Arunima A. Vasudevan examines the need for an academic distinction between ‘memoirs of’ and ‘memoirs about’ schizophrenia to better account for complexity of expression within the experience.
Can schizophrenia modify a genre?
I received several questions after a presentation on my doctoral research about memoirs written by people with schizophrenia. Still, the one that stayed with me was, “Are the selected works schizophrenic memoirs (memoirs of schizophrenia) or memoirs about schizophrenia?” I did not take long to consider; the answer was definitely ‘memoirs about schizophrenia.’ But it left me wondering if I had considered that distinction enough.
Schizophrenia is characterised by a cluster of symptoms. These include delusions, hallucinations, disorganised speech and behaviour, and negative symptoms—the loss or reduction of abilities that are usually present—such as diminished emotional expression (American Psychiatric Association, 2022). These symptoms, which cause loss of touch with reality and incoherent speech, are known to impact sufferers’ narrative capacity.
Angela Woods discusses how the cognitive and affective impairments of schizophrenia cause scientific disciplines to consider the disorder anti-narrative, as well as the way in which the stigma and discrimination engendered by this consideration stifles sufferers’ stories within the sociopolitical domain (2013, 38-9). Therefore, when individuals with schizophrenia write and publish memoirs, readers may be confused about what to expect from these works. The question I ask here acknowledges and attempts to address this confusion.
When I say I have selected ‘memoirs about schizophrenia’ rather than ‘memoirs of schizophrenia’ for my doctoral study, the former term denotes texts in which the larger narrative does not embody the experience of schizophrenia, even if parts of the work do. Excerpts about psychotic episodes are placed within a coherent narrative structure as the memoirs reflect on the chaotic experience from a later stage of life, usually during remission or recovery. Conversely, the latter term, ‘memoirs of schizophrenia’, refers to narratives where delusion and reality cannot be separated, and/or the chronology and coherence are disorderly.
The distinction, whatever terms one uses to address them, is real. I adopt ‘memoirs of schizophrenia’ to represent the genre as implied by ‘schizophrenic memoirs,’ as the term ‘schizophrenic’ raises concerns among many in the field. Although ‘schizophrenic’ is used by authors in their memoirs, the politics surrounding it demand a discussion that this piece’s scope cannot accommodate. Irrespective of the genre, I classify the first-person accounts as either psychotic or conventional, the former embodying the symptoms while the latter merely discusses them.
Why does this distinction matter?
The perception that narratives of people with schizophrenia are nonsensical and incoherent has prevailed for years. If someone with schizophrenia writes meeting conventional standards, their diagnosis is often called into question.
Nineteenth-century asylum periodicals in Britain and America often claimed to be edited by patients, including their contributions for a public readership. Mila Daskalova notes that the editorial process of asylum periodicals was complex, with most periodicals having two editors: a physician and a patient (2022, 132). The physician at least minimally reviewed the pieces the patient-editors selected from others’ contributions and wrote copies for them. The patient-editors were gatekeepers of literary standards, equally driven to please fellow patients, staff, and outside readers while showcasing the best writing, even if that meant accepting only a limited number of contributors (132-7).
Paradoxically, asylum superintendents saw a well-written piece as a demonstration of sanity, thereby leading to the release of the patient. Meanwhile, the same piece raised doubts among readers about the author’s identity. In one of the periodicals, The Opal, the asylum administrators placed conventional pieces alongside disordered ones to prove that the pieces were not fabricated, risking reinforcement of the perception that inmates were not capable of rational thought (Reiss, 2008, 40). As most pieces were published anonymously, it becomes difficult to credit the patients for their expressions, regardless of their adherence to conventional standards.
Moreover, the irrationality of the patient’s writing had consequences beyond an editor’s rejection. These included the withdrawal of their privileges at institutions, such as detainment or being barred from writing for the periodical (Daskalova, 2022, 133). This practice suggests a preference for conventional pieces and a conscious self-censorship among the patients to retain or secure their rights.
My dissertation does not seek to uphold this preference. Rather, it represents one way of expressing the lived experience of schizophrenia. I write this piece to emphasise that psychotic first-person accounts, conventional first-person accounts, and creative pieces should be equally valued. A conventional expression should not risk shame on people who are not in a position to do the same. And a rational and coherent presentation should not lead to doubt regarding diagnosis or a denial of suffering.
My classification of the memoirs into these categories is purely for academic discussion, although, in truth, it is the authors who determine the boundaries. The difference can be either a conscious creative decision or the result of circumstances during the work’s production. More than a distinction of genres, this categorisation denotes the complexity in expressing while living with schizophrenia that is often generalised as completely irrational or incoherent.
Memoirs About Schizophrenia
The central argument of my dissertation is that the selected memoirs were consciously designed to influence knowledge about schizophrenia. I demonstrate how these authors engage, directly or indirectly, with psychiatric and social discourses about schizophrenia. I discuss how they approach the diagnosis and redefine it based on their experience; how they frame a self-narrative despite cognitive impairments and language deficits; how each of them perceives the illness differently; and how they raise their voices to reclaim the recognition of the patient as a knower.
Given the difficulty many authors face in establishing authorship of their first-person narratives of schizophrenia and the credibility deficit stemming from the irrationality of the symptoms, my research, which establishes the authors as knowers, might seem problematic unless I delineate the conditions under which such a writing is possible.
The possibility of recovery or remission with or without psychiatric medicines allows for a greater capacity to write a conventional memoir. The authors of the selected memoirs were people exuding determination and passion in expressing themselves through words, whether academically or creatively. Access to resources and opportunity to flourish in their niche, in some capacity, facilitated their writing a memoir that meets conventional standards of publication.
Taking all these factors into account, I study the selected memoirs as relatively rational representations of lived experience to support the argument that certain schizophrenia memoirs are envisaged to influence the knowledge about the illness. In the future, I intend to study memoirs of schizophrenia to address different research questions about the genre.
Memoirs Of Schizophrenia
The books that I have identified to represent ‘memoirs of schizophrenia’ include: Fallen, Standing: My Life as a Schizophrenist (Reshma Valliappan, 2015), and Under Cover of Demons: A Memoir about Paranoid Schizophrenia Disorder (Geula Salomonova, 2014). Although I read these memoirs while exploring primary texts for my doctoral research, I decided not to include them in the dissertation because they did not seem intended to influence knowledge about schizophrenia directly. They are relatively raw representations of the disorganised nature of the illness experience.
Valliappan’s publisher, Women Unlimited, says, “It was sent as a series of emails, accompanied by text, every week or every few weeks or months, depending. It was often interrupted. It rambled and digressed, was written mostly in first person, but sometimes in third. It followed no predictable chronology” (Valliappan, 2015, v). The book was not rewritten to meet the conventions of publication but was instead presented as a collection of these ramblings. Similarly, Geula Salomonova’s memoir covers only the psychotic phases of her life from ages 15 to 36 as she experiences them. There is no distinction between reality, delusions or hallucinations.
Conclusion
At the beginning of my research, I assumed the distinction between memoirs about schizophrenia and memoirs of schizophrenia was not important. Course specifiers that demonstrated the illness’s episodic nature in the Diagnostic and Statistical Manual and recovery rates demonstrated that people with schizophrenia can produce incoherent speech or writing during psychotic episodes and conventional expressions in periods of remission. Therefore, a distinction between the two kinds of writing seemed unnecessary.
My perspective changed as I received questions about authors’ agency and the rationality of the texts at various points in my research; stigma and doubt persist even in academic circles. The complexity of the experience of schizophrenia cannot be captured in a single memoir.
I write this piece to emphasise that my doctoral research focuses on memoirs about schizophrenia rather than memoirs of schizophrenia, not from a need to prioritise one category over the other, but rather, due to the nature of my specific research questions. I conceptualised this distinction for research, and the authors of the selected memoirs do not endorse this terminology or use it in the sense I do. For instance, Mind without a Home: A Memoir of Schizophrenia is a memoir about schizophrenia, as the narrative is largely conventional, although the title states the opposite. Under Cover of Demons: A Memoir about Paranoid Schizophrenia Disorder is a memoir of schizophrenia, despite the title using ‘about’.
Regardless, I believe this distinction is crucial in the academic context for the reasons discussed above, as it helps account for complex lived experiences and their expressions. I do not suggest that the authors adopt this terminology hereafter; they are entitled to refer to their work however they see fit. But I consider the distinction helpful for gaining a deeper understanding of these representations, however the author refers to the work.
About the author
Arunima A. Vasudevan recently submitted her doctoral dissertation in English Literature at the English and Foreign Languages University, Hyderabad, India. Her research interests are in the medical humanities and the philosophy of mental health (including psychiatry, psychology, neuroscience, and cognitive science).
References
American Psychiatric Association. 2022. Diagnostic and Statistical Manual of Mental Disorders. 5th ed., text rev. American Psychiatric Association.
Daskalova, Mila. 2022. Printing and Periodical Culture in the Nineteenth-Century Asylum. PhD Diss., University of Strathclyde
Jääskeläinen, E., Juola, P., Hirvonen, N., McGrath, J. J., Saha, S., Isohanni, M., & Miettunen, J. (2013). A systematic review and meta-analysis of recovery in schizophrenia. Schizophrenia Bulletin, 39(6), 1296–1306. https://doi.org/10.1093/schbul/sbs130
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Saks, Elyn R. 2007. The Center Cannot Hold: My Journey through Madness. Hyperion Books.
Salomonova, Geula. 2014. Under Cover of Demons: A Memoir about Paranoid Schizophrenia Disorder. Balboa Press.
Steele, Ken, and Claire Berman. 2001. The Day the Voices Stopped: A Schizophrenic’s Journey from Madness to Hope. Basic Books.
Valliappan, Reshma. 2015. Fallen Standing: My Life as a Schizophrenist. Women Unlimited.
Woods, Angela. 2013. “Rethinking ‘Patient Testimony’ in the Medical Humanities: The Case of Schizophrenia Bulletin’s First Person Accounts.” The Journal of Literature and Science, 6 (1), 38–54. https://doi.org/10.12929/jls.06.1.03.
