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Mad Journeys Into Mental Health

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An Evergreen College student involved with the Icarus Project during Mad Pride Week, June 2009. Credit: theicarusproject.net

About one in four adults in the United States suffers from a “diagnosable mental disorder” in any given year, according to the National Institute for Mental Health.

But some Americans don’t find it useful to label their psychological experiences as ‘disorders.’

On this edition, we hear from people who say they have ‘dangerous gifts.’

They tell us about their experience with mainstream mental health care, and how they say they are navigating the space between brilliance and madness. We also look at some alternative  models for care.

Special Thanks to Ken Paul Rosenthal.

Featuring:

Audio from the film Crooked Beauty by Ken Paul Rosenthal, including Jacks Ashley McNamara, artist and co-founder of the Icarus Project; Sascha Altman Dubrul, co-founder, Icarus Project; Abdikhadir Mohammed, Somali refugee; David Schuchman, Minneapolis-based clinical social worker who works with refugees; Abdulai Mohammed, Minneapolis mental health worker; Muktar Gaaddasaar, Somali language radio host on KFAI; Rashid Guled, Somali youth counselor.


Sascha Altman Dubrul on the Icarus Project

When Jacks Ashley McNamara read someone’s personal account of their journey with “madness,” in the newspaper, McNamara was compelled to write the author. That person was Sascha Altman Dubrul. The two co-founded the Icarus Project, a network of people in the United States supporting people living with what are commonly diagnosed as psychiatric disorders. The website – Icarusproject.org,  provides research, online forums and resources for support groups so that people can cultivate and care for their own psychological experiences. I recently sat down with Sascha Altman Dubrul in his house in Berkeley, California to learn more.

The Mental Health Challenges of Refugees

In many parts of the world, concepts like depression or schizophrenia are not well understood. It’s a particular problem for refugee populations in the United States. They often come from war torn nations, fresh from traumatic experiences and present a special challenge to the Mental health system. But since the 1970’s some creative solutions have emerged. Making Contact’s Andrew Stelzer brings us this report from Minneapolis, where the largest Somalian community in North America is working together to bring some of their own skeletons out of the closet.

For More Information:

 

Community University Health Care Center
Minneapolis, MN

Crooked Beauty – The film

Egal Shidad: Stories of Somali Health for Radio, TV and Classroom Use

The Icarus Project

Jacks Ashley McNamara

Oakland, CA

Ken Paul Rosenthal

KFAI Community Radio

Minneapolis, MN

Music:

Bonfire Madigan Shive

 

Episode Transcript

[MUSIC PLAYING]

  • This week on Making Contact.
  • There would be a lot, a lot less “mental illness,” quote unquote, in our society if people were given spaces to work through emotions like anger and grief, instead of denying them and suppressing them.

  • About one in four adults in the United States suffers from a diagnosable mental disorder in a given year. That’s according to the National Institute for Mental Health. But some Americans don’t find it useful to label their psychological experiences as disorders. On this edition, we hear from people who say they have dangerous gifts.

They tell us about their experience with mainstream mental health care and about how they say they are navigating the space between brilliance and madness. We also look at some alternative models for care. I’m Pauline Bartolone. And this is Making Contact, a program connecting people, vital ideas, and important information.

From a young age, Jacks Ashley McNamara was acutely sensitive to the world and had a troubled home life. At age 19, McNamara was locked up in a psych ward, with very little access to the natural world. McNamara was given a diagnosis and medication. But the Oakland, California based artist questions mainstream mental health care. In this excerpt of the short film, Crooked Beauty, by Ken Paul Rosenthal, McNamara talks about journeys through dark places to self care.

  • At a very young age, I started to really lose interest in a lot of the strappings of popular culture, all these messages about the kind of person I was supposed to be. The world around me it was way more interesting than a television show. And what everybody talked about on the bus to school was movies and celebrities. And I just didn’t care.

I wanted to talk about love and loss and life and the meaning of human existence and spirit and. Unity and freedom. And that was just not with 12-year-olds were talking about I grew up in a really dysfunctional, neglectful, and pretty abusive alcoholic family. And I was not supposed to talk to anyone about what happened in my house. The kids at school wanted to talk about Grease. And what I was thinking about was the horrendous way I was being treated by my mother and how desperately I hoped for some kind of free life.

I was pretty malnourished as a kid, because I was allowed to eat whatever I wanted and no one took care of me. And so I didn’t grow. And so I looked like I was eight. And I lost all my friends. And then I would go home and nobody would talk to me and my mom would be like falling apart on the floor, passing out after drinking a bottle of wine, yelling and screaming. And my entire reality was dismantling itself

I wanted to get out of my body and out of my life so badly. And I just started to have this feeling that probably one day I was really going to go crazy. I went to a prestigious private university. And at the time, I was taking a class on the origin of life in the universe. And got totally convinced that if I could teach every high school student in America that their bodies were made out of molecules that were born in the supernovas of stars 15 billion years ago, then we would all understand that we are all the same and there would be no injustice and no inequality and we would stop treating each other so badly.

And so, I’d gone through a period of just total expansion and incredible energy, and so much insight, but insight at a level where I couldn’t really connect with other people. Your brain takes off into this level of cosmic and cerebral connections, but your heart isn’t working quite right. You can connect 50,000 ideas, but you can’t listen to your friend talk about her relationship.

And so I went through a period which they would say is mania, all mental energy and connections and divine expanses of space and time and no grounding on the Earth. And then I crashed, really badly. And a lot of it for me was mixed up with drugs and alcohol.

I slipped into such a state of total and utter depression and despair that I didn’t know what day it was. I didn’t shower. I didn’t change my clothes. I didn’t really eat. Stopped going to school. Stopped doing work. Stopped going outside. Stopped talking to people.

Every time I try to watch the television, I was convinced that the world was ending and I would run out of the room screaming and shake and hide in the corner. And I was snorting Ritalin so I could write my final exam papers and then blacking out on the floor. Finally, my girlfriend ended up calling my parents. I can’t take care of your daughter anymore.

My parents didn’t want me to go to the hospital. They thought I should just be able to get over it. My mom and I had a huge fight. And my dad was screaming at her in the kitchen, and asked her if she could say that she loved me without saying but afterwards and she couldn’t do it.

Then I just totally lost it, visualizing like picking up a kitchen knife and stabbing it through my heart. Part of me really wanted an answer that left me off the hook as far as responsibility went. And being told that I had a mental illness was both horrifying and very conveniently let me out of responsibility for my life.

And it enabled me to recast everything that had happened to me up to that point as a result of this mental illness. Part of me hated that and part of me was totally relieved. Because then it was just like, oh, that’s why it’s all been so hard. You know, I’ve just got this brain disorder. But I don’t think that’s actually the whole answer at all.

There’s this fundamental impulse either towards suppressing our traumas by medicating the symptoms of them away or facing down our traumas, quote unquote, by delving straight into the teeth of whatever our childhood beasts are. There’s not a lot of focus on what is in the middle. What does it mean to acknowledge the way that the past has been a formative thing in our lives without reliving the past over and over.

Mental illness does not exist in a vacuum. Saying that it is nothing but a biological brain disorder lets everybody off the hook and makes it the situation where it shifts the individual versus his or her inevitable biological madness. I think that a lot of people who get labeled as mentally ill in our society have really broken hearts. A lot of the behaviors and the attitudes that I had before I got locked up in a psych ward and given a diagnosis had a lot more to do with trying to escape from my sadness than I think they necessarily had to do with a mental illness.

If I was determined to live my life in a city and to work a really intensive steady job in an office, I think I would have to take medication to do that. But I don’t think that fact means that I have a disease. It means that it would take a pharmaceutical substance to override my instincts, to make me capable of fitting into a system that was not designed for someone with a spirit like mine.

  • You’ve been listening to this story of Jacks Ashley McNamara, an excerpt from that film called Crooked Beauty by Ken Paul Rosenthal. For more information about the film, visit CrookedBeauty.com.
  • When Jacks Ashley McNamara read someone’s personal account of their journey with madness in the newspaper, McNamara was compelled to write the author. That person was Sascha Altman DuBrul. The two co-founded The Icarus Project, a network of people in the United States living with and supporting others with what are commonly diagnosed as psychiatric disorders. The website, TheIcarusProject.net provides research, online forums, and resources for support groups so that people can cultivate and care for their own psychological experiences.

I recently sat down with Sascha Altman DuBrul to learn more. I wanted to ask you a little bit more about why The Icarus Project is called The Icarus Project. What’s the story behind that?

  • So Icarus was this boy in Greek mythology who had wings and he didn’t know how to use them and ended up flying too close to the sun. And in the story in Greek mythology, he drowns in the ocean. When Jacks and I met, we both were really inspired by the Icarus story. Because we saw that we were both people who had these what you know what were considered diseases or disorders.

But actually if we revision the story and saw ourselves as having these dangerous gifts, it gave us so much more power in our lives to be able to talk. So the whole idea of The Icarus Project came out of this vision of redefining mental illness into something beautiful and creative.

  • So you have a critique of mainstream psychiatry’s method of defining and treating what they call mental illness. And you specifically challenge that idea of biopsychiatry. Why does biopsychiatry not work for you?
  • When we talk about biopsychiatry, there’s really the dominant paradigm, like the dominant way that that gets shown to us from the television shows that we watch and from everything that we see on the internet, and just the way, when you walk into your doctor’s office, it’s all about brain chemicals and brain chemistry. And what we’re saying is that there’s this whole wide world of other factors that end up having an impact on our well-being.

Whether it be our family, whether it be the political situation, whether it be the economy, you know, whether it be existential dilemmas about why we’re here. These are all different aspects of what feeds into how we end up feeling about ourselves as people. And the convenience of the biopsychiatric story for the system that we live under is that it doesn’t give us any space to talk about larger issues of well-being that might be tied to politics or to society or to issues of gender and race and class and all of these things that have such a big impact on all our lives.

  • So you recently wrote an article called unraveling the biopsychiatric knot, the future history of the radical mental health movement. In it, you talk about the rise of neoliberalism and biopsychiatry and about how they are united as a paradigm that affects our lives even today. So how exactly do these two schools of thought play off each other and how does that affect us?
  • In the 1980s, with the rise of neoliberalism, what happened basically was that there was all of this, there are all these things that were public that began to be privatized. And the whole idea of there even being a collective good was called into question. You know at the time, Margaret Thatcher was saying that there is no such thing as a community, that we were all just individuals.

And so it’s really important when we look at modern psychiatry to see that it came of age in this time of individualism and this rise of free market capitalism. When you want to talk about biopsychiatry, you have to talk about it in this political context. And if it’s taken out of that political context it doesn’t really make any sense, why all of a sudden we’re talking about mental health as this individual, this individual phenomenon of brain chemicals, when in reality, mental health is a collaborative process. We are mentally healthy or mentally sick all very much having to do with the world around us and how others are doing.

  • We’ll be right back. You’re listening to Making Contact, a production of the National Radio Project. If you’d like more information or for CDs Copies of this program, please call 800-529-5736. Because of listeners like you, this show is distributed for free to radio stations in the US, Canada, and South Africa. To find out how to support us, download shows, or get our podcasts, go to radioproject.org.

We now return to an interview with Sascha Altman Dubrul, co-founder of The Icarus Project.

You also said in the article that the idea of sadness as being a problem of brain chemistry fuels the market-based economy.

  • Well, you know the market economy is based on dissatisfaction. If people are satisfied, if people are happy, then you know, they’re not going to feel much of a need to go to the store and buy stuff. They’re not going to just sit there on television. And one of the scariest parts of the modern consumer culture that we live in is that when you dig underneath the surface of it, it becomes clear pretty quickly that its foundation rests on us being unhappy.
  • So I guess as far as treatment for people who may be suffering psychologically, whatever you may call that, what kind of treatment models would you say are desirable and are you opposed to people taking psychiatric drugs?

  • Oh, no, well, let’s be really clear about this. I take psychiatric drugs. I’m diagnosed with what in the modern language is called bipolar disorder. And I take the classic treatment for it, which is called lithium carbonate. And it’s actually quite helpful for me.

Now, it works for me. And one of the things that you can see on our discussion forums in talking about psychiatric meds, is that people have such different responses to the drugs. You know and some drugs work really well for people and some drugs really don’t. And one of the things that we did, which was really helpful was we created this space that hadn’t really been there before for people who were critical of the psychiatric system, to talk about their experiences and have respect for each other. You know well, those drugs work for you, they don’t work for me.

And I think in general what we put out there with the organization is that, for people who don’t want to be on psychiatric drugs, we want to help them get off those drugs. But fundamentally, the question comes down to, what kind of support structures do we have in our lives, whether you’re taking drugs or you’re not taking drugs, whether you have a psychiatric diagnosis or you don’t, you know, everyone needs support. One thing that I think is really, really important in the society that we live in is that people have their chosen family and that they have people who have their backs.

We’re living in times now where you know with the rise of social networking sites, you can look at Facebook and see the hundreds of friends that you have on there. But then if you were really in a crisis, how many of those people would actually be there for you? And that’s something that at The Icarus Project we spend a lot of time talking about.

What does it really mean to be a friend? What does it really mean to be supportive? And how do we create these kind of networks? And you know, it’s one of the key pieces of the equation is that we have to understand for ourselves what our needs are. Because if you don’t understand what your needs are, you have a really hard time explaining it to other people, what they need to do to help you. And so you know, something that we do is we create these maps, some people at Icarus call them mad maps or wellness maps.

And it’s these very basic documents. What are the things that I need to do to take care of myself every day? So the biopsychiatric model is an illness based model. It’s a model that looks at how are you sick and then what can we do to make you healthy? You know, but if we were to approach it from the opposite direction and say, what do I look like when I’m healthy? You know?

That’s actually that’s a really important question. Because for a lot of people, it’s very hard to answer. You know but you can look at the healthy ways that people create their chosen community. And there’s probably a lot there for the future.

  • You’ve been listening to an interview with Sascha Altman Dubrul, co-founder of The Icarus Project. Check them out online at TheIcarusProject.net.

In many parts of the world, concepts like depression or schizophrenia are not well understood. It’s a particular problem for refugee populations in the United States. They often come from war torn nations, fresh from traumatic experiences and present a special challenge to the mental health system.

But since the 1970s, some creative solutions have emerged. Making Contacts’ Andrew Stelzer brings us this report from Minneapolis, where the largest Somalian community in North America is working together to bring some of their own skeletons out of the closet.

  • Abdulkadir Mohammed’s wife was killed during the Somali Civil War. Before he could escape and come to Minneapolis, he was separated from his three children. It’s been more than 10 years since he’s seen them and it’s taken a huge emotional toll.
  • It’s a little bit hard life here and the stress is coming from there and sometimes and [INAUDIBLE] going to tell it to everybody that you just put it in and the anger is always inside of my heart.

  • To keep the anger inside, he began to drink.

  • Every day I was drinking like liter of vodka. And I had done a lot of problems from back home.

  • Abdulkadir Muhammad got into a detox program where they tried to treat his alcoholism, but didn’t address the trauma at the root of the problem. And his story is all too common in the Somali community. Most refugees have had relatives killed or raped and many watched it happen. Studies show rates of post-traumatic stress and depression could range as high as 100% in the population. But according to Minneapolis Mental Health Worker Abdoulaye Mohammed, it’s hard to even know how to ask for help because in the Somali language words to describe mental illness don’t even exist.

  • In the Somali culture, mental illness is viewed as either/or you either have or you don’t have it at all. You’re either sane or insane, nothing in between.

  • There can also be a misunderstanding of the symptoms, sleeplessness, appetite change or weight loss or gain, can all be signs of depression or post-traumatic stress disorder. But they aren’t always perceived as such. David Schuchman, a clinical social worker who works with immigrants and refugees says getting a grant to provide mental health services to Somalis was the beginning of his own education.

  • We went to a Somali elders meeting to publicize that we had these services. And in short, what I said was that we have services for people who have any mental health problems or mental illness. So if you know anybody, you can have them call us. What I learned very quickly after that by Somali colleagues that I worked with was that what they heard was, the concept of, what they heard was, if you know any crazy people, call David.

So once I learned that, I went back to elders meetings and other meetings, and then just talked about the symptoms. So we went back and said things like, if you know anybody who feel sad a lot, who’s tired, has body pains, we have specialists who can help them with these kinds of things. And then people were much more open about it.

They’d say, I felt that way sometimes or my wife feels that way or my cousin. And then people started coming and we started helping people.

  • Minnesota has between 50,000 and 75,000 Somalis. But because so many are dealing with trauma themselves, there are very few Somali mental health practitioners. That means treatment that’s culturally appropriate and even in the right language can be hard to come by. So others in the community have stepped up to help. There is a really taboo within the Somali community about certain ailments, including mental illness. And what happens is, the person with mental illness is isolated.
  • Mukhtar Gardasaar, who hosts a Somali language program on KFAI radio in Minneapolis helped produce an hour long video featuring folkloric character, Egal Shidad, a refugee who becomes mentally ill.

[SPEAKING SOMALI]

  • Egal Shidad is a well-known character in Somali folklore. The video puts this kind of insecure, bumbling man in modern day America as a refugee living with his family suffering from depression.

[SPEAKING SOMALI]

  • In the video a guy lies around all day. He refuses to go out and is afraid. One relative says his problem is caused by Jiman, the devil, and a traditional ceremony will fix the problem. Another in the family disagrees, saying that Allah must be trusted to deal with the problem. But she also says nowadays doctors treat both physical and psychological ailments. There are psychiatrists who deal with mental illness.

[SPEAKING SOMALI]

  • The video is a huge hit. People have called asking for it from at least 24 states and 12 countries. The video includes an interview with an imam, a religious leader, urging people not to hide their illness, to try prayer. There’s also a traditional healer, Zahara, who explains some ways to tell if people are struggling with mental illness. The goal is to bridge the culture clash that’s taking place in the home.

And there have been two more Egal Shidad movies made as well, one focusing on sexual health and a third on strengthening relationships between parents and kids. Somali youth counselor, Rashid Guled, says being a teenager is tough enough. Imagine being a refugee too and a racial minority in a new country.

  • Society looking at them a different way combination of that, of [INAUDIBLE] the religious, the clothes they wear, the language, all that can cause them having a problem and stress. And that can contribute to what they had already experienced, maybe a war or poverty.
  • Guled says it’s also critically important to educate American school teachers about the cultural adjustments their Somali students are going through.

  • Somali students have been kicked out of the school, misdiagnose it by social workers or psychologists, saying that he is a bipolar or is an adjustment disorder, or is probably depressed, which is not. It is just a confused child come from a home which is taught in a different than the environment of the school.

  • Understanding the importance of family is also crucial to treating Somali families. And according to Schuchman, that’s true for many cultures,

  • For example Somalis and Latinos have very strong sense of family and extended family. So when I started doing mental health work 30 some years ago, my client was the person who came to my office. Well, in the last few years, sometimes I have one person who is identified as the person who is getting help, but sometimes they bring three or four people with them and it’s cousins or neighbors and this is their family. So I’ve had to adapt my thinking about who my client is.

  • There are a few institutions in Minneapolis that have put a lot of effort into building a safe, effective program to treat the problems refugees bring to the table. At the center of that effort is the Community University Health Care Center.

  • They just returned for me this [INAUDIBLE].

  • Here, family is involved in group therapy sessions and about 50% of the employees are people of different cultures. So a patient coming in has a good chance of finding staff they can relate to. In addition to mental health services, the Center provides legal advice and other troubleshooting. Today case manager Abdoulaye Mohammed is speaking with the struggling alcoholic Abdulkadir Mohammed about an eviction notice he’s received from the county.

  • I was told the fourth is the last day.

  • Today [INAUDIBLE].

  • Abdulkadir says he still struggles. But with the help of group therapy sessions, he rarely if ever drinks. And he’s glad he doesn’t have to rely on the big hospitals, who simply give out medication.

  • They just give you the tablets and something. And then it’s quite little bit difference. But here you’re seeing somebody who’s love you.

  • For Making Contact, from Minneapolis, I’m Andrew Stelzer.

  • And that’s it for this edition of Making Contact. Special thanks to Ken Paul Rosenthal, music by Bonfire Madigan Chive. For more information, check out our website at radioproject.org. Thanks for listening to Making Contact.

[MUSIC PLAYING]

 

Author: Radio Project

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