Justice at Both Ends: Preventing and Treating Psychotic Disorders through Social Justice

Introduction

It seems like a cruel joke. People who are already in disadvantaged positions are, on top of that, vulnerable to brain disorders. Then, the society that produced the disadvantage (poverty, racism, sexism, etc.) stigmatizes the person for having an illness.

I want to be transparent here. I am diagnosed with schizophrenia. I live openly with my illness. I am also trained as a philosopher. I had my first psychotic break in graduate school, where I was studying ethics and political philosophy. My doctors told me to apply for disability, but I wanted to work. After a series of various jobs and hospitalizations, I finally applied for—and was granted—SSI. The day I was granted SSI, I cried. It had been an extremely rough ride.

One of the jobs I applied for, and kept until I was hospitalized, was as a case manager. As a case manager, I was trained to treat people in a holistic way. I was to look at each client from a variety of perspectives. But, also, I was trained to advocate for justice for my clients. That’s what I want to focus on here.

Theory and Practice

I want to set aside the theories of justice we learn about in school for a minute, however important and interesting they are. Although my academic training is mostly in philosophy, I have also done an assortment of different work. I have had time to think about—and live out—the issues I am discussing. So I’m not going to apply any certain theory of justice to the problems I am discussing. Besides, Bernard Williams would think applying a theory to a problem the way that is often done would be really uninteresting. And, of course, I want to be interesting.

I am also not going to get into a debate about psychiatry versus psychology. Brain versus mind. I think training as a case manager was good experience for me in diffusing that dichotomy. I am trained to deal with both medicine and psychotherapy, as a case manager. And I am trained to think about the soul and the brain, as a philosopher.

However, I am going to refer to schizophrenia as a brain disorder in this paper. Because that’s what it is, whatever, ultimately, causes it. There is something going on differently in my brain when I am psychotic. I’ll set aside issues of dualism, materialism, and so forth, and let other philosophers better trained in that area deal with those issues.

I am also going to set aside cultural differences. Although there has been interesting anthropological work on the differences in the expression of psychosis, there is also consensus that psychosis occurs in every culture. What I will focus on, however, is treating psychotic disorders in the United States. That’s where I live and am best trained.

“What happened to you?”: Social Causes of Schizophrenia

We know that social factors can be a cause in brain disorders. For example, Holocaust survivors are at an increased risk of developing schizophrenia. There is, we may say, only so much a mind can take.

This does not discount other factors involved in developing brain disorders. However, I want to discuss various abuses and forms of disadvantage at play in developing psychotic disorders.

Prior to taking up research specifically on psychotic disorders, I did a great amount of research in Native Studies. Native Studies is an interdisciplinary field, and I had to learn and read in many different fields—anthropology, psychology, sociology, history, law, criminal justice, philosophy, to name a few. In the social and psychological work I read, it was clear that the effects of colonialism had an impact on the minds of indigenous people. They are at an increased risk for many illnesses, including brain illnesses.

This informed my early notions of brain illness: that it’s mostly social. So, when I became ill, I didn’t know what caused it. (It could be, however, that I have, in fact, experienced a lot of hardship, and was prone to developing a psychotic disorder.)

I eschewed psychotropic medications, and psychiatry in general. I was held, for periods of time, in hospitals and told to be “compliant” (to take medications). I sought out therapy, however, and had a few wonderful counselors. Counselors, I knew, treated things differently. They are not medical doctors shoving, as it were, pills that caused me horrible side effects down my throat.

Eventually, however, I was given an antipsychotic that both managed my symptoms and didn’t cause side effects. I am now a firm believer in taking the appropriate medication at the appropriate dosage, along with therapy, case management, and so forth.

One of my good friends, who, for reasons to protect them, will remain anonymous and vague, works for the military. This is not a delusion. They really do work for the military, and they are not the kind of person you would imagine an ethicist would associate with. The fact is, it’s their job to kill people efficiently and effectively. They are not a soldier. They make the plans that others carry out.

Let’s just say that this person knows how to inflict all kinds of torment on people. (This does not carry out into civilian life.) This person once asked me the most important question anyone ever asked me about my illness: “What happened to you?”

They wanted to know what kind of torment, abuse or disadvantage I experienced that made me have schizophrenia.

I wanted to tell them that I was a teen parent, who had to fight for her education, and was treated very badly by, especially, conservatives as a teen parent. I was told I was going to Hell, and funding for my high school, which was my joy and hope in the world, was always threatened.

I wanted to tell them that I had experienced sexism in the field of philosophy that made me very uncomfortable.

I wanted to tell them that I experienced a lot of sexual harassment when I was working as a teaching assistant.

I wanted to tell them that academia is not made for parents, especially teen parents.

I told my counselor instead.

Stigma

There are at least three kinds of stigma: (1) Self-Stigma, (2) Other Stigma, and (3) Stigma by Association. The literature discusses each of these.

Self-stigma is when a person internalizes the stereotypes and “othering” the society holds about them. They may think they are, in fact, a bad person for having schizophrenia. They may think they are at risk for committing violence. They may think they should be punished, or closely watched. This can cause a person to have low self-esteem, live “in the closet,” and not seek treatment.

Other stigma is when people who do not experience psychosis have negative views and discriminate against people with psychotic disorders. This can include not wanting to date a person with schizophrenia, not wanting to have conversations or be friends with people with schizophrenia, and not wanting to work with people with schizophrenia.

Stigma by association is when people who are associated with a person with a psychotic illness feel shame about having that person in their family, school or workplace. They may lack education about people with brain disorders, and there is evidence that proper education about these issues can lessen stigma by association.

Stigma can lead to discrimination by making people treat one differently. As someone who has dealt with gross amounts of stigma, I can say that people have treated me as a potential threat, a wild-eyed disarray, and needing to be “compliant” and tamed. This, even when my symptoms, which have never been threatening, were at bay. Stigma leads one to “see” you differently. It leads to bias in how your actions are interpreted.

I have learned to deal with stigma by living openly and “calling it out.” I risk all kinds of things doing this, but it’s the only thing I know to do.

Justice at Both Ends

We may live in a world where luck is involved, but there’s luck and there’s luck. We have the ability to change our world, to make things better for other people and ourselves. We have the ability to reduce the amount of negative luck people experience. For example, if we alleviated poverty, there would be fewer brain disorders, just as if we reduce child abuse, there would be fewer cases of child PTSD. If we want to reduce the amount of brain illness in the world, we need to be committed to justice.

At the same time, there are people who do and will continue to suffer. For those people, we need justice at the tail end—we need justice for people with brain disorders. This means making people feel OK with accepting government benefits, increasing government benefits so that people with brain disorders are not living in poverty, and, of course, reducing stigma.

I hope I have made a case for justice before and after psychosis.

When Having a Disability Means You Can’t Work

Right now, my doctor doesn’t want me working. I’m simply not ready, and I have to come to terms with the fact that I may never be ready.

I have a very good friend who has bipolar disorder. He is also on disability, and we recently discussed working. He was feeling like he should work, but was unsure about whether he could handle it.

He’s been stable for a few years, and here’s the conclusion we came to: He remains stable by (1) taking meds, (2) going to counseling, and (3) maintaining a therapeutic lifestyle 24/7.

We concluded that, without any one of these, he would probably go back to the hospital.

It’s the same for me.

I continually do things that are therapeutic—whether it’s participating in poetry, painting, writing, reading, photography, walking, and so forth. I maintain a therapeutic environment for myself 24/7, under the advisement of my doctor.

It’s only been a year since I have been in the hospital, and just under a year that I’ve been on my current medication. That’s far too early to tell whether my medications will prevent me from having a psychotic break if I should try working. I have, in the past, had a psychotic break every six months to a year. I still vividly remember my last break, and I don’t want it to happen again.

Keep in mind that I was given a poor prognosis. The very first psychiatrist I saw told me I should expect to lose a lot of cognitive functioning. I’m lucky to have not lost as much as they thought. I chalk it up to having good care, and fighting like hell.

But I still struggle with not working. The feeling of not working for a living.

If you browse around my website, you will see that, from an early age, I have been involved in many things, and have been very career oriented. For a person like me, not working is devastating.

This is true even though I have doctors’ orders.

I know I have a legitimate disability. There’s no doubt about it. I have had serious psychotic breaks. I am trying, each day, to maintain my health, above all else. I don’t like becoming psychotic, and it’s not like my medicine is so magical that it will, with 100% efficacy, prevent a psychotic break.

They know that, for example, stress can exacerbate psychiatric symptoms. So, I try to limit my stress, and engage in stress-reducing activities, like practicing mindfulness.

Currently, I have to come to terms with the fact that I cannot work—my doctors says so, even—and that I may never be able to work again.

For me, coming to terms with this myself is one thing; a big thing. Realizing this is but one step in coming to terms with my condition and lot in life.

But the even bigger thing is having regular people understand this. When people meet me—when I am out in public—they may not know I have a mental illness. (Unless I am symptomatic. In that case, I may be in my pajamas in public, or looking a huge mess.) I have an “invisible disability.” Not to mention, many people still have stigmas about mental illness, making them think a mental illness is not a real illness just because you can’t really see it.

So making other people understand that I may not be able to work—and that I may be on SSI (and poor)—for the rest of my life is difficult. But it’s something that’s important.

I hope that, if you are reading this, you will not judge people who have to be on disability and who cannot work due to disability. There’s a segment of society that makes people feel like it’s not a legitimate option. This often stems from conservatives who tout the notion that people exploit the safety net system. For so-called Christians (as most of them allege they are), they are highly skeptical and not especially loving when it comes to caring for the wretched of the Earth. (WWJD?)

In my experience, it’s very difficult to get disability. It wouldn’t be easy to fake it. I had to be hospitalized eight times and given a poor prognosis from several doctors before I was given SSI. I was suffering, and denied SSI (and, thus, healthcare) for several years. The whole process is insult to injury. And then you end up living in poverty, anyway.

But my whole point is that each of us can make a difference. We can change things so that people like me, who have to be on disability, do not have to constantly feel like we have to justify this to people who have no business prodding for our medical information.

The fact is, I have tried working several times. Everyone who knows me knows I didn’t want to go on SSI. I wanted to work. Take a look around my website—I like professional accomplishments. But I had to go on SSI because I simply could not work.

Let’s try to make things easier for people who are already suffering enough.

Poor People and Having a Voice

Right now, as I write this, my area, Daytona Beach, is struggling with a “homeless problem.” City officials don’t know how to handle the problem.

Some have proposed a shelter in the area, but the city doesn’t know if it can afford it. They want surrounding cities to pitch in. For all the discussion of how to solve the problem of poverty or homelessness, I rarely see the voices of actual poor or homeless people. Their voices are lacking in these discussions. They are treated as a problem for others to solve, not as human beings with their own thoughts and feelings on the subject.

I have found that, even though the world of a poor person may be limited because of a lack of resources, they still usually know what they need. They are the best ones to solve the problems they face. But, too often, others try to speak for them.

I’ll tell you a story: I used to give money to homeless people in Daytona Beach. Back when I was in college, I’d see homeless people panhandling. I’d stop and give them a few bucks. I never thought twice about it.

Frequently, I hear how people don’t trust that the homeless would spend the money on food or something they actually need; that they’d spend it on alcohol. I never cared about this. I figured they need money, otherwise they wouldn’t be asking for it. We rarely talk about the alcohol and drug problems of the wealthy, but when it comes to homeless people, we are ready to speak up. Why is it that we are so harsh on poor people?

My local newspaper continues to report on the homeless problem, but rarely are actual homeless people consulted in their own affairs.

Having a voice at all is difficult. Having any social or political say when you are poor is a challenge. But it is especially paternalistic when other people think they know how you should best live your life. Often, the solution is a shelter, even though Housing First initiatives, which provide homes to homeless people outright, have been shown to work. We don’t think we can give poor people money directly, even though, if you ask them, that’s what they need. We don’t think we can just give homeless people homes, but places that have done that very thing have solved their homeless problem.

Perhaps, in the future, we can actually listen to poor people, especially when considering their affairs.

Poor People and Freedom of Movement

I have about a quarter of a tank of gas in my car. Currently, gas prices are relatively low, so I put as much gas in my car as I could afford. Aside from local friends’ houses and the free springs in the area, there’s not many places for me to go which do not require money. Going places costs money. I don’t have money.

It’s true that I could walk or ride a bike, but Florida was recently ranked top worst places for bike riders. More people die on bikes each year in Florida than in any other state. This is because the area is not bike or pedestrian friendly. The bus system here, too, is not as sophisticated as in New York, D.C., or Chicago, all places I have been.

So I rely on my car. Most people around here do. I’m lucky to have a car because it is a backup home for me. I always think, if all else fails, I could live in my car.

But my car is pretty stationary, and has been since I got on SSI. I simply cannot afford to go anywhere. I live in what some see as a tropical paradise, and have many theme parks and other entertainment around me, but I cannot go there. I cannot afford it. So I stay at home.

Freedom of movement is a basic human right, and mine is infringed upon simply because I am poor. These days, I travel one mile away from my house at the most, usually to shop for something I need. Other than that, I stay at home.

It wasn’t always this way. I am well-traveled for a poor person. I have visited most of the eastern and central United States. So I know what it’s like to have freedom of movement, and have it taken away by virtue of being poor. Let me tell you, it stinks.

Travel is one of the things wealthier people like to brag about. Being well-traveled is seen as an important thing to be in higher income brackets. Wealthier people can afford freedom of movement, and even boast about it. I cannot afford it.

Poor People and Education

One of the most pernicious stereotypes about poor people is that they are dumb. They may be less formally educated, or, like me, they may have formal education. But let me tell you a story about how I got my education.

When I was growing up, the thing I wanted most was to be educated. I dreamed of going to college. I didn’t, of course, think that college was for poor people. I knew I was poor, and I didn’t think there was a way for me to go to college. But I wanted to learn. When I was about 13, I asked for the complete works of Shakespeare for Christmas. My mother delivered. I got the complete works of Shakespeare. I rented plays from the local library, and watched while reading along. I taught myself Romeo and Juliet, Hamlet, Macbeth, King Lear, and others. I was self-taught, for the most part.

As I got older, all I knew was that I wanted to go to college. I applied first to a community college, then to a private university. I graduated, and went on to graduate school. As I was writing my Master’s thesis, I had my first psychotic break. But I had that break after I was able to get well educated, formally and informally.

The poor people I come across are not stupid. They sometimes have less formal education, but they have life knowledge. They know about how systems work. They have taught me a lot about how to navigate the disability system, how to navigate the mental health system, and more. I have discussed with other poor people how to manage money. One of my good friends lives several hours away from me, so instead of visiting, which costs a lot for either of us, we use Skype. We are fortunate to have internet access, but it comes at a price. When we go the tiniest bit over budget, we have to stay in and not do anything in order to save and rebound. The majority of my friends, in fact, are good with money. They just don’t have much of it.

My friends are almost all formally educated, too. Most of us went to college to learn. So, most of my friends are lower income and educated.

Even now that I’m not in school, I still keep up with the news, conduct scholarly research, and whatnot. My friends read a lot, and think a lot. We have intellectual conversations. So, no, I’d say there are plenty of smart poor people.

Poor People and Mental Illness

Because I am disabled by mental illness, and am on SSI, the topic of being impoverished while suffering a mental illness is a dear one to my heart. I will tell my story.

I suffered a psychotic break in graduate school. I was one of the people who was trying to escape poverty. I worked hard, and tried not to make any mistakes. But one cannot account for illness, and, after discussing things with my doctor, I applied for disability. This leaves me with about $8,000 a year to live on. On this amount, I cannot afford a roof over my head of my own, so I live with my mom and stepdad.

Currently, I have a 2004 Ford Focus that was paid off before I got on disability. It needs work, and I cannot afford to have work done on it. I certainly cannot afford a new car. I give myself $100.00 per week to live on, which is the definition of extreme poverty in the United States. This covers my clothing, hygiene products, entertainment, and so forth. I use the rest of the money to make payments on the computer I am using to write this, and, occasionally, I have enough saved up to buy a new pair of glasses, or a new phone, which is the only way I have a smart phone.

I have been in the hospital for psychosis eight times. I regularly go to the clinic to get medications. I go to a place for low income people. So, I associate with poor people with mental illness all the time.

One of the travesties in our country is that we make people with mental illness poor. Social Security is not enough to live on. It’s supposed to cover housing, food, clothes, and entertainment. But it barely covers my costs for gas, clothes, and hygiene products. Think about it: $8,000 per year. Can you live on that?

Before I got on disability, I tried to work because I did not want to be on disability. I was hospitalized five times before I got approved for disability. After that, I struggled with finding the right medication for me. I am currently on an antipsychotic, but it gives me some side effects.

Every month, I go to the clinic for my medication. There, I see many poor people with mental illness. For all of the good qualities I have mentioned of poor people, let me make one thing clear: Being poor is not fun. It’s not great times.

I don’t know what percentage of the poor population suffers from mental illness, but I’d wager quite a bit. If you are disabled from a mental illness, you are bound to be living in poverty.

Poor People and Rationality

I read many articles regarding poverty. Quite a few of them focus on the seemingly irrationality of poor people. This is a topic I have read about and thought about extensively.

Why do people who are poor spend money on fast food? Why do they buy designers clothes or purses? These are the topics I have read about.

Now, I haven’t read many articles critiquing how wealthy people spend their money. If anything, I have read advice from people who are wealthy about how to manage money. So, the ground is already uneven here. Why do we choose to focus on poor people, and how they manage their money, while taking advice from wealthy people? No one asks why rich people buy designer clothes.

Much of what has been written on the topic assumes that poor people are not smart, do not know how to manage money, and lack agency. None of these, in my experience, is true.

What is true is that you have to learn different things if you have a large sum of money. That is, managing less money, on a strict budget, dealing with expensive housing, and so forth, is different than having disposable income, being able to afford housing, and, even, put your kids through college.

But we shouldn’t assume the world revolves around rich people, taking their advice, and assuming that poor people are irrational.

Oftentimes, poor people have less to live on. They have a strict budget. They live paycheck to paycheck. They don’t have much, if anything, for savings. While I’m sure we could all improve in the area of money management, the fact that poor people live this way does not show that they are bad with money. It shows they have very little coming in for what they have to pay for.

If you are disadvantaged, and you are playing by the rules—that is, not engaging in illegal activities—you are probably more rational than privileged people. That is the conclusion I have come to, at least. The reasoning goes as follows: If you are trying to get ahead by playing by the rules, you have very little wiggle room for mistakes. One mistake can lead you back to poverty. One mistake can ruin your bank account. One mistake is all it takes, so you develop a habit of carefully making your choices. You choose carefully—more carefully than privileged people, who do not suffer the same consequences from one mistake.

This habitual training makes me think that poor people who are trying to keep afloat, and even rise up, are probably more rational than wealthy people. Why not take advice from them?

So let’s answer: Why do poor people buy designer clothes and purses? The answer is a lot of times they didn’t buy them. Oftentimes, these are gifts. The only time I shop a Kohl’s is when I have been given a gift card as a gift. In other cases, I shop at Ross, where I can buy designer clothes or bags for much cheaper than at department stores. And when I go to Ross, it’s not like the place is empty. There is a market for cheaper, but somewhat nice, clothes, shoes, and purses. This is why Ross is in business. Poor people need to go to the office, too, even if it’s just a secretary position. And, often, they have to look presentable for work. So they shop at Ross or get fancy things for gifts. Why do they want them? The same reason anyone else would: They are status symbols. Frequently, they are made better than cheaper things. But let me make one thing clear: I do not see many poor people walking around wearing Prada or carrying a Coach purse. I see poor people dressed in humble clothes.

On Poverty

Last week, I wrote several essays on poverty. It’s a topic I have researched a lot. I read about poverty every day. I was thinking about posting those essays here over the next few days. I grew up working class. At times, I have been poor. The issue of poverty is something dear to my heart. When I haven’t been poor, I have donated and helped other poor people. Currently, I associate with people who are poverty stricken. There’s about 14% poverty rate in my city. I think class discrimination is a terrible thing. The lives of people who are or have been impoverished matter. I hope you enjoy reading my essays.