Epistemic Justice in Understanding Eating Disorders

Epistemic Justice in Understanding Eating Disorders

Eating Disorder Awareness Week (EDAW) 2024 will take place in Korea from February 28 to March 5, with all seven sessions examining the theme of Epistemic Justice.

The question of how to reflect the lived experiences of the eating disorder sufferers, and those of the mental health patients themselves into the academic discourse is (especially more fiercely in some parts of the world) being discussed. As for the obscure goal of ‘recovery’ from eating disorders, too, the questions of how we can define the ‘recovery’ and how we can know if one is recovered provokes very multi-layered discussions. Disability Studies lends us new language, and Epistemic Injustice has become a critical topic. Especially regarding the epistemic authority of one’s own experiences, the Canadian social philosopher Abigail Gosselin summarised that first-person accounts of experiences can provide perspectives that are otherwise inaccessible, or only accessible in a deficient or distorted way, and can illuminate details and nuances that third-person observations may miss. And first-person experiences of marginalization in particular provide special knowledge for understanding the nature of power relations and can illuminate aspects of marginalization that are difficult to grasp through abstract theorizing or third-person observation alone.

— From the final pages of ‘Swallowing Practice’

Different (In)Justice

Epistemic injustice is a concept I explore in my memoir, Swallowing Practice, and which I’ve pondered for a long time. Lately, in Korea, I have observed a noticeable surge in alternative thoughts. One prominent stream focuses on the illness narratives of lived experience, emphasizing the long-overlooked voices of individuals, mostly suffering from chronic or idiopathic diseases, and their right to ‘being ill well’ in our neoliberal, ‘no-one-backs-you-up’ society.

Another noteworthy movement is the critical psychiatry / Mad Studies movement. Young researchers and activists are challenging conventional narratives about antipsychotic medications and involuntary psychiatric hospitalization, along with individuals with lived experiences of psychosis, their families, and a few civic mental health support centres. Notably, this movement gained momentum after the translation of Mohammed Abouelleil Rashed’s Madness and the Demand for Recognition was published recently. Collectively, we are delving deeper into the question of ‘epistemic injustice’. For the moment, we are all relatively small movements, existing primarily within the minority of book-reading individuals in society. I don’t believe any of our arguments will gain widespread recognition in Korea anytime soon. However, from small beginnings, big things can grow.

I have struggled to dispel my reservations about the two neighbouring movements, the illness narrative-focused rights-to-health faction and the critical psychiatry faction, even though, in the grander scheme of things, the three streams of our efforts share common ground. The “three streams” mean the three of us – the Rabbits in Submarines Collective, our eating disorders lived experience faction, and the illness narrative one and critical psychiatry/mad studies one. In essence, we are all in a kind of lived experience movement, developing alternative narratives from the sufferers themselves instead of the experts.

Many sick people perceive eating disorders as self-inflicted faux diseases or Affluenza, causing the illness narrative faction to overlook our initiatives for a considerable time.

On the other hand, people in the critical psychiatry/mad studies circle, confident that their definition of ‘(critical) psychiatry’ encompasses every existing diagnosis and that ‘madness’ can represent all psychological troubles, assume that we are also eager to be recognized as we are, not as people with anorexia or bulimia, but with our symptoms and troubles. However, I repeatedly realize that my frustration lies not in seeking mere recognition but in the earnest interrogation of society itself.

 Encounter

An amusing incident unfolded recently. On an early December Sunday, I found myself seated on the stage of a local cinema for a special talk following the screening of The Table for Two (dir. Boram Kim, 2022). Joining me were the director, Boram Kim, Chae-young, the protagonist of the film, and Sunmin, our artistic activist and expectant mother. We engaged in a lively conversation, addressing questions from the audience.

During the discussion, a man seated nearby — a rare male viewer of the film — raised his hand and posed a thought-provoking question. He inquired, “From what I understand, many people are arguing that mental illness is not a disease but rather an identity, or that we should reconsider the F codes (the disease classification assigned for mental illness) altogether. However, you’re asserting that individuals with eating disorders have historically struggled with proper diagnosis and treatment. Why do you hold this perspective?”

Stepping in, I responded, “You’re referring to the critical psychiatry movement…” He nodded in agreement. I continued, “I believe we hold different perspectives. The recent Rashed book and its readers argue that ‘madness’ is an identity for some, but we don’t view anorexia or bulimia as our identities. However, we also don’t perceive eating disorders merely as diseases in medical terms; we see them as social-political issues. Our aim is not to claim eating disorders as our identities, but rather to understand why and how we’ve been affected by the syndrome.”

The surprise occurred as I was leaving the building with my friend who came to see the film with me. A young man approached, bowed, and smiled. To my astonishment, he was the questioner and that very resident doctor who co-translated the Rashed book! While we had already communicated through emails, this was our first in-person encounter. I responded to his greetings, leaving with a flushed face due to a mix of embarrassment and remorse towards him. Fortunately, this gracious young man promptly sent me an email, mentioning that he had been translating Miranda Fricker’s classic, Epistemic Injustice, into Korean. He had raised it because of our earlier correspondence.

In the proposal for our second EDAW, I intentionally typed ‘Epistemic Justice’ on the first page instead of ‘Epistemic Injustice.’ I wanted us to be portrayed as positive agents, whole and intact first-person narrators, rather than defenders responding to others. I intended to articulate our vision and deliberation about justice, rather than emphasize the injustice inflicted upon us. I also wanted to take ownership of the notion as a lived experience group, rather than relying on professional organizations that might represent us.

Personal Stories to Sell

Our esteemed feminist advocate, Dr Heejin Jeong, once lamented that what we witnessed was the downfall of the seemingly invincible patriarchy, brought about by neoliberalism. She referred to the pervasive trend of commodifying oneself as a brand and competing to be the best sold among sophisticatedly staged personal narratives. Now, it might be challenging to believe that the voices of sufferers, women, the mad, and the broke are rarely heard. Like everything else in life, the surge of personal narratives has brought both positive and negative outcomes. As far as I recall, small-scale independent or individual publishing began to flourish around 2016-17. This occurred when I started working as the editor-in-charge of a freshly launched imprint brand, and I vividly remember the intriguing movement I witnessed then.

Around that time, I published my writings — short autobiographical essays and a poem — in a contemporary independent literary magazine called The Influence. (What a symptomatic title! Other magazines had names like Shojo Literature, Pillow, and Further Away.) My articles, without the prospect of being accepted into the official realm of Korean literature for a long time, finally found a little corner that didn’t reject them! They existed outside the official sphere, but I was okay with that. Consequently, officially rejected amateur writers began sharing their variety of stories publicly.

One notable effect was that now we could gain insight into the backstage areas of various jobs, industries, and personal lives that had been generally unknown to the broader audience or laypersons. A police officer, cleaning personnel, nurse, real estate advertising agent, elementary school teacher, funeral director, librarian, unsuccessful beauty pageant candidate, and government clerk wrote books based on their life stories. Then, mental illness survivors emerged. This time, the stories were written by those survivors who could consciously identify themselves as writers, marking a significant difference from diaries or letters found and published as case studies by others. Understandably, most of the diagnoses that these writers had taken were alexithymia, depression, anxiety, or alcoholism.

Probably due to this trend, I was able to publish my manuscript, more than a decade old, as a  memoir with a reputable publisher in August 2021. Dr Heejin Jeong was one of the two women writers who generously wrote a recommendation for the cover of my book. She mentioned that what I pursued in my writing was “discovery” rather than “recovery,” and I felt grateful, although unsure if I agreed with her.

Discovery vs. Recovery

A few months later, Dr Jeong’s essay was published in Littor, a bimonthly literary magazine in a major publishing group. Titled The Era Where Everyone Can Be a Writer: Ego and Writing in the Neoliberal Era, the essay made a compelling argument:

In Korean society, the discourse around ‘democracy’ often conflates it with ‘popularization,’ and there’s a prevailing assumption that ‘equality’ means ‘identicality’ rather than ‘justice.’ Consequently, the phenomenon of everyone becoming a writer in the name of popularization requires careful analysis. This trend is intricately linked to the political-economic interests of the entire cultural industry and has far-reaching implications for our social community, writers, publishers, and online bookstores alike.

Fundamentally, my question revolves around the desirability of the surge in popularization, the publishing boom in personal narratives, and the saturation of ‘easy-read’ books. The era where everyone debuts as a writer can be seen as a neoliberal phenomenon. Those who were socially marginalized have risen to the status of ‘individuals’, gaining visibility and facilitated by infrastructure such as online bookstores and social networks functioning as ‘personal media.’

It is misguided to assert that writing alone equates to self-growth or naturally leads to healing.

True self-growth depends on the ‘process’ and should be evident in the content of the book. Living in a ‘no-one-backs-you-up’ society, characterized by mudslinging and cutthroat competition among the deprived, remaining and claiming oneself ethical becomes almost impossible in the neoliberal culture. Thus, only the ‘victims’ can be considered legitimate ethical subjects. In neoliberal society, extreme meritocracy coexists with victimization narratives, giving rise to the phenomenon known as ‘victim cosplay’ — forcing us to confront the challenges and fears associated with writing once again.

Intensely inspired yet somewhat embarrassed, I endeavoured to prioritize the significance of critical argument over personal pride or ego. Later on, Dr Jeong clarified that my book wasn’t the specific target of her criticism, although I remain uncertain about complete relief from her assertion. One thing is clear — not every personal (illness) narrative shares a common purpose. I believe narratives from individuals with lived experiences of illness are crafted with diverse intentions and give rise to different actions.

This Me Here is not the Final Knowledge

We can delve into the complexities of ‘epistemic (in)justice’ across various layers and dimensions. Regarding the classical epistemic injustice faced by individuals with lived experiences in relation to experts, we were unable to attend the government audit for the healthcare and welfare agenda on October 18. Although my contact with Rep. Nam and discussions with her chief secretary led to a small achievement, the secretary suggested appointing Prof. Kim as our delegate, believing that government officers from the Ministry of Health and Welfare would listen — at least more attentively — to an ‘expert.’ But later, I discovered that on the same day, a young father of a child with a rare disease was also invited as a reference witness. It appears that medical professionals come first, followed by men with lived experiences. Our turn has not arrived yet.

However, epistemic injustice surfaces in a more intricate manner, just below the aforementioned layer. Rita, a wild and prodigious art critic surprisingly found to be a rare earnest reader of my book, once confessed, “I don’t think it’s all good that we are witnessing a surge of illness memoirs from women writers.” We were seated in a small, dimly-lit café across a little table after lunch at a homely restaurant near our Alma Mater and her home. It was summer, and this was our first in-person encounter after a restrained bout of online communication. With my seemingly average office worker and conformist appearance, I was about 10 years her senior. In contrast, this close-cut, yellow-haired young woman of small build seemed aloof, with flashy tattoos on her arms.

However, she was a person with an incessant whirlwind in her mind, and we shared a sense of dissatisfaction and discomfort with the proliferation of personal narratives around us. We yearned for more, even if some might argue that our expectations were too high. We desired greater rigour, despite potential accusations of elitism. In essence, we believe that we write not merely to seek approval as exemplary cases for advocacy. Dr Jeong often cautioned me. “Be cautious not to offer yourself as a research object for academic researchers. Be wary of relinquishing your agency to research yourself.”

• Rita has agreed to host one of the seven sessions for Korea’s upcoming EDAW, with ‘Auto-theory’ her likely topic. She will discuss what it means to write about one’s life.