Going for Broke: Making Up Our Minds
How we live is indelibly intertwined with the care and empathy we give to each other. What if we put care into helping Americans find homes and build dwellings, into keeping their bodies and minds sound, and finding meaningful and well-paid work? In this three part series, “To The Best Of Our Knowledge” and the Economic Hardship Reporting Project bring you real life stories about economic struggle in our time, as well as ideas for solutions.
Post-traumatic stress disorder and other mental health challenges can push people into poverty. Meanwhile, the experience of financial desperation can also create even more trauma, even more suffering. How do you break the cycle? How do we truly care for people mentally and financially?
If you or someone you know are having mental health struggles, we wanted to make sure you are aware of some resources. The National Suicide and Crisis Lifeline is available 24 hours a day by calling 9-8-8. The National Alliance on Mental Illness reminds us that one in five people in the US has a mental health concern every year. You can find support and education at their web site, nami.org.
– It’s “To the Best of Our Knowledge”. I’m Anne Strainchamps. It’s usually not just one thing that pushes someone over the edge. For Alex Miller, it began with a phone call to New York.
– So I had a friend and I was telling him, you know, “Hey man, it’s not going so well, not really doing great in Florida.” He’s like, “Hey man, I got a spare bedroom. If you ever wanna come up, why don’t you just come up, and get you a job,” and blah, blah, blah. “You can stay with me, we can just get you back on your feet.” I didn’t realize that it was a limited-time-only offer. I mean, I was out on my ass within the week. I was like, “Man, I’m trying. I’m going in different places, trying to get a job at Starbucks and McDonald’s,” and that’s the best I could do, so yeah. I have enough money for a hotel for like two days, and then I’m just completely homeless.
– Stand clear of the closing doors, please.
– First I’m sleeping on the subway, just riding back and forth. I had to make sure that I only slept a certain amount of time, otherwise I was gonna go to jail just for existing. So I did that for three, four days, and then I was sleeping on benches. What was really bad about it was that this was in the middle of a, they called it Snowmageddon, 18 inches of snow on the ground. Like, you know, I realized I can’t do this. Man, I’m going to die for sure. So I check into the homeless shelter and yeah, that’s how I got started in the homeless shelter system.
– In 2006, Alex Miller was a US Navy IT specialist. He was tracking pirates off the coast of Somalia. Two years later, he didn’t have a home. Now there are hundreds and thousands of US veterans who’ve experienced homelessness, and beneath many of their stories, there’s a familiar pattern, a link between trauma, mental suffering, and financial hardship. And these conditions are so interrelated, so layered, one on top of the other, it’s almost like a feedback loop. PTSD and other mental health challenges push people into poverty. Meanwhile, the experience of financial desperation can create even more trauma, more suffering. So how do you break the cycle? How do we truly care for people financially and mentally? This is the second episode of “Going For Broke”. It’s a three-part series about economic struggle in our time. We’re collaborating with the Economic Hardship Reporting Project for this series, bringing you real life stories and some ideas for solutions. And I’m very proud to welcome longtime broadcast and Public Radio journalist Ray Suarez to be our host today, hi Ray.
– Hi Anne, thanks for having me.
– Oh, it’s our pleasure. So can you say more about that connection between mental stress and disordered thinking and financial hardship?
– Well the cliche question, or maybe just the natural question is, how does homelessness happen? How does mental illness happen? Are you okay and housed one day, and simply not the next? To me, the results when you look into the data are not exactly shockers. Look at our country. I mean, take Alex Miller’s story. Alex didn’t go to school until he was 11 because of family crisis. He’s been diagnosed as bipolar and has PTSD and he’s Black. Research from the US Department of Housing and Urban Development discovered Black Americans make up nearly half the homeless population, but they’re only 13% of the American population. And needless to say, poverty and homelessness are mental health stressors of the first order. And we’d just like to let listeners know that in this episode, there are several mentions of suicide.
– I didn’t realize how PTSD can manifest because, well, when I got out at the height of the recession in 2008, I got no job, I can’t get a job. It was just so many things, and then I found myself just getting angry about everything. But then I started to stop feeling, like I couldn’t emote. I couldn’t get happy anymore. I couldn’t really feel sad. One at a time these emotions would just go. And then I got to a point where I just, I didn’t care. You know, I could see somebody get murdered in front of me. I just didn’t care, it was just gone.
– These things are tough to go through at any time. I’m wondering whether the economic pressures on top of all this just made it worse, just made it harder to pull yourself out of your situation.
– Oh yeah, definitely, definitely. So I get in the shelter and you have to work, or if you’re in the shelter, because otherwise they’ll kick you out. They’ll give your bed to somebody else. So I found work, I was working at Family Dollar, and within like that first month I was able to save up enough money to move out of the shelter into transitional housing, the SRO, which was, oh man, whoo. You wanna talk about tough and rough?
– Yeah, a lot of people have little or no familiarity. Most Americans don’t live in places that have SROs. So maybe you can tell us a little bit of what that system looks like.
– So the SRO, the single-room occupancy, also called like a flop house, a boarding house, basically it’s just a bed, a sink, a desk, a chair, and a fridge, and that’s just your room. All it is is just like the utilitarian version of actually living, so-
– But it’s better than the shelter, no?
– It’s better than the shelter. It’s better than the shelter.
– And it’s much better than the subway, no?
– However, however, the amount of unchecked mental health issues, drug use, murders. I mean there were so many murders that happened in the SRO. Literally one of the guys, he got stabbed 27 times and he was in a wheelchair. And I’m like, “Wow, they really wanted this dude dead,” because where is he gonna go? He’s in a wheelchair. You coulda stabbed him seven times, but they are like, “Nah.” So the crime was there and it felt like, honestly at that time, it felt like I flew out of the hood when I was a kid just to land back in the hood as an adult. It was pretty rough.
– I don’t wanna make this sound like just a horror show from beginning to end. There were happier emotional aspects of your life, including the subject of a fascinating essay that you wrote on dating. What’s it like to try to have a relationship while you’re not securely housed?
– Well, I think for a good deal of the homeless population, they are people that you just won’t know are homeless. They’re just the working homeless, and they don’t want you to know, so you don’t know. And that was my case. I just pretended like everything was normal, and we would always go to her house and she would never come to my house. And I’d make some flimsy excuse like, “Oh well,” I think I said I had bedbugs. I used that a few times, i used bedbugs a few times.
– Well look, I was reading your essay, and I thought about it, and I’ve covered issues around housing and homelessness for decades. And it reminded me that society seems to think of people who don’t have a secure place to live as being completely defined by that, by their housing status. And they never think of them as having the same needs, the same desires, the same full emotional lives as anybody else. That a homeless person has the desire for companionship, relationship, physical intimacy, that all gets lost in the overwhelming definition of homeless. It’s kind of a problem.
– It is, I mean it’s way easier to think of somebody as destitute and less of a human than to consider the possibility that you could be in their place at some point. Because then you have to actually care, you have to actually give a damn. You can’t just walk over people on the sidewalk if you could be in their place. So you make up an excuse for why they’re there. “Oh, he’s on drugs,” or he’s crazy or whatever. That’s the whole thing about it is, I wanted that companionship. I wanted to feel like a regular human feels, have romantic love, because what else did I have? You know, what else could I lose? And then, you know, once she found out that I was homeless, everything changed. It spiraled out not long after that, it just .
– So once she found out, that was the beginning of the end?
– Pretty much, yeah, yeah. She said, “Well, look at where you live. I can’t be with you.” I was like, “Oh, well you know what? Let me just go cry in the corner real quick.” Yeah.
– During all this time, were you getting help for your PTSD?
– Well, I finally reached a breaking point and I, well I tried to kill myself, ’cause I couldn’t stand being in my own body any longer, it was insufferable. So that didn’t take. I ended up at the VA hospital, and then I was diagnosed as well, PTSD and then bipolar too, with psychotic breaks. And so thankfully all of this stuff was figured out and I got the help that I need. But just to have to go through that, I don’t think that should happen. The VA is not the most welcoming of organizations. A lot of times before you can get help, something bad has to happen. So it’s like, why, why do I even try? I keep getting told to come back later or, “We can’t help you,” or, “You’re making it up,” or you know, whatever. I’ve heard so many excuses from the VA man, it’s insane.
– Well, I’m wondering, given all this self knowledge, the struggle to understand the long journey from the south side to the man you are today, does this story have a happy ending?
– I, so far it does. I hope that I keep doing well, and I hope that I’m not homeless again someday. I hope that I find a nice young lady and-
– But wait a minute. You know, you just dropped that. You just dropped that like I wasn’t supposed to notice. Do you still think in the back of your mind that the possibility is just unremarkably there, that you could be homeless again?
– Oh no, I mean, I have no doubt, you know? Every day that I’m not homeless is, it’s a good thing. However, anybody, anybody can be homeless. So I’m grateful for what I have, but I never take it for granted that I won’t not have what I have, you know?
– Well Alex Miller, it’s been a great pleasure to talk to you.
– Thank you guys, that felt really good. I got something off of my chest too, so that was helpful.
– That was Alex Miller, a writer and US Navy veteran talking with us from New York.
– My name is Katie Prout, and we are on Osterman Beach in Chicago, Illinois. So right now I’ve also been looking for beach glass. That’s kinda what I’ve been particularly liking lately. The other day it was stormy and I came here anyway, and the waves were really high and washed up was like a giant pale lilac stone, like beach glass that had probably been in the lake for at least 50 years. That color is really rare, the size and shape of it’s really rare.
– Katie Prout is a Midwest-based writer. She often goes rock hunting on a Chicago beach along the shores of Lake Michigan. She says it keeps her sane, literally. Producer Mark Riechers walked with her one day.
– I think there’s something soothing about it. I don’t know if it’s like focusing intensely on something eventually makes your mind stop racing, but I was also like an extremely emotional little kid, and I thought rocks had feelings. Some rocks looked lonely to me, some rocks looked sad. And so I’d have to pick them up and carry them with me until I saw another pile of rocks that seemed like their family. And eventually it got so like, I could really only walk a few steps or half a block and then my pockets would start being filled up with rocks. So this is cool. I’m just like, this is one is red, and I love her.
– Rock hunting seems like a harmless pastime, right? For Katie Prout it’s been a coping mechanism, and it worked for a while, until she and her partner noticed it was morphing into something else. But when she tried to get help, she was met with so many obstacles. Her insurance was refused, a therapist ghosted her. It turned out finding medical care for her body was way easier than finding care for her mind.
– Early on in the pandemic we were living together in this teeny tiny bedroom with a bunch of other people. And at that time, hearing the waves, feeling the sand, picking up rocks that I thought were beautiful or like spoke to me in some way was like, I don’t know, affirming in some ways that all that was still here, and that I was connected and not just floating in space, which is how I felt in my head. February and March, Carter was just noticing the ways in which I would start to like, slowly stack up all the rocks. You know, I was sort of like lining the window sill, or balance them on the radiators, or I would fill up a little jam jar. And we were walking back from the beach one time and I remember he was like, “Okay, how about like five rocks?” And I’d have like fistfuls, one in my back pocket making my jeans slouch. He would like, tease me in a loving way about it, and also brought to my attention, like how much of it I was doing, like every day. But it’s one of those things that you feel vulnerable about. No, I need these. I just really couldn’t sleep well. I get night terrors, I get sleep paralysis. My body is unable to move, rigid, but my eyes are sort of open. And so I’m dreaming, but also able to see the room. It’s very frightening. What I need to do is yell to wake myself up, ’cause I can’t move to wake myself up. And so I’ll yell or Carter hears me start yelling, and then shakes me. You know, sharing a tiny room with someone who’s also kicking and yelling in their sleep and covering it in rocks, eventually you’re gonna be like, “Hey babe, what’s, how’s it going? Have you been diagnosed with obsessive compulsive disorder actually ever?” And I was like, “Possibly, I don’t know that that’s never a diagnosis I’ve been given.” My first step was trying to find therapy. The stamina that you need in order to pursue mental health treatment in general, insurance or not, good insurance, quote unquote or not, is really difficult. And if I had kids, if I was a single parent, I would give up. My experience was a ton of calling, a ton of websites that said they might take Medicaid and then you call and they’re like, “Oh actually we don’t,” or, “We’re all full up.” Or you kinda had to turn over the keys to your whole life in order to be part of that system, right? It’s meant to be wraparound, but it can feel paternalistic. The effort when you know that you’re not doing well mentally, when you’re in crisis or you’re getting close to it, to then have to sit down and look at your computer and do emails, is like no one’s idea of a good time. But then when you’re trying to do it in order to find care for yourself over and over and over again, and they don’t get answered or they do get answered with, “Actually we can’t help you.” Or what happened to me a few times, it’s like, “Yes, we do take that insurance,” or “Yes, we can do that. Yes, we will offer a psych eval.” And then when we got close to the appointment, you know, one place was like, “Oh, actually we don’t do psych evaluations.” And I’m like, “I confirmed twice in writing that you A, took my insurance and B, that this is what I wanted. This is the service I was looking for.” I had a therapist who I had an intake call with when I was searching for therapy who was like, “Yeah, I take Medicaid. Do you have suicidal ideation right now?” And I was like, “Yes,” and then she said, “Okay, I think we can work really well together.” And then she never called me or responded to an email again, which is very dangerous. And also just then you’re like , like, substance abuse disorders run in my family, right? And I’m like, you know what’s a lot easier, what I have a lot more access to? Booze, drugs and guns. I have access to that. And that again, doesn’t mean that people that are more mentally ill are like more prone to violence. It’s just, what is the easiest for people to get? I could get dope far faster than I could get any kind of psychiatric or psychological care and it would be effective. It might also kill me or cause grave, other complications in my life, but it is there. It’s not something that I have the energy to pursue every day or even every week. I’d spend like a few days or a week trying, you know, okay, now from like 3:00 to 4:00 is when I’m gonna make these calls or do this research. And I would do that and then I’d give up for like four or five weeks, because it sucks. Especially if you’re already applying for jobs, and not hearing back from applying for jobs. You’re like trying desperately to cling to the fabric of this capitalistic, stupid society that we’ve made. And you can’t, even if you’re trying to participate in it, even if you’re trying to play that game, the game doesn’t want you.
– That was Katie Prout, who took a walk recently with Mark Riechers, and told him about the cold hard reality of knowing you need help and not being able to get it. Still to come.
– I’m talking constantly with really compassionate, thoughtful, psychiatric researchers, and yet we’re missing the individual. That’s the source of the mess. We’re not seeing the human being in a full way.
– That’s coming up after the break. This is “Going for Broke”, a three-part special with the Economic Hardship Reporting Project, and “To the Best of Our Knowledge” from Wisconsin Public Radio and PRX. Daniel Bergner felt frustrated and helpless, back when one of his closest family members, his brother, was diagnosed with a serious mental illness. He also wondered about the psychiatric treatment his sibling was getting. It almost always centered on heavy-duty medications that could be dangerous, but also ineffective. So Bergner, who’s an author, decided to report on other possibilities for his brother’s healing, and also new chances for his brother’s, and thus his own life. Charles Monroe-Kane, who’s experienced parts of the brother’s dilemma himself, talked with Bergner.
– If COVID has taught me anything, or taught us anything, and I’m not sure in America it has, but it’s that the healthcare system just generally is broken, but it also seems that even more broken is the mental healthcare system. There must have been a moment in your life where you were like, “Ding, this is mess.”
– So I’d say there were two moments. One was back when my brother and I were in our early 20s, diagnosed, as he was, severely bipolar, he was put on a locked ward, our parents told he would well take his own life if he didn’t stick to medication. That didn’t sit easily for me. It wasn’t that I was rejecting all that our parents said and all that the psychiatrist said, but it just seemed too simple, too straightforward, for this thing that is our minds, our selves, our psyches. And then I guess when my brother and I talked about our embarking on this project much more recently, a few years ago, top end elite researchers told me again and again, “We haven’t made progress in our psychiatric medications in half a century.” But meanwhile, practitioners are doling out psychiatric drugs at increasing rates, and doling out psychiatric diagnoses at increasing rates. For instance, for kids, bipolar, recent decade, increase in that diagnosis, 40 fold.
– So something was clearly amiss. And I’m talking constantly with really compassionate, thoughtful, psychiatric researchers, and yet somehow we’re missing the individual in the way we think about mental health. And I think when you talk about a mess, that’s the source of the mess. We’re not seeing the human being in a full way.
– Well, speaking of the individual, we’re sitting here talking about economics, but we’re also talking about your brother. What was it like growing up with him? I mean, what’s he like?
– Amazing musician, really creative artist, also a dancer when he was young, and ambitious. And the side effects of the drugs prevented him from playing at the level that he was used to and with the nuance that he was used to. So a few years down the line, after adhering to what the psychiatrists were telling him, he went off the medication against advice. And yes, there were dark moments. He was arrested, he was put back on a locked ward. He was homeless for a while, and that was a really, really trying time. But the truth is, flash forward, he’s lived a really flourishing, meaningful life. That in itself raises questions about that doctrine that said, “Take your medication, here’s your diagnosis, here’s who you are permanently.”
– There was no permanence to this.
– Well, I’ll just say for myself, and I know a lot of our listeners know me know this, is that when I was young, I was diagnosed with schizophrenia that was later diagnosed as bipolar one. Somehow that was a celebration. I have taken so many meds Daniel, like just boatloads of combinations of meds. I’ve had so much therapy, so much psychiatry. I’ve been hospitalized a number of times, unfortunately some of them not voluntary. During all that, I would go to group therapy, and I will say I love group therapy. I find it to be powerful, I find it to be useful. Like right now I’m in Madison, Wisconsin. The folks in my group therapy right here, they’re a mess. And not just a mess mentally as they’re trying to figure stuff out, I mean, their lives are a mess. They’re often just divorced, addicted, but also a lot of them are on the border of homelessness. One is homeless. They’re 40 years old and still living with their mom. One woman’s selling her body. When I observe them and I observe their mental illness, the side effects and how it affects them economically is worse than the mental illness.
– Right, and indeed, 30 to 60% of those who are prescribed antipsychotics walk away from them. Conventional psychiatry would say, that’s because they’re disorganized, that’s because they don’t acknowledge they’re ill, et cetera, et cetera. I wanna say, maybe we oughta look at this as they’re voting with their feet, and on balance, they’re making a rational choice. Now again, you probably know this all too well, if you’ve got that diagnosis of schizophrenia or anything on that psychosis spectrum, practitioners are likely to doubt that you can make a rational decision. But what I’ve found-
– Yeah they don’t talk, They don’t talk to you at all.
– Exactly, but over and over, what I’ve found is, even when people are in crisis, even when they are engulfed in a, let’s call it an alternate reality, if I’m willing to sit there and listen, I’m still able to connect. And we are failing repeatedly, constantly, to just acknowledge that. That there’s much, much more communication possible than mainstream psychiatry acknowledges, and that’s when people are in their most challenged place.
– Which brings that to a question, I wanna go back to your brother, if you don’t mind me asking about him again. Is, there must have been a time where, maybe the first time, or maybe a different time where it was like, put away, serious. Everybody in the family knew it, it was very serious. And I’m wondering like, now that you observe back at that time, what do you think he needed? I’m assuming he didn’t get it, but what did he need?
– Right, so he and I talk about that all the time. I think he would say he needed someone who wouldn’t completely discount the ideas that he had, who would slow down and listen. And he actually, ironically enough, to some degree found this the second time he was locked up in a very unlikely place, because he was in a state hospital. It was really run down. It was kinda your worst caricature of, you know, the decrepit state hospital where people are forgotten. But he actually ran into a psychiatrist there who, although that psychiatrist urged him to go back on medication, my brother would not, also had some things to say that let my brother know that he was heard.
– And this part, when I do readings, I can barely get through without choking up. So my brother leaves that psych ward, he’s been arrested, and then he winds up in a homeless shelter. And his way of thinking of it is this. “Look, anyone on the outside would see me lining up for that free church basement food. Anyone on the outside would’ve seen me taking my one shirt to the shower every day to wash it and think, “This person is very, very, very down on his luck.” But my brother says, “I didn’t feel down on my luck because I knew no matter how long this took, I was moving away from what I felt was the imprisonment of this diagnosis.”
– There’s a moment in your book, I think it’s the Staten Island Ferry, but there’s a moment where you and your brother are on a ferry, and he starts dancing. And I think it’s later on in the book, it’s like he’s already gone through a lotta things. And I read that like three times in a row. Do you know what I’m talking about?
– I do.
– Do you have, could you read that?
– Sure, I’ll read a little bit, just to set it up, I just need people to picture. “He’s wearing a military khaki-colored jumpsuit, in combination with some little black Capezio dance shoes. The impact of the rough water against the bow created a steady, emphatic beat. And above that the engine delivered not only a churning rhythm, but something bordering on a melody, deep and ancient like a Gregorian chant. It was a small part of my brother’s gift that he both heard this music of water and machinery, and allowed himself to be inspired and electrified by it. He lifted one foot to knee height, then leapt high off the other and landed on the first foot, so that there was a simultaneous vaulting and transferring of weight, followed by a reversal and more repetition back and forth, melded with the strivings of his torso and arms, amounting to movements at once airborne and sinuous. To the few passengers who watched from their cars, his mix of military jumpsuit and elfin shoes may have looked odd, compounding the oddity of his dancing. But all of this strangeness was countered by the broad solidity of his body, and by his resistance to the sporadic lurching of the boat, which should have pitched him off balance and made him grab at the chain poles or brace himself against a car, but never did. He hung in the air, stomped his heels on the steel deck, sprang from side to side, spun and elevated again, athletic, animalistic, ethereal, impelled by the pulse of the water and the echoes of medieval worship. And soon he was on a psychiatric ward with a heavy dose of Haldol seeping into his brain.”
– Sorry, um. Anyway, give me one second, okay? Well first, thank you for writing that. I think that when I read the book, one, I realized you love your brother, and that’s beautiful. But also I think you were celebrating people who are mentally ill. And in that moment in that book, I was prescribed that medication once, and I think I was probably acting a little, quote unquote, outta control before I was given it. And then I was quelled, right? And became part of good society. You spent so much time with your brother writing this book. What does he think of it? What did he think of a passage like that? Did he make fun of you, or did he like it, or what did he think?
– Well first, thanks. I mean, I’m glad we connected over that passage, ’cause it’s so important to me, important to my brother. I think he appreciated that I was trying to see, feel, hear my way into his way of seeing and feeling and creating. And he was creating, right?
– Oh, I know.
– I mean yes, he was outside the bounds of social comportment. I mean, he was dancing on a ferry deck. But there were at least a couple times when he did this, and I was there for one of them. And I remember, you know, I’m sadly much more conventional and a part of me was a little embarrassed, but a part of me was kind of in awe, because he’d been inspired.
– And I was just a bystander to that inspiration.
– I know this is a dangerous question, and I’ve been asked this question a number of times in my life. I’m very manic inside of my mental illness, which means, you know, I’m a white straight guy who’s manic. You can get a lot done in the world, even though you’re tired at the end of it. Is mental illness, is it a gift?
– Well, I wouldn’t even use the word illness.
– All right, there you go, right?
– I’d go a little more radical.
– Go for it, man.
– One of the things that shook me was the frequency with which some psychiatrists, certainly not all, were unable to see that.
– So once, I’ll give you an example. You know, I was invited to a little kind of salon, soiree, and all very ego-affirming for me. We were gonna talk about one of my books, and it happened that there were several psychiatrists at that table. And this psychiatrist said rather proudly, “I almost never see a patient for whom I don’t prescribe medication.” And so I said, “Let’s take Hemingway just for an example. Here’s your trade off. And I know,” I said to the psychiatrist, “I know this a little sophomoric and simplistic, but here’s the question, you can have a couple of the greatest novels in American literature, and some of the greatest stories in American literature, but have your patient kill himself at age 60. Or you can medicate that patient,” ’cause a lot of people think retrospectively Hemingway was bipolar.
– “You can medicate that patient from the time he’s 20, but you are likely gonna sacrifice those great works of literature. He’s not gonna quite produce at that level.” And what struck me was, this psychiatrist didn’t even pause. He just said, “Of course I would medicate.” And I’m thinking the opposite. I’m thinking, look, I’m right around that age. I’m thinking, “You give me that trade off, I will end sadly and devastatingly as the trade off for having written art at that level.” Now again, this is simplistic, but it just shows you something about that worldview that wants to control, and control and creation, kind of opposite forces.
– That was Daniel Bergner, author of “The Mind and the Moon, My Brother’s Story, The Science of Our Brains and the Search for our Psyches”, talking with Charles Monroe-Kane. Still to come.
– It could be you that’s injecting, it could be your kid. And all of us are valuable, so let’s keep us alive. Harm reduction is really about radical compassion.
– That’s coming up after the break. You’re listening to “Going for Broke”, a three-part special with the Economic Hardship Reporting Project, and “To the Best of Our Knowledge”, from Wisconsin Public Radio and PRX.
– Okay to be told that I had cancer was just, it just turned me around.
– Bobby Campbell is fighting for his life.
– I was injecting drugs in New York City in 1985 and 1986.
– He has Kaposi sarcoma, a deadly skin cancer that first appeared on the bottom of his feet as-
– This is Maia Szalavitz.
– There is a one in five chance a victim will die within the first year of the illness.
– I did not know that I was at risk for HIV. The headlines was always gay men. I wasn’t a gay man, so I didn’t worry.
– This country doesn’t know about this cancer.
– Well, I think it’s because it’s a gay cancer.
– I was sitting on a couch in a friend’s apartment, and he went out to buy drugs for us. A friend of his was visiting from San Francisco, and she said that if we were gonna inject, we were at risk for HIV, and that ideally you shouldn’t share, but if you had to, you should clean your works with bleach twice and water twice, at least.
– And the Centers for Disease Control in Atlanta-
– Given that I was injecting coke dozens of times a day at that point, as well as heroin, I was horrified and shocked.
– Targeting the immune system.
– I was also just infuriated and enraged that I didn’t know this and that I could die from ignorance. This just pissed me off on many levels. So I began trying to get the word out there about this, and then I was further enraged, that not only did people not want that information out, they wanted to ban bleach programs, even though bleach is totally legal. I’m the child of a Holocaust survivor, so I’m very sensitive to dehumanization. We see people who use drugs is just subhuman, and the only thing we’re good for is like, to die and be an example to kids who are salvageable.
– How long before he and others who have this disease finally have the hope of a cure?
– Maia Szalavitz is a gifted thinker, and an expert in addiction. She’s also someone who’s experienced drug addiction personally, dealing cocaine and using heroin as a college student and a young woman. It was during that time that Szalavitz came upon a concept that’s only now changing how we think about drugs and addiction on a mass scale, harm reduction. She encountered it not just in the many books she read, but then she lived it in a single moment when her own life was saved by it. 30 years later, the world is finally catching up with her. Alissa Quart, who knows Szalavitz very well, talked with her.
– All I knew was that she was a white woman, and she was a friend of my friend Dave’s, and she was in San Francisco and she knew about bleach in 1986. It turned out that she worked for the consortium that developed San Francisco’s bleach program. San Francisco really before New York, they recognized that people who used drugs were gonna die of AIDS, and that they needed to do something about it. In fact, the way that was discovered was by a woman who worked for this organization, and one of the young punks that she was studying said that there was this needle in a little spot behind a brick in the wall of the famous punk club that is in Jennifer Egan’s book. Basically, people would just go to this brick, they would take it out of the wall, they would use a syringe, they would put it back. The woman’s name is Sheila Murphy, and she was like, “Oh my God they’re gonna die, we have to educate them.”
– What you’ve described is incredible. I mean, this woman saved your life, and harm reduction saved many people’s lives back then. But what is harm reduction?
– Sure, so harm reduction is the idea in drug policy that we should focus on reducing harm rather than on stopping people from getting high.
– So it starts with HIV prevention, like the mid ’80s let’s say, or early ’80s?
– Yes, what happened was that in the world of public health, syringe exchange was an enormously effective intervention. It’s actually easier to get someone who uses drugs to use a clean needle than it is to get a man to use a condom. And so it was sort of a reversal of the traditional way of doing things in the drugs field where everybody was really focused on, the only thing that matters is stopping the drug. And what our horrible policy that just cuts people off of medical opioids and doesn’t provide any help for them, whether they have pain or addiction or not, that increases harm. We have a policy of harm production at the moment. The sick thing about our country right now is, we are totally willing to spend billions of dollars and waste billions of dollars on punishment, because we’re afraid that one person who’s undeserving might get help. And the harm reduction folks realized that actually, you know what? Most people in general care more about whether people get hurt than whether they get high.
– So you’ve written a lot about different minds. Let’s just call them different minds. Not just addiction, but people on the autism spectrum, and including the neuro divergent. But what do you think of having had this different wiring yourself in a range of ways? Not just drug misuse, but also you define yourself as being on the spectrum. What has that taught you?
– Absolutely I mean, I really didn’t understand addiction til I understood that I was on the autism spectrum. Very early on I was just weird. You know, I was like reading at three. I was constantly overstimulated, and it was just like, my senses were just tuned way too sensitive. I eventually learned to manage my problems, first by drugs that are currently prohibited, and later by drugs that are less prohibited, AKA antidepressants. But also, I developed this enormous amount of self-hatred because I just thought I was selfish and bad. When I understood, okay, I’m behaving like this because I’m on the spectrum and I’m overwhelmed, then I could hate myself less and then I wouldn’t need the anesthesia from the drugs. Being on the spectrum and being, you know, a person who just has a crazy overdrive nervous system, it can be your superpower and it can be your downfall.
– But I mean, I think what’s interesting to me always about you Maia, is that you’ve also had multiple class positions. You went to Columbia, and then you dropped out, ’cause you were dealing and using. You struggled economically, you were a freelancer. I mean you had debt, and now you’re out of all that. But I feel like you have a lot of sympathy for people who are damaged in that way, as well as debt, as well as addiction, and that there’s a tendency for people who come from relatively elite backgrounds to not always understand that, right? And how do we do harm reduction around class contempt?
– Yeah, well I think one of the things that I’ve written about in the past is how inequality is corrosive to relationships. It’s always seemed to me weird that there are people who would rather live in a castle guarded by guards on the top of a world that’s a garbage heap, than share. And I think part of the reason we have such a negative attitude towards homelessness, for example, is that we’re terrified that could be us. And so we have to distance ourselves psychologically and say, “Oh no, they did something wrong. They’re bad, they’re irresponsible, they chose this.” To feel okay being economically secure, a lot of people tell themselves, “Oh, I deserve it, I earned it, I worked hard for it.” But yeah, there’s a zillion other people who worked hard and didn’t get it.
– So how does it factor, social class and where you were born, factor into who gets to recover from addiction, or who gets to be taken seriously when they’re on the autism spectrum, and seen as a potential voice rather than somebody who never will be employed?
– I am certain that being white and middle class and female had a large amount to do with the fact that I didn’t go to prison for 15 years for cocaine dealing. I would often sit in that courtroom, because one of the things a good lawyer does is delay and delay and delay when you have a case against you. And I would just go for all these court dates, and I’d be the only white defendant. And somebody who is poor or a person of color, the stakes for them of coming out about addiction or something like that are much higher than they are for me. And so I knew that having been spared the horrors of incarceration that I had to, I was ethically obligated to speak out.
– I do have to ask at some point though, when does harm reduction become a problem, in the sense that it’s letting the powers that be off the hook by allowing a half-measure or private solution? I mean, even in the instance of bleaching needles, that it had to come from a community organizer, social worker, somebody that was working for an NGO. That becomes the answer instead of something more systemic, right?
– Yeah, yeah, I mean, that was one of the biggest objections of Black communities to the harm reduction thing during AIDS. They were like, “Oh, you just wanna give us needles so that we can just shoot up. You’re not gonna give us actual residential treatment.” And the answer is, you have to do both. People are dying now. Like you can’t say, “Okay, we’re gonna wait till we solve homelessness to keep you from getting HIV or hepatitis C.” There may well be systemic situations where doing a little bit is a sop, and prevents larger change. I have not seen that in the harm reduction area. Like in the drugs area, it’s very clear that if you do something like, “Okay, we’re gonna give people heroin,” actually what happens is they don’t stay addicted longer. They stay alive longer. Harm reduction says, “You know, it could be you that’s injecting, it could be your kid, and all of us are valuable, so let’s keep us alive.” Harm reduction is really based on that. It’s really about radical compassion.
– That was Maia Szalavitz, author of “Undoing Drugs: The Untold Story of Harm Reduction and the Future of Addiction”, talking with Alissa Quart. If you or someone you know are having mental health struggles, we wanted to make sure you’re aware of some resources. The National Suicide and Crisis Lifeline is available 24 hours a day by calling 9-8-8. NAMI, the National Alliance on Mental Illness, reminds us that one in five people in the US has a mental health concern every year. You can find support and education at their website, nami.org, that’s N-A-M-I dot org. “Going for Broke” is a collaboration between the Economic Hardship Reporting Project and “To the Best of Our Knowledge” at Wisconsin Public Radio and PRX. Our executive producers are Alissa Quart and Shannon Henry Kleiber with help from Steve Paulson, Anne Strainchamps, Charles Monroe-Kane, Mark Riechers, Angelo Bautista, and Sarah Hopefl, with additional help from David Wallace, George Lozano, and Deborah John Lee. Our logo is by Penny Blatt Design. Our sound designer and technical director is Joe Hardtke, and I’m Ray Suarez. To hear the rest of the series, go to ttbook.org, economic hardship.org or look for it on your podcast feeds. Thanks for listening. PRX.
Co-published with PRX’s To the Best of Our Knowledge.