Review of the Past Year

Last week, I was in therapy and the topic of more daily tasks for me to do came up. After reviewing my past year, I think I’ve remained pretty busy!

For example, in the past year, I was:

-Involved with NoDAPL and received a letter from President Obama on the matter.

-In regards to NoDAPL, I was published in the Daytona Beach News Journal.

-I was published on the Ghost Parachute Blog 3 times.

-I wrote a book.

-I edited an international philosophy journal.

-I was on Team Bernie during the primaries.

But most importantly, I have remained focused on my mental and physical health.

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.

Happy Earth Day

As I mentioned previously, I live on a protected environment. I have also worked with an environmental organization. I did business development for a local environmental nonprofit. I had to quit when I fell ill. But perhaps my biggest environmental accomplishment is helping get the lake and wetlands I live on protected.

I received a great environmental education at Stetson University. I learned about Florida springs, wetlands, and more. When I moved to the place I currently live, I was told the lake was over 80 feet deep, and was naturally spring fed. Some years later, they were beginning to put a development up on the other side of the lake, cutting down acres’ worth of forests. People in my community got together to have the lake and wetlands protected, which they now are.

Since the wetlands are protected, we let everything grow as it wants to. This is what it looks like now:

And this is what I looked like working for the environmental organization:

Things Have Been Growing

Last year or so, I posted about living on a protected environment. My neighborhood had the lake and wetlands I live on protected. So, we have been letting things grow as they wish. Turns out, things have grown quite a bit! Take a look:

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.

Environmental Action

Recently, my neighbors and I found out that the lake we live on is now a protected environment. This happened after years of action in my community. There had been some serious development that threatened the habitat of many species there, including eagles, ospreys, and many other organisms. Kudos to my neighborhood!

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