started bawling like a baby because it was just somebody who got it. She was something else. Yes, yes, phenomenal.

SPEAKER_03 28:43

So, what did you want to say about BB Moore Campbell?

SPEAKER_00 28:46

I'm going to misquote her terribly, but it's something like you you were born into this martyr or this race where you're perfect, but someone has told you you're not, and then you pair that with severe mental illness, and it we just can't have one more thing, and that drives so many of us to just silence and and to be silence and advocacy. That's one of the reasons why it's so important. We need that representation. You just need to see yourself to know that there's belonging, because even though we can legislate and pass as many laws as we want to that promote integration, belongingness is very different. And even in some of my advocacy circles, even in uh sort of the Facebook group, there was a lack of belongingness. And that's that's different from tolerance. And we need more belongingness.

SPEAKER_03 29:40

Absolutely. I, you know, I'm not a fan of the word tolerance. I'm a bigger fan of the word acceptance. Tolerance just you know involves eye rolling as far as I'm concerned. So I'm I I'm more like understanding. There's a whole great TED talk about tolerance. No, we're not going to use that. If you Google it, you'll find it. But I had a few things to add and ask you about, but Mimi pretty much brought it up. But I will share that, you know, my my way of advocacy is less legislative and more uh educated, you know, and not educated, educating, as evidenced by this podcast. And so I'm a NAMI family-to-family state trainer. I train family volunteers to teach this course, whose only purpose is to educate, educate family members, siblings, parents, but they have to be willing to want to be educated. And then you have to admit there's a problem. So um, but I will say, in the years that I've taught it and trained people to teach it, in the last few years, they have finally, they finally changed the curriculum to include particular things that were, that were different. First of all, they got Spanish language family to families. And then in all the materials we use now, there's a lot of things like reactions to medications that are different in people of color than with white people, just medically different. And it was really important to get that in as well. Uh people who have been in my groups who have been um Indian or background of Indian culture are uh they're like, what do you mean you don't take care of your family member in your own home? They're all about no, they stay with the family. And if we have to crumble their meds into their food, we do that. And you know, it's very, they don't understand this like getting someone else to take care, you know, the cause, so just cultures are different, not better or worse, but just different. And I once did a a family to family where I was the the the two teachers were the white people and everybody else was was of color, and I God loved it, loved it so much, but I but I found that the two things were huge. Three one, there was a lot more military people in there. Um, there was a reluctance to speak, followed by what Mimi did with BB Moore Campbell, just like a spilling of everything. Like once the dam broke, there was so much, but there was so much support and food that came in snacks. Um, that it it just was uh I I was amazed and you know, just blown away by that group. They were a little bit different. And when the when they first started doing it in Spanish, the instructors were told add a half an hour to the classes because Hispanic people like to talk more. So, you know, and I don't know, that's stereotyping in a in a way, but it's also adjusting, you know, it's adjusting. So I I wanted to know um medically and culturally, is there, do you feel there's more of, is there a different reaction to treatment? And I think you've already addressed this. Do you find a huge reluctance to to have this one more thing on your shoulders of mental health? Is it, you know, in the and I don't mean to ask you to speak to everybody of color because you're one person with three people, you know, but it's just like, but you've done the research. So as a researcher, have you found that culturally there's uh more fear of stigma, more let's keep it to ourselves? What have you found about that?

SPEAKER_00 33:29

Um medically and speaking systemically, there's definitely a fear uh that's just of the entire system. And a lot of us say there's this mistrust. And I've I've I have to stop saying that to say it's not mistrust, it's being well informed. It is recent and present history that black people were denied the same health care, denied the same access. Um, my uh godparents, who were only 65 and 70, it still says like Negro and colored on their birth certificate. They still in Florida had to go to a segregated doctor. This isn't different, this isn't new, it isn't old, it's just, you know, it's uh the the smaller percentage of the population went through it, so we tend to push that to the side and say, well, it's not the big experience, so we don't have to worry about it. But it's it's the you know, the people in my life, and they know that you can't share with the doctor. Um, they know that you may not get to go to the doctor. They and we'll make up this cultural thing, like, oh, they share with the pastors and the friends and the neighbors. Yes, that became the practice, but because of segregation and lack of inclusion and lack of access, that was had to legally be challenged. And our um legal history of inclusion is very recent, it's 1964 and it's only federal. And that's what we we have to keep reminding ourselves. My mom was a little girl, you know, it's like it's not this thing that's in black and white, it happened in color. Um that creates something that is a real barrier. Like if my grandmother could only go to one doctor in her county, literally by 1964, was she ready to integrate? Did anybody get the tools to integrate? Or was it just sweeping law, figure it out? And we are the these generations we're we're coming back to say, no one figured this out. It's time to have these uncomfortable conversations and do the implementation. And you can see that paralleled in the uh community mental health act. Give or get everybody into the community, and we're like, hey, you didn't write the implementation, you didn't tell anybody how to do this, and now years later, we're still trying to figure it out and demanding better laws and demanding better access. And that's where that intersectionality comes from, and that's where that reluctance to speak and the hesitancy to get involved in the system comes from.

SPEAKER_02 36:13

I want to ask Randy when you mentioned the, you know, I know one of the things they do at the end of family to family is ask or try to recruit people to be trainers. Did any of that group um volunteer? Because um, that's one thing we hear a lot about that we could ask Sabah about as well, you know, just the lack of professionals, and these would be volunteers for family to family, but the same sort of thing. The ones who are imparting information or doing medical care are too often uh white people compared to um how many people of color need to relate to somebody's so they can share when it's hard for them to do with two things.

SPEAKER_03 36:56

I'm certainly hoping that's changing. You know, I live in in liberal Connecticut. So, you know, it's yes, we did get many professional people in the group and people volunteering to to to learn and speak out, and it's perfect here. It's not perfect here by any means. It's not perfect here by any means, but um the attempt is there. So and you know, we we want to know there's work to be done. I mean, there's work to be done, there's a lot of work to be done. If anything, it's more and more clear in this country that there's a lot of work to be done. And so, in our little tiny way, in our little tiny podcast, what can we do? Is there anything we in our podcast can do to be more welcoming or inclusive or aware of these issues and challenges in the BIPOC community? Can we help by publicizing your upcoming podcast in any way? Like what can we do in our little world to make it better?

SPEAKER_00 38:09

Um, just asking, being awareness, spreading awareness and allyship is a very big deal. Um, so something like where if there's volunteers and if you have, if you don't feel voiceless, you'll volunteer. But taking a moment to say, okay, what about the voiceless people who maybe need a little bit more for belongingness? And a lot of people have that attitude of, well, if I can do it, you can do it. We need to just pivot that and say, because I did it, let me make sure I'm extending a hand to someone that may not know they can do it, who may not know the access, who may not know, like getting those stories told, breaking down those networks. So, like if you heard a great story and you get on this show, or you say, Do you want to write a book? Here's how I wrote my book. And because you won't, because of the lack of access, because of feeling marginalized and voiceless, you just you may not know to reach out. You may not know that you can use that network. Um, when I speak to other advocates of color, they say, especially if they've been doing this for many decades, they say they kept asking me to join, but they wanted the black or brown face, not the black or brown issues. So we have to care about what those issues are and put them in the policy. And that also will create the sense of belongingness that's that's not there. Uh, knowing when we're being dismissive, knowing also that you have to be, and I know everybody is like, oh, not the white savior complex. As long as it doesn't come with like, hey, I saved somebody, then you're doing a good job. So I I saw this really cool meme that just said, most people think racism is the shark, but really it's the water. And I thought that that's a good visual of what it's like to experience it. But I also think I like to use racism as like a smog because we can get rid of smog. We can do something about the smog. So it sits over everything like a smog, and you're not responsible, but you have the tools, and you can say serve as a protector against you. May not understand what people are thinking. We think, oh, racism is the shark, but really it's also indifference, and you can be someone who introduces those sort of um ideas to groups where people are reluctant. Know that you need to protect marginalized people, people of cultural marginalization from those people who like say it's treatment. I go in to get treatment, and the person doing the intake, we think of racism as I don't serve them, they're violent, they have an attitude, they're aggressive anyway, it's drug seeking, it's not mental illness. Okay, that's the blatant racism we all know. But what if it's something else? Like those people are so sassy and fun or strong. What if that bleeds into my diagnosis? What if I'm manic, manic, manic, and you think I'm being sassy and you miss my diagnosis? What if you think I'm strong and you give me less pain medicine than I actually need and I don't speak out because I'm voiceless? So once we've gotten that blatant sort of hatred out of the way, we've got to realize, okay, the work continues. It continues to that subconscious thing that we might think is positive, that we might think is harmless, but it it can be harmful when we're in a treatment setting or if someone's doing a quick shorthand and we we have to pivot our work to being just a little bit more extensive and nuanced than what we thought. And just keep at it, you know, keep the reading list going, where you're introducing new advocates to other advocates. Um yeah, I mean, this is a great start, and just that knowing this that you you keep going and and racism looks a little bit different from what we all thought. It's not just crossburnings in the yard, it's it's something that needs to be kind of piece by piece taken out of the fiber of our society.

SPEAKER_02 42:16

I have a feeling your smog comment, Randy's gonna lift that out and put it in the end of the uh end of the podcast because it might be the soundbite, who knows? Uh you know, is it beautiful? And when I read Cast, I also read that too. I try to educate myself as much as I can, knowing I'm a person of white privilege. And one of the most um disturbing parts of it wasn't a sharp behavior of the racism that she experienced in this day and age. It was when she was on the airplane and people were, I can't remember what they were doing, but it was uh somehow she was called out and then nobody helped her. You know, they just all streamed out of the airplane. It was very subtle and uh to me more chilling than if someone had actually done something overt. I have one last question because I have a feeling we're coming to the end.

SPEAKER_03 43:07

Yeah, we we're we're coming to our final minutes, and I want to make sure Sabah has a chance to have the last word of gee, I didn't get this point in, and here's specific things that we can do, and I want to hear the name of the podcast. So go ahead, Mindy.

SPEAKER_02 43:21

Okay, this is well, this is a question about family. So I was heard a panel once where um all the panelists were how important was it for the family to be involved, person dealing with serious mental illness. And everyone on the panel, there were three white people and one person uh of color, a black man representing a place called Ujama Place, um, which serves black males actually, many of whom have mental illness and they work unemployment. The other three white people all passed over how important the family was. They were Talking about person-centered care, not mentioning anasygnosia and so forth. The person from Ujama Place said in our families, it's essential. It would be impossible to help people with mental illness without family. I wonder if you could comment on that.

SPEAKER_00 44:22

For me, that's really personal. I come from a big family. And unfortunately, both my parents, my mother has rheumatoid arthritis and father has MS. Physically, they were just limited with this son. And they had to call in everybody to get rides, places, uh, to just understand, to cry on the phone to, groceries, just everything, everything that you could imagine. Quick housing when he refused to stay in his room, just all the little things. Uh the family sort of rose to the occasion to get it done. And there were some friends that he would speak to. Um, and it because it can be, we don't know the extent of of what his his delusions are, what he's thinking. And we've had friends who are, we're childhood friends who he just light would light up and speak to. And that uh probably couldn't happen in intake or hospitalization because time, because uh race, because of who knows what. But thank God that family unit was there for a little bit of of all the pieces that we needed. And we still, it's an all-call. Uh his center is about an hour and a half away. And we have family friends who ride with us and come and pray with us while we're there. Uh, family who just gives my mom a place to go when she can't anymore. So that becomes our community. It becomes the things that connect us. Um, we've had pastors go visit just because they'll let the pastor in sooner than they'll let a family member in sometimes. And oh my gosh, ours. So yeah, it's really important. Is your brother currently um incarcerated or is he in? He is he doing he's in competency restoration limbo. So he is, like I said, very highly treatment resistant. He um meaning treatment doesn't work or he won't do it? Both. So we I don't know yet uh what his medications have been. Um, it's a little bit of a revolving door of social workers. Each one is different in how they interpret HIPAA and will allow us to know what medications he's on, what's working. Um, my mom does get some updates that she's able to relay to us, but it just we haven't seen anything. It's been about seven years. So he is on a competency restoration hold until he can uh face or verbalize or communicate what uh has happened, and he has not made it there yet. Um yeah, and as far as we know, he's still in that place of constant psychosis and and delusions. And we're just I've I had a family member I spoke to recently who said it took her brother 10 years, and so I'm like, I understand that for as long as you were sick and untreated, it may be that long to just get you to a place where you can have a lucid conversation again.

SPEAKER_03 47:28

There, there is there is hope, there is also grief. Yes, you know, we can we all share that, and we are we are kind of running out of time. I would have loved to ask you about because one of my I I'm Jewish, and so um I was amazed that of all the pamphlets in my rabbi's study when I went to get help, there was nothing about men, there was just like what to do, you know. And it was just like, where's the schizophrenia pamphlet? So I, you know, but but they did hear me and they had a weekend where they brought a panel in of someone with schizophrenia and a psychiatrist, and they've been then they they brought me in to speak about the book. So they they rose to the occasion, but one of the things I like to do is educate congregations about what they can do to support their congregants, whatever, whatever the uh religion with um when you have a mental illness in your family. And and it's tricky because uh every religion is different and they look at it differently. And I I don't know if you have a short answer for if you've had any pastoral support for your family issue, or if the congregation, if you because you said you pray and you know, so I don't know if you have a church or congregation, or you know, do they get involved, do they help, or do they just kind of let the family handle it? And that's really a question for anybody of any color. I'm just curious if that's been helpful to you.

SPEAKER_00 48:56

It has, uh, and there's been a mixed experience. Um, I was raised Muslim and being from the South, there are a lot of churches and ministers in our life, a lot of Imams also. So are you going? Are you in mosques then? Or I am currently not, no, but um uh one of the Muslim ministers did go, one of the Imams did go to see my brother. And when I so if friends invite me to church, I go and I found a church that I really did enjoy. It was I know it's it's very weird.

SPEAKER_03 49:28

Sassy, was it sassy?

SPEAKER_00 49:31

It was a good place to go to uh be in this space where I needed something positive every week without saying I'm a Christian. It's like, no, I'm just going to this positive place. So I would tell the pastor there all the time, you know, you're telling a bunch of people who need help that we're unworthy of God's love. Have you ever thought about that in these messaging? And he said, Oh, wow, good for you. Good for you to put that into consideration. And the very next time I was at church, he started mention mentioning mental illness and mental health in the like roll call of conditions. It's always, it wasn't the cancer that got me. And he's really started to bring it in and not to take it on himself, but to direct people to actual counseling that was not uh religious based. So uh a Victor Armstrong, have you all spoken to him yet? He's more of a suicide prevention advocate, but he said this wonderful thing about the church. He said they are they're like um they're into commerce as well, and they have to adhere to customer service. So speak up and let them know what the customers want. It was something like that. And I really appreciate him for saying that. Um he's uh he's a was a uh a guest on the the podcast.

SPEAKER_03 50:45

So on your podcast. Awesome. So tell us the name of your podcast and any last-minute words that you have. And Mimi, I know you're you're you're unmuted, so um maybe don't give me your last words yet, Sabat. Mimi, anything, any of your last words you have?

SPEAKER_01 51:02

You know, I'm still kind of stuck on this thing of what do we do? How do we help? How do we change this, you know? And um, you know, there are those of us advocating, there are those of us legislating, there are those of us making art. But I think that above and beyond or you know, underneath all of that, we gotta really be talking to each other. You know what I mean? We've gotta open our mouths and we've got to speak up and we've got to talk to each other, and we've got to, you know, advocate for each other outside of our own little groups, too. Because you know, I keep thinking about the metaphor of you know, marginalized people. Well, you know, if there's a picture of marginalized people, it's mentally ill people. And then, like you were saying, you add to that to people who are already marginalized because of their color or their culture or their economic sense, it's it's overwhelming. And I think it's up to those of us who have a little bit better of a foothold here to bring the other people in and to speak up. And that I mean, it's just I think it's a real groundrous thing, but I think it makes a difference to talk to people and tell them that there's help and you know, invite them in. And I think that is something we all should do.

SPEAKER_03 52:26

Awesome. All right, Sabah, your final your final words and um how we can help with your podcast.

SPEAKER_00 52:33

Well, we have yet to name it. So well, you'll have to let us know. Okay. Invite me back when it's time to launch, maybe. Yeah, we'll do that. Because we've yet to name it. That's like the one thing I keep pushing off to the side. I'm having wonderful luck with guests, uh, especially the experts, uh, family members, they are out there. I have to dig a little deeper and get through stigma. Of course, we're going to have like a whole racial stigma episode because of the the just the sheer anxiety of putting your story out there uh when you're already racially marginalized. Um, and these they're going to be great. And I I can't wait to uh share them all with you. But I like you must have done your first time. This has been a show, making a podcast is one of the most surprising experiences. And I come from the entertainment industry. I thought it would be like doing voiceover. It is not.

SPEAKER_03 53:28

No, it is not.

SPEAKER_00 53:31

So we had our work cut out for us, and but it's coming together beautifully. It's finally to that place where I'm like, I cannot wait. And um, I just want to, I don't have the like the biggest best last words. I do really like what Mimi said about speaking up. And when we're speaking up, making sure realizing that someone else is still voiceless. Um there is a lot of work to be done. Um when I got into this work, I I just took a moment and thought white advocates don't understand that the barriers you experience for severe mental illness are what racially and culturally marginalized people experience being everyday existing. And it is overwhelming. We have to take it a little bit at a time. Fix what we can, my favorite title. And thank you. I want to see the change. Um, I want to see like swoop sweeping change, but we have to realize that it is that smog. And it's it's over so many things that we we don't even think about. Like you mentioned medically and diabetes and policing, and it's just so many things that are going to come up. And we just need to be we know that we're capable because we weren't advocates before this. And and it's the same advocacy, it's just uh reach a little further into those margins, you know, give the voices to share your platform and and and lift everybody up because I always say all bolts are going to rise with that tide when we reach out into the further margins. And we can. We definitely have the tools.

SPEAKER_03 55:13

Those are perfect last words. Thank you so much for joining us today.

SPEAKER_00 55:17

Thank you for having me.

SPEAKER_03 55:18

Hey, thanks for joining us for this episode of Schizophrenia Three Moms in the Trenches with Randy Kay, Mindy Gryling, and Miriam Feldman. To get in touch with us or to learn more about our books, please visit our websites at MiriamHyfenfeldman.com, mindygryling.com, or randyk.com