What does “authentic” representation mean for psychosis and psychotic disorders in fiction?

Photo by Matthew Henry

Psychosis and psychotic disorders have long been a curiosity for people without lived experience. Being diagnosed with a psychotic disorder carries a heavy stigma, partially due to the way it has been portrayed in the media.

For those unfamiliar, “psychosis” can describe a whole host of experiences, however, here is one definition from mind.org:

“Psychosis (also called a ‘psychotic experience’ or ‘psychotic episode’) is when you perceive or interpret reality in a very different way from people around you. You might be said to ‘lose touch’ with reality. The most common types of psychotic experiences are hallucinations, delusions and disorganized thinking and speech.”

An experience with psychosis can happen to anyone, however, some people who experience psychosis may be diagnosed with a mental illness like a psychotic disorder. Psychotic disorders have psychosis as the main symptom (the most well-known and commonly portrayed in fiction being schizophrenia).

As a writer who has been diagnosed with a psychotic disorder, I’ve always been curious as to what sort of guidance people without lived experience use when writing characters who experience psychosis, or more specifically, characters who have been labeled with psychotic disorders. Out of curiosity, I googled, “How to write a character with psychosis.”

The first result was an article from a website called “The Horror Tree,” a resource for authors writing horror stories — not a great first sign. The article, titled “How to Develop a Character with Psychosis,” encapsulated a significant problem with fictional representations of psychosis within the first paragraph:

“There’s no shortage of books featuring characters who suffer from mental illnesses like schizophrenia and psychosis. Fantastic horror novels such as ‘The Shining’ and ‘Shutter Island’ shined much-needed light on mental health in their gripping storylines — both of which brought the characters to life by portraying their moods and behaviors as accurately as possible.”

Personally, I wouldn’t consider a movie about someone trying to murder their family having “shined a much-needed light on mental health.” The association of psychosis with inherent violence is probably the most prominent trope found in fictional representations, and the most harmful one. In Violence and mental illness: an overview, Heather Stewart describes the impact of these media portrayals:

“Public perceptions of the link between mental illness and violence are central to stigma and discrimination as people are more likely to condone forced legal action and coerced treatment when violence is at issue…The public are no less accustomed to ‘experiencing’ violence among the mentally ill, although these experiences are mostly vicarious, through movie depictions of crazed killers or real life dramas played out with disturbing frequency on the nightly news. Indeed, the global reach of news ensures that the viewing public will have a steady diet of real-life violence linked to mental illness. The public most fear violence that is random, senseless, and unpredictable and they associate this with mental illness.”

To further highlight how the association between mental illness and violence is socially constructed, Stewart mentions that prior to 1980, people with mental illness were often perceived as less likely to be violent, and adds:

“…members of the public undoubtedly exaggerate both the strength of the relationship between major mental disorders and violence, as well as their own personal risk from the severely mentally ill. It is far more likely that people with a serious mental illness will be the victim of violence…too much past research has focused on the person with the mental illness, rather than the nature of the social interchange that led up to the violence.”

After combing through articles and forums about writing “psychotic” characters, more people suggested learning from textbooks, mental health professionals, psychosis simulations, and movies rather than from people with lived experience (although a few did). Several articles tended to just reiterate the DSM definition, with the better ones mentioning a few points about stigma and misconceptions.

While using the DSM as a benchmark might feel comforting to a writer without lived experience, rigid psychiatric definitions of “psychosis” and “psychotic disorders” can limit how a character’s complex experiences are expressed and understood. Being able to incorporate that type of nuance, I believe, starts with at least consulting people with lived experience — or better yet, prioritizing the works of people who do have that experience.

In 2020, Words on Bathroom Walls, a young adult film featuring a protagonist diagnosed with schizophrenia, was released to the praise of film critics for being “sympathetic,” “progressive,” and “authentic” — but no one with lived experience was involved with the creation of the film. They contacted several psychosis-related organizations to promote their film (including one I occasionally volunteer with), but when people with lived experience wanted to discuss both the pros and cons of the movie, they were no longer interested in our participation. This isn’t the first time I’ve written about Words on Bathroom Walls, but I keep coming back to this film because it’s an example of a common phenomenon: people receiving social and financial capital from stories about a marginalized group they are not part of.

In a video review posted on the YouTube channel Living Well with Schizophrenia, Lauren, who describes herself as someone who lives with schizophrenia/schizoaffective disorder, touched on this topic:

“You know, honestly I just find it a little morally reprehensible that Hollywood is creating movies like this without actually consulting with people with lived experience, thus profiting off of mental illness while neglecting to consult the community they’re actually representing.”

The idea of “accurate representation” becomes messy when speaking about something like psychosis (or even specific psychotic disorders), which encapsulates a wide variety of experiences. There is no one accurate representation of psychosis because there is no one accurate definition of psychosis — contrary to what the DSM might lead you to believe. However, there are common tropes that are exoticized for a “sane,” non-disabled audience, or used on-screen because they are visually appealing, while less flashy and provocative experiences are largely cast aside.

For example, on-screen visual hallucinations/visions are often represented as fully formed people rather than say, shadows, even if shadows are more commonly seen. Characters with delusions (who, from my viewing experience, tend to be women) often obsess over the trustworthiness of a romantic partner, which is only one example of a delusion/unusual belief. And disorganized speech? Negative symptoms? Catatonia? Positive experiences with voices and visions? These are rarely shown.

As Rose, who runs the Instagram account @/psychosispsositivity, has mentioned, psychosis can be boring. Not every day is a crisis, and symptoms can even become monotonous. Me sitting in my bedroom thinking about a crime I thought I had committed, would likely be less interesting to watch on the big screen than me running frantically through the airport because I thought the police were chasing me (both things have happened, but the former happened more often).

While psychiatric definitions can limit our understanding of how someone experiences psychosis, representations of psychiatry itself tend to be one-dimensional. Experiences with the mental health care system (both good and bad) might be intimately understood by someone with lived experience while only vaguely understood by an outsider.

One great example of this would be the way psychiatric inpatient facilities are portrayed, which can depend greatly on what genre you’re working under. In young adult fiction, there tends to be what I would describe as an “overly optimistic” portrayal of what being in an inpatient facility is like, with kids listening to music with corded earbuds and walking around with their own shoes on. As Lauren says about the portrayal of hospitalization for schizophrenia in the movie rendition of Words on Bathroom Walls:

“I kind of laughed because it looked amazing, with the exception of when he was in restraints…apart from that, he was in this like, beautiful, huge facility and he had a room all to himself that was bigger than the first floor of my house basically, and had furniture for visitors to come sit on and whatnot, and that is just — that is not what public healthcare looks like, okay? That is not what you can anticipate if you end up hospitalized for a mental health problem.”

Often when analyzing narratives about mental illness, we get caught up in checking off boxes to ensure it’s not a “bad” representation — one that
“demonizes” or one that “romanticizes” mental illness, while rarely questioning what constitutes those categories. When defining good or bad, we tend to focus on if a narrative affirms psychiatric definitions, rather than embracing a more dynamic understanding of lived experience. As a culture, we conflate taking mental distress seriously with taking psychiatry seriously — the assumption being that if we question psychiatry and its rigid biochemical assumptions, then we are automatically downplaying someone’s distress. Why might it be considered “romanticizing” to portray depression or psychosis as meaningful, but showing a psychiatric institution as akin to a 5-star resort isn’t?

Often when analyzing narratives about mental illness, we get caught up in checking off boxes to ensure whether it is a “bad” representation — one that “demonizes” or one that “romanticizes” mental illness, while rarely questioning what constitutes those categories.

Much of the debate seems to center around the sentiment that mental illness should be normalized, but not normalized enough that it’s not considered an illness anymore. While critiquing the seemingly antipsychiatry stance of the show Maniac (which admittedly, I haven’t seen), Katie Dobbs said, “I began to wonder if the show’s creators actually believe in schizophrenia.” This criticism, which comes across as a criticism of the show not taking mental distress seriously, is curious considering that some people diagnosed with schizophrenia are also critical of the label, specifically members of the c/s/x movement, as well as some mental health professionals. Dobb’s review seemed to go back-and-forth between acknowledging the flaws within psychiatry, while also upholding psychiatric assumptions as the only acceptable way of portraying distress.

On the other hand, narratives that show experiences like psychosis outside of a strictly medical model framework can have issues of their own. For example, portraying mental health issues as ambiguous can feel like a liberating way of exploring distress outside of a mental illness paradigm — but it can also feel like a frustrating, ableist attempt at distancing a character from being associated with people who have a heavily-stigmatized diagnosis like schizophrenia. Messages like “the mentally ill character isn’t crazy, the world is crazy,” while rooted in truth about how reasonable responses to our environment become pathologized, can become grating when only used to shock and awe a “sane” audience, or make the character more palatable to them. The grim social consequences of being labeled with a serious mental illness (sanism/ableism, discrimination, incarceration, houselessness, chemical restraints, etc) are often substituted in favor of portraying a rich, white, cisgender, otherwise non-disabled person having a beautiful and haunting experience with madness. Simultaneously, the joy and boring normality of our lives is quickly traded in for showing a horror movie villain stabbing someone in the shower.

There are many ways to experience psychosis, so people with lived experience are also going to have vastly different opinions on what representations are good or bad, accurate or inaccurate. I personally love the way delusions are depicted in Lars and the Real Girl, a 2007 film about a shy man (Ryan Gosling) who believes a life-sized plastic doll is his new girlfriend. While I think Lars and the Real Girl is a beautiful portrayal of someone coping with social isolation and trauma who then starts to heal with community connection, I wouldn’t be surprised if someone else with lived experience was offended by his delusion revolving around a sex doll (when I described the premise of the movie to my mom, she assumed it was a raunchy comedy and was shocked that I liked it so much). However, there is a difference between personally thinking a movie was accurate or inaccurate versus analyzing the larger systemic issue of who has control over these narratives. Expecting a single 200-page book or hour-and-a-half-long movie to show all the nuances and complexities of being labeled with a psychotic disorder isn’t going to happen — nor does it need to. We are not going to get a complete consensus (even from people with lived experience) on what’s good or bad, accurate or inaccurate. Perhaps the more fruitful goal is not to attempt to narrowly define what constitutes accuracy, but rather to value the complexity by centering people with lived experience.

Yet “problematic” messages about mental illness/distress seem to exist everywhere. So how do we contend with media that shows psychiatric facilities as both asylums full of serial killers and also sanitized 5-star resorts; that show mental illness as both a quirky character trait that will disappear by the next episode and also an innate and biochemically defined illness you can never recover from? The common denominator most of these narratives have is that they were (in large part) created by and for people without lived experience — specifically without those from multiply-marginalized social locations who apply a broader political analysis of disability/mental health.

This issue also conjures the larger issue innate to Hollywood (one far beyond the scope of this article): propaganda. What organizations are funding these movies and what are their political motives?

In no way do I expect writers and creators who have lived experience to always be open about it. Trust me, I understand how disability/mental illness can be weaponized against someone (I’m still bitter about my landlord last year who tried to claim I was “paranoid” to get out of a legal requirement). It’s not as simple as “share your story and you’ll be heard” — and some people don’t want to share in the first place.

The reason why I discuss centering lived experience in narratives about psychosis is that it rarely ever occurs to people that those labeled with psychotic disorders might have something to say about our own experiences. We are so far removed from the possibility of centering lived experience that creators are praised for how well they can mimic it (take this movie review of Words on Bathroom Walls, published in Loyola University’s magazine: “It is clear to anyone who watches just how difficult the life of someone with schizophrenia can be, and to portray this without suffering from it personally takes a level of expertise only few can master.”)

In the case of a single author writing about psychosis, who might have lived experience but chooses to be vague to protect themselves, the idea of prioritizing “own voice” stories quickly becomes disconcerting when we consider publishers trying to “verify” the author’s lived experience (a thought that makes me cringe), similar to the trap some queer authors who were not yet out of the closet when their books were published found themselves stuck in.

However, being diagnosed with a serious mental illness often comes with the ableist assumption that you are not “competent” enough to have anything to say about your own lived experience unless you are considered a palatable exception (author with lived experience Esme Weijun Wang talks more about this concept in her essay “High Functioning”). I’m not interested in pressuring people with psychotic disorders to out themselves; I’m interested in challenging the assumption that we are not worthy of our own stories to begin with. People will commodify and profit off of telling our narratives while doing nothing to challenge both the interpersonal and systemic ableism that makes it unsafe or challenging for us to do so.

I’m not interested in pressuring people with psychotic disorders to out themselves; I’m interested in challenging the assumption that we are not worthy of our own stories to begin with.

Some authors will consult “sensitivity readers” regarding books about mental illness. While I obviously think hiring consultants (the bare minimum, in my opinion) is important, it still comes with a host of limitations and potential problems. I can’t help thinking of tokenism when I consider a publisher or author hiring one person from a marginalized group to vet their story for offensive material and authenticity. As I previously mentioned, there is a danger in attempting to use one blueprint for what is good or bad, authentic or contrived, even amongst people who share a lived experience or diagnosis. A multiply-marginalized psychiatric survivor who has had the “schizophrenic” label weaponized against them is going to have a different perspective than an avid supporter of psychiatry who claims it saved their life; someone who hears friendly and comforting voices is going to have a different perspective than someone who has only experienced distressing voices.

The incorporation of a consultant or sensitivity reader also doesn’t change the fact that the ultimate control of the narrative is out of their hands. In a Slate article by Katy Waldman, Sensitivity Reader Elizabeth Rodrick describes one of her experiences:

“Evaluating one manuscript about a woman diagnosed with schizophrenia who escaped from an institution and went on a murder spree, she felt that this was not only cliché; it wasn’t a good representation of what schizophrenic people are like. ‘The character didn’t ring true or deep to me,’ Roderick said. She recommended changes to both the sick woman and the diagnosis. The author protested: ‘If the story didn’t have an antagonist, it wouldn’t be very interesting.’”

Moreover, it is unfair for a sensitivity reader with lived experience to get paid as low as $250 (a rough estimate from the Slate article) to beta read for an author who might make tens (or even hundreds) of thousands of dollars if signing with a major company. In an interview with This is My Brave, Julia Watson, author of Words on Bathroom Walls (the YA book the 2020 movie was based on) said she had a beta reader diagnosed with schizophrenia look over her work. However, I doubt that reader received a fraction of the social and financial capital Waton gained from publishing a popular book that would later be turned into a movie praised for its supposed authenticity.

In researching schizophrenia, Watson mentioned how she “…relied heavily on a handbook that I found in the library for people who had family members who were affected by mental illness.” While it can be valuable to get a parent’s perspective, it’s all too common for a family’s perspective to be centered over the person with lived experience. As Esme Weijun Wang mentioned in an interview with Pacific Standard:

“My issue with books that are written about the schizophrenias is an issue that happens often with books about marginalized groups in general, in particular, marginalized groups with some form of disability. It often happens that it will be a relative of a person with a disability who writes the book, and the voice of the person who actually has the disability kind of gets lost. I’ve read so many books by people with a relative who has some form of mental illness. I’m not saying that’s a story that shouldn’t be told, but I am saying that that’s a story that’s being told a lot.”

I don’t think people who haven’t experienced psychosis or who haven’t been labeled with a psychotic disorder are “not allowed” to write characters who have. That being said, I don’t think many authors have questioned whether or not they should — or whether there is perhaps someone else who could have told this story, but are instead houseless, incarcerated, institutionalized, or simply not taken seriously enough to be given those opportunities (although there are some writers, including myself, who have fortunately found an outlet for their voice).

As far as Hollywood goes, there are few excuses for not doing even the bare minimum. In a film crew of 200+ people, where hiring consultants is commonplace, there is no reason why clinicians should be consulted above people with lived experience. As I mentioned in a previous blog post, it’s pretty insulting to imagine a clinician teaching an actor how to “act” like you, not to mention that a clinician’s perspective will, not always, but most likely reinforce a limited, medicalized understanding of what psychosis and psychotic disorders are.

While stigma and sanism keep many people from being open about their experiences, there are activists, writers, actors, and artists out there who would love for their voices to be considered — contrary to this person’s comment from one of my Instagram posts:

“I figured they found it hard to find someone comfortable enough to talk about their lived experiences. Psychologists have a hard time having someone open up to them, pretty sure opening up to someone wanting to make a movie out of it would be much harder.”

It amazes me that in a post that mentions my lived experience, I am still being told that no one has anything to say about their lived experience.

Around 3 in 100 people in the U.S. experience psychosis at some point in their life and around 1 in 300 people worldwide are diagnosed with schizophrenia. If we could dismantle some of the barriers that keep writers, storytellers, filmmakers, authors, and actors from safely sharing stories from a place of lived experience, imagine how richer and more nuanced our cultural perspective of “psychosis’ could be. That starts by broadening our understanding of what psychosis can mean and challenging the assumptions passed down to us. It also means attempting to dismantle systemic barriers and improve the material living conditions of people labeled with psychotic disorders and other serious mental illnesses.

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Mel Mallory

Mel Mallory

Mad, disabled, and chronically ill writer interested in radical perspectives on psychosis.