Hello, I’m Shelley Tremain and I’d like to welcome you to the ninety-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 exclusion, as well as personal and structural gaslighting in philosophy in particular and in academia more generally; resistance to ableism, racism, sexism, and other apparatuses of power; accessibility; and anti-oppressive pedagogy.
The land on which I sit to conduct these interviews is the ancestral territory of the Haudenosaunee and Anishnaabeg nations. The territory was the subject of the Dish with One Spoon Wampum Belt Covenant, an agreement between the Iroquois Confederacy and the Ojibwe and allied nations around the Great Lakes. I humbly offer these interviews with respect for and in solidarity with Indigenous peoples of so-called Canada and other settler states who, for thousands of years, have held sacred the land, water, air, and sky, as well as their inhabitants, and who, for centuries, have struggled to protect them from the ravages and degradation of colonization and expropriation.
My guest today is Sofia Jeppsson. Sofia writes about issues related to agency, Madness, and psychiatry. In articles such as “Psychosis and Intelligibility” and “Radical Psychotic Doubt and Epistemology,” she draws heavily on her own experiences of Madness. When Sofia is not philosophizing, she writes fantasy stories, draws pictures, and goes for long walks with her dogs.
[Description of photo below: A selfie by Sofia who is on a walk in a snow-covered forest with her dogs. She is wearing a parka, warm scarf, and toque.]
Welcome to Dialogues on Disability, Sofia! Please tell us about your background and what path you took to become a professional philosopher.
I grew up in a small village in southern Sweden. My family was working class and no one in my family had attended university before me. However, it was always clear to me that I would go to university. I will explain why.
Looking back, I think that I had my first real psychotic break when I was only ten–not in my twenties, as is customary. Even before that, I had trouble fitting in with other kids; I came across as “weird” and even as a kid with whom “there was something wrong.” Yet I was good at drawing, reading, writing, math, and learning facts; in other words, I was both “the weird kid” and “the smart kid.”
I thought of this combination as two sides of the same coin. Where I grew up, people would say that “thinking too much” might drive you insane. A relative who was once hospitalized for psychosis used to point to their head and say “You gotta have something up here in the first place, for it to go off the rails.” I eagerly absorbed and internalized this association between intelligence and Madness. I was weird, crazy, and there was something wrong with me; but I was also intelligent, and would go to university one day. Actually, my entire family took it for granted that I would go to uni.
My entire self-esteem hung on being good at drawing and good in school. I thought that I had to achieve great things as an adult, because then I could be a Mad and eccentric genius. If I would end up with an ordinary job, or even worse, permanently living on welfare, then I would be just a mental case. Of course, this assumption is a terrible thing to think. I get that. Often when I have said this to psychiatrists or psychologists, they have recoiled, objecting that I should not call myself a “mental case,” as if that term is the biggest problem here rather than the entire internalized norm. Because as terrible as it is to think that you must accomplish great things to have any worth, it’s no mystery where I got this from. This idea is all over society! Madness can be somewhat acceptable if you are accomplished enough; but it is bad with a capital B, if you are not.
Even though learning was generally easy for me, I sometimes missed big chunks of school during my madder periods. I graduated from the Swedish “gymnasium” (roughly senior high school) with middling grades. But I got top scores at the Swedish University Test which enabled me to move to Stockholm to attend university. It was 1996, I was nineteen years old, and in many ways, life was easier for young people at that time than it is now. For starters, I got a tiny student apartment with my own bedroom and bathroom, shared kitchen, close to both the university and the city center, in which I could live all year round for a modest rent. For most kids today, this arrangement would be a pipe dream.
Moving to the more tolerant and diverse big city did me a world of good. Not only was mental health more openly talked about, Stockholm was also far less homophobic than my childhood village—I am bi.
At first, I studied political science and economics at uni, with some vague idea of getting a politics master’s degree and get some political job where I could promote a more socialist future (or something). After a little over a year in Stockholm, however, I had a serious psychotic breakdown. For the first time in my life—despite a long history with Madness already—I became a psychiatric patient.
Now, life was easier back in the nineties; Sweden had a much more substantive welfare state back then. I was assigned a team of psychiatrist, psychologist and counsellor; I could stay on paid sick leave for as long as I needed to recover. I did not get an exact diagnosis—I have never gotten one—but was told that I was somewhere in the schizophrenia ballpark, although I didn’t tick quite enough boxes for that diagnosis.
I came out of this psychotic period with no idea of what I wanted to do with my life. Instead of going back to uni, I went to art schools for a few years, drawing and painting, thinking that perhaps my fate was to become a great artist. I changed my mind on that when I realized how extremely hard it is to make a living as an artist (I know, I know, and then I became a philosopher instead … it’s hilarious).
Next, I worked as a nursing assistant. I think that I was twenty-six or so when I thought to myself that I wanted to go back to university and study something and get a degree in something. I still had no idea what to study. I flipped through the university’s catalogue and found philosophy evening classes that seemed interesting, as well as possible to combine with my nursing job, so I went.
One of the professors that we had was pretty mean to students whom he thought asked “stupid questions.” When he gave a lecture on free will, I overheard two girls talking during the coffee break about something that they had not understood, but were afraid to question. I had understood the thing, so I went over to them and explained it. One of the girls said to me: “What a good explanation. You should be a philosophy professor!” I latched on to her comment and thought to myself : Yes, that’s it, this is what I’m supposed to do with my life.
After this realization, I never looked back. I just went for a career in philosophy. Back then, I had no idea how hard and stressful the academic job market is. When I finally realized how difficult it is, I felt that I was in too deep already to back out.
After I got my master’s degree in philosophy, I became a grad student at the same department. Nowadays, this sort of continuity almost never happens, but it was not out of the ordinary at the time. I had my ups and downs. I would occasionally think, in the middle of a more stable period, that I had finally become cured and normal. I would quit all my meds, thinking that I could live just like anyone else now, not watching out for special triggers or anything, because I had finally gone sane! Then, I would do something, like go abroad for a summer—travelling and changing environments is a big trigger for me—and I would have another breakdown as a result, would go back on Haldol, and be on sick leave for a while. Still, I eventually pulled through and got my Ph.D.
Getting post doc positions was made that much harder because of said problem with travelling and new environments. I do much better if I have my husband with me–I refer to him, only half-jokingly, as my “emotional-support husband”–but it did not feel safe for him to quit his job until I had a permanent one myself. I was fortunate enough to get a scholarship to stay on at Stockholm Uni for a while and do research. After that, I was a post doc at the University of Gothenburg, doing a weekly commute across the country.
Although I made some great friends during my stay at Gothenburg, the long commute and stressful scrambling to find a new job after that job ended was terrible for my mental health. I had to take ever more meds to cope at all. My downward spiral was broken when I got my current permanent job at Umeå University/Ubmeje Universitiähta in the north of Sweden. Getting this job has made my life far less stressful and much, much better. Having good pay and job security should be the norm!
You write about madness. What is your writing on madness grounded in, that is, what are your experiences with madness and how are these experiences reflected in your research and writing?
I talked a bit about my history with Madness in my answer to your first question already; but I have not said anything about what it is like for me. So here goes: The world that I experience is flimsier and less stable than I take it that most people’s worlds are. In my articles, I talk about the Mainstream World and the Demon World. The Mainstream World is the one that I share with others; but, as I said, it is flimsy. Sometimes it shatters and falls apart, revealing the Demon World that lies beneath. I have spent so, so much time being absolutely terrified of demons out to murder me.
Some readers and listeners of this interview might jump to the conclusion that I must have grown up in some kind of cult from which I got the demon fear. But that’s not the case. My family was not religious and no one ever talked to me about demons. Still, I suffered so many terrifying and inexplicable experiences. I had to come up with some kind of framework for mentally dealing with what was happening to me; “mental illness seems like a plausible explanation only from a distance, when in a sufficiently stable frame of mind. So, how should I explain what was happening to me?
I actually remember reading about alien abductions at some point–I think that I was twelve or thirteen years old at the time. I briefly thought that I might be terrorized by nasty aliens, but I dismissed that idea for scientific reasons–for instance, that faster-than-light-travel, as far as we know, is impossible. It made more sense to me that there are different layers of reality and that the Demon World and its murderous inhabitants are utterly different from the Mainstream World and its people, not even obeying the same natural laws. It is hard to remember precisely all the details of what I experienced, how I thought, and how I reasoned several decades ago. Still, it seems to me that at some point, the experiences were more ambiguous and I theorized about them and what might explain them. After I landed on the theory of demons, the theory began colouring the experiences, and something like aliens–or, for that matter, secret service agents, the Illuminati, or whatever else other Madpeople worry about– was no longer an open possibility.
I have now written about my Madness in a number of articles, including “Psychosis and Intelligibility” from last year and this year’s “My Strategies For Dealing with Radical Psychotic Doubt: A Schizo-something Philosopher’s Tale”; “Radical Psychotic Doubt and Epistemology”; and “Exemptions, Self-exemption, and Compassionate Self-excuse”. I try to push back against what I take to be common and harmful misconceptions about Madness and how to best treat and interact with Madpeople. I do so drawing on my own experiences, picking them apart and analyzing them with the philosophical tools that I have at my disposal, adding other people’s empirical research results when relevant.
One such harmful misconception about Madness is that when people enter states of florid psychosis, they are completely impossible to understand, so it is best not to try. As a psychiatrist said at a workshop that I attended as an invited speaker (quoting from memory): “I always tell new doctors that they shouldn’t spend time and effort trying to understand the patients’ ramblings. There’s nothing there to understand; they’ll burn themselves out trying.” He was appropriately embarrassed when I objected to his remarks based on my own experiences. So many people assume that “researcher/scholar” and “psychosis patient” are mutually exclusive. They are shocked and surprised when someone turns out to be both.
People assume that the psychosis is nothing but a manifestation of some brain dysfunction or other, essentially meaningless–the best and only thing to do is to stuff the psychotic person full of antipsychotics and hope that they go back to normal as soon as possible. If this doesn’t work, too bad, nothing to do. This understanding of Madness is a horribly harmful misconception. It can be extremely important when one feels oneself falling through the cracks in reality and entering another world and another state of mind to have people close to you do the best that they can to understand what you are going through and empathize. As a philosopher with lived experience, I can provide ethical arguments for our duty to try to understand and analyses and explanations of my own experiences that can help other people understand–as far as possible–what it is like.
Of course, it is not just me who pushes back against this misconception. You recently published an interview with Abigail Gosselin, for instance, who wrote a book about psychiatric ethics from a patient perspective, which I have not read yet, though I have ordered it and look forward to doing so! From the other side of the fence, so to speak, my friend Rosa Ritunnano, a psychiatrist and researcher at Birmingham University, does great work in this area. The more people who take on these issues, the better!
How do you understand the relationship between philosophy/philosophers and madness?
First, I think Madness has the potential to inform philosophy in various ways. Of course, Wouter Kusters wrote an entire book on the subject, so I am not the first to say this. Still, in my latest paper, “Radical Psychotic Doubt and Epistemology,” I discuss the implications that a specific Madness phenomenon—Radical Psychotic Doubt, or RPD—has for certain epistemological debates and arguments. To be very brief, Madpeople might actually doubt most of reality in a way that sane people rarely do and of which they may not even be capable. And yet, there are arguments against scepticism and about the “hinges” in hinge epistemology, which rely on the assumption that such doubt is impossible.
Second, I think that philosophy can help us conjure new coping strategies to better live with and handle our Madness. During my decades as a psychiatric patient, I met psychiatrists and psychologists ranging from terrible to awesome. Some people who work in the field are very passionate about helping their patients as best they can and do so with both compassion and respect. But the treatment options are often pretty bad, which is something that I believe many people who have never been psychiatric patients themselves fail to realize.
There is a common misconception according to which Madpeople simply need to accept whichever treatment their doctor suggests, comply with this treatment, and then they/we will once again be sane. This (mis)understanding of Madness is very far from the truth. Sometimes, psychotropic drugs work to repress people’s symptoms; sometimes, they don’t. Even when they do, they rarely make all symptoms completely vanish; moreover, the desired effect might come at the price of intolerable side effects.
I want to stress that I am in no way against medication, if it helps. I was on Haldol for many years myself and, for a long time, I was very happy with the effects of the drug and how I functioned on it. I merely want to stress that it is quite common for the drugs not to work as intended. Sometimes, the drugs work at first, and then they don’t work. For my own part, Haldol lost its effect eventually, while simultaneously giving me more and more nasty side effects. Non-drug treatments like cognitive behavioural therapy also have very different effects for different people
Because Madpeople differ so much, psychiatrists and psychologists should ideally have large and varied toolboxes at their disposal. I think that philosophy can help us invent new tools for the box. For instance, Paul Lodge, who was previously interviewed in this series, and I have both found that taking a sceptical attitude–in the epistemology sense–to our shifting experiences of reality and learning to just roll with things, rather than fight them, have been immensely helpful practices. (We are actually writing a text together on this topic.) For other Mad people, so-called “reality-testing,” which is basically the opposite of what Paul and I do, works great.
Empirical studies can determine whether a certain tool fits many patients or only a few and, in addition, might help us predict who will be best helped by what. Nevertheless, philosophy can help us invent the tools in the first place.
Despite the potential for Madness to inform philosophy and for philosophy to inform Madness, there is a great deal of sanism in the field. Philosophers who write about Madness or mental disorders (the latter is a much more common term in the literature)—at least in my initial area of expertise, namely, moral responsibility and agency—tend to write about us in the third person under the implicit assumption that no Madpeople will ever read their texts. “Serious mental disorders,” presumably, exist only out there, not in here, not in the philosophy seminar or at the philosophy conference. Many, though not all, of these texts that are written by sane philosophers for other sane philosophers are both objectifying and condescending, though the authors might think of themselves as quite empathetic and understanding.
[Description of photo below: A selfie taken by Sofia outside of her office. She has very short hair, is wearing dangling and stud earrings, a shirt with vertical stripes, and a tie with diagonal stripes, and has a challenging expression on her face.]
I discuss these problems in the beginning of my essay “Exemption, Self-exemption and Compassionate Self-excuse,” which, as you know, is a chapter in the forthcoming The Bloomsbury Guide to the Philosophy of Disability that you edited. Nevertheless, our entire society is horribly sanist and I do not think that philosophy is any worse than other areas. On the contrary, being a philosopher is probably less bad for a Madperson like me than most other jobs.
Most people feel uncomfortable around the topic of psychosis and thus try to ease said discomfort by drawing ridiculous analogies between going Mad and catching the flu or having diabetes: It is just some bodily dysfunction! It’s just some physiological imbalance! Nothing to see here! Move on! Philosophers tend to at least be curious and interested in Madness and all the philosophical problems that it raises.
You have indicated to me that, at one time, you objected to the “social model of disability.” I assume that you meant the British social model of disability which distinguishes between impairment and disability. Was this distinction the source of your disagreement with the social model?
I must admit, at the time that I objected to it, I also knew very little of disability studies and the philosophy of disability. I had mostly come across something called “the social model of disability” in discussions with laypeople. My simplistic understanding of the social model at the time was this: people who embrace the social model think that society is to blame for their suffering; in a tolerant and prejudice-free society, they would feel fine, despite being different from the majority in various ways.
My understanding was that for physical disabilities, the social model stressed the importance of, for example, wheelchair ramps everywhere so that wheelchair users will not suffer from lack of access; public signs and posters that include braille signage so blind people can read them too; stuff like that. In other words, when everything is made accessible, physical disabilities cease to be a problem and people will not suffer from having them. For psychiatric disabilities, it is all about erasing stigma and prejudice, because that is what makes the psychiatrically disabled suffer, according to this model. The medical model, on the contrary, claims that the conditions themselves cause suffering.
This brief description fits how these two models had been presented to me in laypeople discussions, sometimes driven by people who were themselves disabled. Autistic and other neurodivergent people would say that there is nothing wrong with their minds, the only problem is that society does not allow us to be ourselves, to be different.
On hearing such claims, I thought that, sure, this formula might be true for some people, but certainly not for me. I suffer because reality keeps shifting around me. I have frightening hallucinations from time to time. I am often absolutely terrified of demons trying to kill me. Surely, this situation is a million times worse than any prejudice that I have encountered from other people and any social stigma. For these reasons, I thought that even if some people mostly have issues with an intolerant society, my own suffering stems from inside my brain.
I began to change my mind after getting my current job. When I no longer had to do a long weekly commute, no longer had to apply for jobs and go on interviews, had job security, and had a high enough salary that I got financial security–in short, when my entire life had become far less stressful–my frightening symptoms eased up a great deal. Then, I went to a great psychodynamically trained psychotherapist, who made me realize that a lot of old internalized Madness stigma of which I was hardly aware had prevented me from coping in the best possible way with my ongoing bizarre experiences.
Nowadays, I am still kind of Mad. I think that I will never be sane and normal. But I feel so much better. So I have come to think, after all, that most of my suffering stemmed from external factors–it was just more complicated and more indirect than can be summed up in a claim such as “other people show prejudice towards me and that makes me feel bad.”
Sofia, you have plans to embark on a collaborative project whose subject matter would be suffering and people’s explanations of it. How would you describe what suffering is and what are the aims of the project?
The group consists of me, Zsuzsanna Chappell, August Gorman, and Polaris Koi. Unfortunately, since we last talked about this, my research group’s funding application has been rejected. Still, us not getting any funding from next year onwards does not mean that we have scrapped these plans for good. We still think that this project is important and worth pursuing.
Suffering can be a broad term. Perhaps it is most often associated with physical pain, but our group would be concerned with Madness, neurodiversity, and psychiatric disabilities in this project, and thus more focused on mental suffering. Mental suffering is still a pretty broad category–it can take the form of fear, terror, depression, anhedonia, grief, and so on. It can be intense or more low-key, like “feeling blue,” day in and day out. Psychiatric patients often suffer from some or more of the above.
Some inspiration for the project derived from a shift in my own thinking from seeing my supposedly dysfunctional brain as the source of my woes to blaming external forces more, as I have explained. This radical shift in my own views made me seriously ponder the issue.
As I already touched upon, different psychiatrically-disabled people have different explanations for their own suffering. Some of them explain it by reference to some hypothesized brain dysfunction, imbalanced neurotransmitters, or the like. Others believe that society is to blame for both their psychiatric symptoms and for their struggles and suffering. A third group argue that they were born neurodivergent, so their differences are essential to whom they are, but they suffer because they live in a society in which they are not allowed to be different. Some have very mixed views.
Now, we, in the research group, believe that we have both ethical and epistemic pro tanto reasons to accept people’s own explanations of their suffering. In brief, it is respectful to accept people’s own explanations, and we often know ourselves best. Still, people can be mistaken, as my own case shows. Of course, I take my current view to be correct—otherwise, it wouldn’t be my current view—which means that I was mistaken before. Regardless, both my former and current view cannot be correct. Moreover, accepting mistaken explanations and acting on them, perhaps most notably when it comes to treatment decisions and policy decisions, can have negative consequences. Both ethical and epistemic reasons can thus point in both directions: both towards accepting people’s self-explanations of their suffering and to doubt them. In the project, we want to analyze what those reasons are and how to weigh them.
Sofia, how would you like to end this interview? Would you like to say anything more about something that we have discussed? Is there anything that you would like to talk about that we have not touched upon? Do you want to recommend any articles or other materials related to something you’have mentioned in this interview?
You should read the articles that the rest of my research group put out, because they are all brilliant!
Furthermore, I hope and believe that we are seeing a trend towards more and more philosophers being open with and openly drawing on their lived experience of Madness and neurodivergence. I do not have anything against sane philosophers doing philosophy of psychiatry or writing about, e.g., moral responsibility and mental disorders per se.
Still, Paul Lodge made the following apt comparison once: There is nothing wrong with male philosophers who write and publish feminist philosophy. But let’s imagine that feminist philosophy was completely dominated by men–though many of them were honestly interested in improving the lives of women (and non-binary folks), and tried to draw on women’s autobiographies, discussions that they had with women, and so on, in their writings. Let us imagine that almost no women published in the field, and among those who did, many published everything under their initials plus surname or under a gender-neutral first name to hide their gender. Let us imagine that papers in feminist philosophy always talked about women in the third person and were not merely written by men, but also clearly aimed at other men who took an interest in the plight of women.
This set of circumstances would be a problem; and that is the kind of problem that we currently have in philosophical fields that deal with Madness. But as I said, I believe and hope that this state of affairs is changing.
Finally, thanks so much for inviting me to be interviewed in this series.
Sofia, thank you so much for your fascinating remarks throughout this interview. You have raised a set of issues from a certain perspective that, I am sure, many philosophers have likely never considered in the past. Your interview makes an important addition to the series archive.
Readers/listeners are invited to use the Comments section below to respond to Sofia Jeppsson’s remarks, ask questions, and so on. Comments will be moderated. As always, although signed comments are preferred, anonymous comments may be permitted.
The entire Dialogues on Disability series is archived on BIOPOLITICAL PHILOSOPHY here.
From April 2015 to May 2021, I coordinated, edited, and produced the Dialogues on Disability series without any institutional or other financial support. A Patreon account now supports the series, enabling me to continue to create it. You can add your support for these vital interviews with disabled philosophers at the Dialogues on Disability Patreon account page here.
Please join me here again on Wednesday, January 21st, for the ninety-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 firstname.lastname@example.org. 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.