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.
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.
There’s an article here about how experts have decided that we need a large-scale, federally funded effort to end stigma of mental illness. It’s a good article. Check it out.
There’s an article in the Atlantic about job hunting while having schizophrenia. According to the article, 85% of people with schizophrenia are unemployed, while 70% of them would like to work. This gets back to my previous post about how I am an asset. I explained that discrimination still occurs. Check out the article.
Although it’s illegal to discriminate against people with mental illness during hiring, it is well known that discrimination still occurs. People with disabilities are disproportionately living in poverty (partly because SSDI and SSI, if they are on that, provide you with just that—poverty) and cannot find work.
Previously, I hid my mental illness from people, especially people I worked with. These days, I live openly.
Let me tell you a few reasons why I am an asset due to my mental illness. Maybe this will change the way people view people with mental illness during the hiring process.
Firstly, having a mental illness, and wanting to be well, makes me, de facto, responsible. I have to go to the doctor once a month for a shot of Abilify. I cannot miss this appointment. It is important that I get my shot on time. The consequences of me not doing this are that I may suffer a psychotic break—considered one of the most disabling forms of disability. So, I am used to both being responsible, and having a huge risk involved in this responsibility.
Secondly, I have been hospitalized eight times. Eight times. How, you may wonder, does that make me an asset? I’ll tell you: Mental illness strikes every income bracket, education level, race, ethnicity, gender, sex, religion, sexuality. Each time I have been in the hospital, I have made it a point to associate with the other patients. I have met people with PhDs from Harvard, teachers, train engineers, gangsters, Christians, atheists. I have bonded with people of every different color and creed.
Thirdly, I have to associate with many types of professionals. My condition has put me dead center in the middle of medicine. I have to have fruitful relationships with (1) my Nurse Practitioner, (2) my General Practitioner, (3) my therapist, and other medical professionals, including nurses and psychiatrists. If these relationships are not fruitful, I don’t get better and they can’t do their job well.
Fourthly, I have had to navigate government bureaucracy. I have been on SSI for a couple of years now. Getting on disability requires that you, even though you may be very ill, navigate a huge system that may seem impersonal and mechanistic. There’s the paperwork, the doctors’ notes, the phone calls. This continues even after you get on SSI. I am required, for example, to give an accounting every six months about how I have spent my money.
Fiftly, I know what it’s like to struggle and to succeed. I have had to learn how to become “scrappy.” A scrapper. It’s not below me to do entry-level work, even though I have a great education and experience beyond entry-level duties. Mental illness knocks you on your butt, quite often, and people like me have had to re-learn how to perform basic acts, like self-care (hygiene, eating, brushing teeth). It is very humbling to be on top of things and then, suddenly, have to remember that you need to wear shoes when you go outside. My success has not been handed to me on a platter. I have earned it.
Sixthly, I know how to manage stress. In fact, I went to counseling for six months one time just focusing on how to manage stress. This is because stress, for me, can cause flare ups in my schizophrenia. I’m not the only one prone to stress-related illness, though. There’s a whole body of research on how every day stress affects most people. Most people. Not just me. However, I have had expert education and training in managing stress.
Seventhly, I am creative. It’s not just me who is creative. Anyone who has had to deal with a serious, chronic illness has had to get creative sometimes. I have had to try different treatments, different doctors, different therapists. And I have had to be open to different and new treatments, therapies, solutions. Sometimes, I have proposed my own solutions to these challenges. I have discussed treatments with scholars who work in the area of psychiatry.
Eightly, I have a unique perspective. This is because, when you are ill, you come to a point where you are free to think differently than most people who are going about their daily lives. Not often do we have time to pause and reflect on the important things in life. But I have. Not just as a philosopher, but as an ill philosopher. Illness forces you to pause and take stock of things. As an ill philosopher, I have been forced, on top of my choice, to take a perspective of reflection and mulling over what’s important in life. This has given way to creative and unique thinking.
These are but a few reasons why I may be an asset to an organization. I’m sure that other people with mental illness have similar ways in which they are assets. Think about that next time you are hiring.
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.
I found this really good article about depictions of people with mental illness in the media. The media is not a very good place to find accurate depictions these days.
Do you know of any good films depicting mental illness? One that comes to mind for me is Call Me Crazy. If you haven’t watched it, I urge you to. Not only does it deal with my illness, it also deals with PTSD, Bipolar Disorder, and more. It’s a really good film, and, in my mind, helps end stigma.
I mentioned previously that every time I have been hospitalized (8 times), it has been against my will, and against the law.
So you may wonder why I have been hospitalized. There have been times, no doubt, that I have acted oddly. I have had strange beliefs sometimes when I’ve had psychotic breaks. Apart from being disturbing to others, they were mostly harmless. What I mean by that is that I’ve never been a danger to anyone.
People often overreact, or act inappropriately, when it comes to schizophrenia. What’s best is to acknowledge that my beliefs and emotions are very real to me, and to try to deescalate my symptoms. And, if all else fails, for my family to call my doctor. It’s not against the law to act oddly. And when you have schizophrenia, it’s a sign you are ill and need compassionate concern.
The police are often involved in mental illness–to an extent not seen in any other medical condition. It’s a horrible state of affairs. I have written a poem about one time I had a psychotic break and the cops came for me. It’s called Fight With God.
I have a friend on Facebook who is very ill. She has a neurological disorder. She has to have caregivers take care of her. However, someone on Facebook reported her to the state, saying she needs help and is being neglected. So, the state came to her house to check things out.
She is very upset about this because she is trying to stay out of a nursing home. Calling the state is a step towards her going to a nursing home.
So, I want to say that although I share things on here, I have things in my life taken care of. I play by the rules. I know the rules of SSI, and I am playing by them. I go to my doctor and get good care. It’s very paternalistic for people to meddle in other people’s affairs.
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.