Dialogues on Disability: Shelley Tremain Interviews Joe Rachiele

Hello, I’m Shelley Tremain and I’d like to welcome you to the fifty-third installment of Dialogues on Disability, the series of interviews that I am conducting with disabled philosophers and post to BIOPOLITICAL PHILOSOPHY on the third Wednesday of each month. The series is designed to provide a public venue for discussion with disabled philosophers about a range of topics, including their philosophical work on disability; the place of philosophy of disability vis-à-vis the discipline and profession; their experiences of institutional discrimination and personal prejudice in philosophy, in particular, and in academia, more generally; resistance to ableism, racism, sexism, and other apparatuses of power; accessibility; and anti-oppressive pedagogy.

I acknowledge that the land on which I sit to conduct these interviews is the traditional territory of the Haudenosaunee and Anishnaabeg, covered by the Upper Canada Treaties and directly adjacent to Haldiman Treaty territory. I offer these interviews with respect and in the spirit of reconciliation.

My guest today is Joe Rachiele. Joe is a former professional philosopher who specialized in the metaphysics of physics. Now on Social Security Insurance (SSI) for disability, Joe lives with his mother who is his caregiver. He likes to learn social science that will help him understand the political and social world.

[Description of image below: Joe and his mother, Julia Rachiele, sit on a wooden park bench on the path in a park. Joe’s right arm is embracing Julia around her shoulders. Both Joe and Julia are looking directly at the camera and smiling widely. Trees, grass, a parked car, people, and a baseball diamond can be seen in the background of the shot.]

Welcome to Dialogues on Disability, Joe! Please tell us about your background and what led you to philosophy. Why did you decide to pursue a career in philosophy?

Thank you for inviting me to take part in this exciting series and share some of my thoughts and experiences related to my disability!

I grew up in middle-class suburbs of Seattle, raised by a single mother who had a background as a librarian. I was first seriously exposed to philosophy in high school, early for someone who grew up in the U.S. The school principal taught a philosophy class for seniors that focused on excerpts from major historical figures and my best friend’s dad taught philosophy at local colleges. Of the two exposures, the latter seems to have influenced me the most. The walls of my friend’s house were covered with books, from floor to ceiling. I had never met someone who sought answers to such a wide variety of questions and dedicated their life to trying to answer them, even bringing books to my friend’s and my sporting events. It seemed like an attractive way to live a life.

Nevertheless, when I went away to college, I nearly completed a double major in political science and physics. I chose political science in part because I had become interested in political activism—interning with a labor union and at Campaign for Labor Rights, as well as protesting the Iraq War. It seemed natural to me that training in political science would help me develop more reliable opinions on the issues that I cared about. In part, I chose physics out of the many other subjects that interested me because it seemed like the one subject that I would least be able to learn independently after college.

Another important reason that I majored in physics takes a bit longer to explain. I felt very under-prepared compared to the other students at college, even though I went to a respectable high school. I repeatedly interrupted my political science classes by asking basic questions, but often the professor would answer in more jargon that I didn’t understand. In physics, the faculty were masterful teachers, giving clear answers that didn’t presuppose anymore familiarity with the subject than the previous courses offered.

My junior year, I took my first philosophy classes and noticed that philosophy had this feature too. If you didn’t understand a term that professors used, they would often be able to give you a fairly precise definition of how they were using the term. More substantively, these first classes—on ethics, on well-being, for example—were helpful in thinking about the political questions related to my activism. Should I keep protesting the Iraq War even though I know that my contribution to the protests won’t make a difference to any military decisions? How should we distribute resources between the members of society?

I wanted to think about issues of justice. One class away from completing a major in political science, I created my own major in political philosophy, which was essentially just a way to be able to write my thesis on Rawls with members of the philosophy department. Doing so was the greatest education experience that I had as an undergraduate. It seemed to dramatically improve my reasoning. So, I figured that I should go to graduate school in philosophy in order to continue this process and keep studying the questions of political philosophy.

To wrap this up, in graduate school I took a class on the philosophy of physics and fell in love with the field of philosophy of physics. I also realized in graduate school that I was quite fond of teaching philosophy. A life spent studying philosophy of physics and teaching philosophy seemed rather grand.

Why did you leave philosophy? Were there institutional pressures placed upon you that compelled you to do so?

I’ve always been a basketball junkie, playing nearly every single day for many years. In February 2012, I got my first diagnosed concussion playing in a basketball game. I developed a migraine that lasted for six straight months. I stopped all my other work and just focused on trying to T.A. the class that I had promised to assist with. I had to miss some discussion sections for that class and, in my teaching evaluations, at least one student accused me of faking a concussion to get out of teaching.

My migraine was triggered by reading and difficult thinking, but I somehow managed to finish out the term as a T.A., with some kind help from the faculty member leading the class who graded homework assignments for me when my migraine was particularly bad one week. During this period, I remember a professor made a joke to me about the absurdity of filing for disability because I’m too disabled to think. I wasn’t really bothered by the fact that this person made the joke. I’m just a bit embarrassed now because I think that it may have influenced my thinking about whether my condition was “serious enough” to warrant a medical leave, which I probably should have taken.

I hadn’t improved at all that semester. If anything, I had gotten worse. My doctor had said that there are no treatments for post-concussion syndrome. I felt hopeless. That summer, I started doing a little reading on my own about how to treat post-concussion syndrome. I started using a method called the Buffalo Protocol where you exert yourself just below the level that triggers symptoms. It worked! And I used it to successfully recover from all subsequent concussions, but the last one.

I spent the entire summer slowly pushing myself to tolerate more activities and, by the Fall, my migraine had begun to taper enough that I had sufficient confidence to T.A. another class and go on the job market. I spent much of the first two months slowly increasing my thinking and reading. By the time that my single fly-out rolled around, my migraine was under control if I exercised and got plenty of sleep, which I made sure to do.

I got the position, which was a perfect fit for me. So, I briefly worked as an assistant professor in the Fall of 2013; however, I missed most of the semester due to a constant daily migraine triggered by another concussion. While away from work, I had yet another concussion in a car accident in December, my fourth concussion in less than two years.

Now I was in a pickle. When I went on medical leave in the Fall, the disability benefits coordinator in human resources told me that my job was not protected since my disability occurred in the first year. I had already missed most of my first semester on the job. And yet, it took me over five months to recover from each of my first two concussions. I figured that I would need at least that long to make a full recovery from these back-to-back concussions in the Fall and Winter. But I didn’t want to displease the department, given my precarious situation. I knew how difficult it is to obtain a tenure-track job in philosophy. I was worried that if I lost this one, I would lose my only chance at a permanent position.

To further complicate matters, I was coming up for review a year earlier than most colleges—after only two years—which meant that I would be required to submit my portfolio at the beginning of my second year. If I took the Spring off to recover, as I had planned, then I would have done almost no teaching by the time that I submitted my portfolio. I talked with my doctor and chair about what to do. Both strongly encouraged me to return to work. My doctor even said that he was worried that the university would think that I’m a “malingerer”. Given the risks to my career, I decided to return to work in the Spring, before making a full recovery. What’s the worst that could happen, I thought?

Completely unexpectedly, to me and others, the abrupt increase in activity due to returning to work caused my constant migraine to death spiral. It became so severe that I am still unable to talk more than a few minutes without medication, listen to audio, or walk much further than the distance to the elevator in my apartment. For a couple of years, immediately after leaving work, I couldn’t even look at a screen or read. So, the simple story is that I left philosophy because the audio stimulation, the reading, and the writing would be too much for me to handle with my migraine. I hope the longer story illuminates how I developed such a severe migraine and the kinds of decisions and institutional designs that might help people avoid similar health risks.

What other forms of inaccessibility or other obstacles did you encounter in the university?

This interview seems like a good opportunity to mention a bad experience that I had with the Office of Disability Services in graduate school.

Before I developed migraines, I went through a period during which I experienced very severe tendonitis (or perhaps tendonosis). It got to the point where my doctor didn’t want me typing or using a computer mouse until things improved. I bought some dictation software, which allowed me to slowly write papers. But I had two exams left for which I had to answer questions in a limited amount of time. I took one of the tests, typing despite my doctor’s recommendation, and my condition became much worse.

I went to the Office of Disability Services to request accommodation on the second test. Perhaps they could extend my time so that I could complete the test with the dictation software that I was still learning how to use? The office told me, in no uncertain terms, that they do not provide accommodation for graduate students. Any accommodation that I could receive would be at the discretion of my department.

My department was wonderful: we were able to work out alternative arrangements, which, in the end, I didn’t need. But what if I had needed them? And what if my department hadn’t been beneficent enough to grant them? It was a distressing experience.

Because many philosophers specialize in bioethics, philosophy has connections to the medical sciences and medical profession that other disciplines in the humanities and social sciences do not. What, in your view, are the ways in which the medical profession and hence likely bioethicists misunderstand brain injuries?

My troubles with medical professionals became serious after my car accident. I went to see a new doctor in Los Angeles who was terribly misinformed about concussions. He told me that you couldn’t get a concussion from an elbow to the face, claiming that concussions require, for example, giant NFL players to run into each other at high speeds. Wrong. He also said it was “impossible” for someone to experience my symptoms after such a hit. He didn’t seem to think I was lying. Rather, he seemed to think that I was conjuring the symptoms because of anxiety and that they lacked any other physical cause.

At the same time, he was the first doctor who treated my headache symptoms with first-line headache medications. Other doctors had under-treated my headache, assuring me that it would go away with time. Since post-concussion syndrome almost always heals with time, the doctors seemed content to let it run its course, without trying to help me function. I was grateful to have found a doctor who gave me serious medications, even if he thought my condition wasn’t serious.

He ordered many tests and tried to use them to convince me that I was imagining things. All the standard diagnostic tests came back normal and he thought that this result was a sign that my brain was “normal” and healthy. But these tests do not show the microscopic injury from concussions or the functional problems that constitute chronic pain. From the moment that I stepped into his office, he tried to convince me that my symptoms were psychosomatic. It was entirely mysterious where this conviction of his came from!

I went online and spent some time on forums for people recovering from post-concussion syndrome and saw this theme reflected again and again in the stories that these people told. For post-concussion syndrome and migraine, there are no objective tests. This is one obvious risk factor for doctors that dismiss your illness as entirely psychosomatic. Another risk factor seems to be that your condition is difficult to treat, as post-concussion syndrome and migraine can be. That is, doctors may see one’s non-response to medications in the case of migraine or the delay in symptoms of post-concussion syndrome as evidence that one’s experiences of pain have a psychosomatic origin.

Perhaps the suggestion that one’s experiences are psychosomatic in origin is a psychological response on the part of the doctors, that is, a reaction to seeing a patient suffer who they can’t help as though the patient’s condition had a hard-to-treat physical cause. Maybe it’s easier for doctors to believe that they have in fact helped a given patient by telling them the pain that they experience has psychosomatic origins.

It is, of course, difficult to tell the extent to which depression or anxiety may be contributing to post-concussion symptoms. I am not opposed to a discussion of the possible influence of psychological factors and suggestions that patients intervene on these. What I object to is the practical ethics with which doctors approach psychosomatic diagnoses. For example, my next two doctors gave me this diagnosis and refused to treat me with medication, referring me to places that performed psychological/psychiatric evaluations. This is medical malpractice. Stress causes high blood pressure, but this is clearly not a good basis for refusing to treat such a patient and giving them a psychiatric referral.

Not only are individual patients refused treatments, but medical professionals stigmatize entire illnesses and diseases as having a tendency to exhibit psychosomatic causes. The general public blames the character of such patients, seeing them as “malingerers” and “hypochondriacs.” This process of pathologization can be seen especially clearly in the history of migraine, a condition that affects three times as many women as men. Centuries of sexism have associated this condition with “neurotic” women, undermining medical treatment, government funding, and pharmaceutical research. As Katherine Foxhall, author of the new book Migraine: A History, mentions in an article about the history of migraine, “…in the summer heat of August 1787, the General Evening Post described how ‘half of Paris had the migraine, and no lady of fashion could be prevailed upon to quit her boudoir’. Migraine was becoming something to joke about, a complaint that affected a particular kind of person, usually female.”

(In some of my remarks in the previous paragraph, I have followed the discussion in Chapter 1 of Joanna Kempner’s wonderful book Not Tonight: Migraine and the Politics of Gender and Health.)

How have you occupied your time since leaving philosophy, Joe? You’ve indicated to me that you’ve remained intellectually active. How have you done so?

Finding ways to feed the mind, given my limitations, has been a big challenge. In the first few years, my migraine was so severe that I couldn’t read nor talk for more than a few minutes at a time. So, I would spend my time planning short speeches—a couple minutes long—to record on my smartphone. I would then send them to a small group of close friends who tolerated this behavior. They would occasionally send back audio clips or emails that my mom would then read to me. This is how I kept in touch with the outside world.

Eventually, I taught myself to read and look at screens again by looking at Facebook on my smartphone. I started out just glancing at it, then worked my way up to looking at pictures and reading short posts, and finally, after many months, I could read articles again.

Since I spend my days inside, unable to talk to others except for the two days a week that I take a powerful migraine abortive, Facebook and Twitter have now become my primary means of communicating with the outside world. I’ll post popular articles about various topics—political issues, science, philosophy—and engage my friends in brief conversations about them. Many people complain about engaging in conversations about these topics on social media, finding that they get drawn into long, frustrating arguments. But I love the brief exchanges in which I engage. I get hints at different people’s perspectives on a topic that help me work out their views better on my own.

[Description of image below: On a bright day, Joe and his girlfriend, Alissa Figueroa, are wearing solar eclipse glasses and looking up at the sky. A body of water, trees, and clouds can be seen in the background of the shot.]

Joe, would you like to say anything else about something we’ve discussed in the course of this interview and recommend some articles, books, or videos on any of these topics or on something that we didn’t discuss?

To better understand the phenomenology of brain injury, I like Clark Elliott’s book The Ghost in My Brain. He worked as a professor, specializing in cognitive science and artificial intelligence, until he suffered severe concussion symptoms for almost 10 years—much more severe than anything that I’ve experienced. He’s a character many of your readers and listeners may relate to.

My doctor, in conjunction with other researchers, has studied the stigma of migraine. You can find their research article here. I also recommend this relatively short podcast on Migraine Again in which my doctor discusses causes of this stigma, how to fight it, and other issues.

Finally, check out this collection of art made by people with migraine to represent their condition.

Joe, thanks very much for these recommendations and for your evocative remarks throughout this interview. I’m sure that many of our readers and listeners have benefited from them.

Readers/listeners are invited to use the Comments section below to respond to Joe Rachiele’s remarks, ask questions, and so on. Comments will be moderated. As always, although signed comments are preferred, anonymous comments may be permitted.

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Please join me here again on Wednesday, September 18th, at 8 a.m. EST, for the fifty-fourth installment of the Dialogues on Disability series and, indeed, on every third Wednesday of the months ahead. I have a fabulous line-up of interviews planned. If you would like to nominate someone to be interviewed (self-nominations are welcomed), please feel free to write me at s.tremain@yahoo.ca. I prioritize diversity with respect to disability, class, race, gender, institutional status, nationality, culture, age, and sexuality in my selection of interviewees and my scheduling of interviews.

Follow BIOPOLITICAL PHILOSOPHY on Twitter at @biopoliticalph

10 Responses

  1. Dean gribble

    Joe was a best friend of mine growing up. I didnt really know the crap he had too go through hes a very strong and good person thank you for this good read.

    Like

  2. mary jane blodgett

    Read this with great interest and thought it was a wonderful discussion. There is so much to learn about neurological conditions and how medical professionals can better understand and support individuals with a myriad of diagnoses. Hope you continue to have the support you need and deserve Joe.

    Like

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