One of the things I specialized in during my MA program was political philosophy. As such, I’ve been very politically active and have written a bunch of political stuff. I’d be one of those people one could consider as expert–not just a lay-person. My focus during both undergrad and grad school was ethics and political philosophy. I’ve been lucky to work on very good projects in those areas, too.
However, I’ve always been a reluctant participant in politics, both academically and practically. I know, I know: It’s important. If you don’t do politics, it does you. And most of my friends would consider this particular time the prime time to be involved in politics. I don’t disagree with those assessments. It’s just that I currently have a different way of doing things.
Most of my friends–and these would be the real experts, who I defer to–think this is a time to resist the rise of fascism. My resistance is different. I’m going to try to focus on my health and relationships. I’m going to practice corporeal politics by actually meeting people and getting out more. That’s the best thing I can do right now. And I’m going to work on some skills I developed and happen to be good at.
It’s a little impossible to be totally apolitical, I suppose. I’m not aiming for that, anyway. I just decided to tone down my involvement for several personal reasons. We’ll see if that works out. Every time I tell myself I’m going to quit politics, I end up getting very involved in something.
I have given politics a rest ever since the electoral college voted. Let’s see if I can keep it up.
I recently contacted the White House regarding the Dakota Access Pipeline. I asked Obama to oppose it, specifically. Today, I got a letter from him via email. He didn’t come out to oppose the pipeline exactly. Here’s what he had to say:
Thank you for writing, and for your thoughtful input. As President, my greatest responsibility is ensuring the safety of the American people, including when it comes to our Nation’s energy infrastructure. My Administration is setting the highest possible standards for oil and gas production and transportation, and each day we are working to make sure our pursuit of energy resources does not put our communities at risk. That work includes steps the Army has committed to taking in light of important issues raised about the Dakota Access pipeline.
I understand the risks associated with the development and transportation of fossil fuels, which is why my Administration has overhauled Federal oversight and raised the bar on safety across the board. As part of our efforts to improve Federal permitting and review processes, we are making safe pipeline infrastructure a priority in order to help ensure the health and security of our communities and the environment.
As new energy infrastructure is developed, the Federal Government will continue working with State, local, and tribal governments—which play a central role in the siting and permitting of pipelines—to address the concerns of local communities. One of my priorities as President is upholding an honest and respectful relationship with Native American tribes, and we have made a lot of progress in restoring ancestral lands, waters, and sacred sites over the past 8 years. My Administration also remains committed to consulting with tribes to ensure meaningful tribal input is factored into infrastructure-related decisions across the Federal Government. In the weeks ahead, Departments and Agencies will meet with tribal leaders across the country in a series of formal consultations on this issue.
Again, thank you for writing. I hear you, and I am optimistic that together, we can grow our economy and create new opportunities while securing a cleaner and safer future for all our people.
Interesting article at the Guardian.
Interesting article about the humanities here.
I mentioned earlier that I wanted to write down the skills I have gained as an activist and try to incorporate them into my resume. Here’s a short list of skills I have developed from my activism work:
- Campaign strategy and planning
- Building a movement and organizing in community
- Campaign communication: face to face mobilization
- Media skills and social media
- Lobbying skills
- Meeting facilitation and participatory decision-making
- Fundraising skills
- Action and event planning
UPDATE: Here‘s an article by Microsoft’s Lisa Brummel on the undervalued skill of social activism.
For the past month or so, I have been involved in the movement against the Dakota Access Pipeline. I have done many things with this movement, and wish to incorporate my activities into my professional experiences. As you will see in my previous post, I wrote a Letter to the Editor which was published in the Daytona Beach News Journal.
In addition to fighting against the Dakota Access Pipeline, I have also started doing editing work for a Basic Income website. I haven’t done as much work on this as I would have hoped because the Dakota Access Pipeline movement got in the way of that, but I have edited a couple of pieces on Basic Income.
I have been wondering about how to incorporate my volunteer and activism experiences into my resume. I will be doing that soon.
There’s a lot of talk about parity in medicine, especially now during Mental Health Month. Brain disorders are treated differently than other illnesses, so there’s differences in policy, funding, and so forth. But when we talk about parity, we also need to keep in mind that, for carers, nurses, doctors, and other non-disordered people, we need parity in motives.
I’ve come across many people who seem to just want an ordered world–a world free of psychotic people. These people are not acting from the motive of caring and concern for someone who may be suffering. They are acting from other motives. When we think about treating brain disorders, or when we think about possibly curing or ridding the world of them, we need to search our motives, and make sure they are the same for any ill person.
Sometimes I think psychosis simply bothers some people, and they feel the need to rid the world of it. This is not the motive one wishes to move from.
I kinda like it. Plus, it talks about the biopsychosocial model.
In this essay, I want to argue that we should refer to psychotic disorders as brain disorders, but that doing this doesn’t mean giving primacy to the biomedical view versus the biopsychosocial view.
In keeping with some of my previous thoughts, let’s assume you get a broken leg. Furthermore, let’s assume that your broken leg is due to a social ill—someone assaulted you.
You go to the doctor. You get a cast, but, in addition, as you heal, you may need physical therapy in order to heal better in your leg.
Seeing a broken leg as a medical issue doesn’t mean you won’t need treatments other than having a cast, and using crutches until you heal.
In fact, this may be yet one more trauma in your life that you don’t need.
Now imagine that, years down the road, you become psychotic. Imagine further that this is because you have experienced hardship, childhood abuse, and trauma, including being assaulted by someone who broke your leg, years back.
You are taken to the hospital. The psychiatrists there see you as a brain patient. They try to treat your brain by giving you antipsychotics.
But, in addition, you are assigned a treatment team that includes social workers, case managers and counselors.
Seeing psychosis as a brain issue doesn’t mean you won’t need other treatments, like counseling. And, further, your society may need some treatments of its own, if it produces people who traumatize and torments people, and produces social injustice.
Calling psychosis a brain illness doesn’t negate other biopsychosocial causes or cures, just as thinking of a broken leg as a medical issue doesn’t negate the fact that you have been assaulted, and may need counseling, or physical therapy. In other words, calling schizophrenia a brain disorder doesn’t commit us to the biomedical model over the biopsychosocial model.
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.
My undergraduate thesis in philosophy, entitled The More Freely He Breathes: Colonialism in the United States, explored indigenous colonization drawing upon work in Native Studies. All of my prior education prepared me for taking up the research role, during which time I consulted experts across campus, students, experts from other universities, American Indian philosophy, and American Indian Law. In addition, I took a road trip recounting the Trail of Tears from the Choctaw perspective, visiting the reservation of The Mississippi Band of Choctaw Indians, where I was priviledged to experience Choctaw Indian Fair and a speech by Chief Martin. I visited The Choctaw Nation of Oklahoma, seeing historic, administrative and governmental sites and visited tribal-owned businesses.
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.
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:
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:
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.
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.
What do you think of when you think of a person with schizophrenia?
If you are like most people, you probably don’t think of technology savvy people, using said technology to better themselves.
But according to this new survey, that’s exactly what the picture of schizophrenia is in America, currently. That puts me in line with other people with schizophrenia. I use a lot of technology–computer, smartphone, tablet–and I use all of this to connect with other people, including other people with mental illness, and gain information and other things to help me.
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.
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.
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 just received the newsletter for the American Patient Rights Association. I was recognized for my work as a Web Content Editor:
A big thank you to our Volunteer Website Content Editors
APRA also wishes to recognize the great work by our volunteer website content editors Jennifer Lawson and Stephanie Kumar. They work hard to keep our website updated with the latest and most relevant news and information with respect to patient safety and rights, particularly having to do with hospitals.
I volunteer for the American Patient Rights Association. You can join for free. It’s a consumer advocacy group, and everyone will deal with health care system in their lifetime. You can learn how to save on medical costs, and even how to save your own life or the life of someone you know. Check out their website and follow them on Facebook!
One of the projects I have worked on has to do with mental illness. I worked as a case manager and I found that, in my area, there were few resources available to my clients. A friend and I came up with the idea of a website that could serve as a resource for people with mental illness, their friends, family, and supporters. My brother, Jeremy, enhanced the idea. He proposed creating a social media site. We all collaborated and came up with the website A Dose of Reality.
If you are interested, you can sign up and communicate with like-minded individuals.