Who Gets to Represent Schizophrenia?

I have been following several social media influencers who document life with schizophrenia for some time now, and I have become increasingly frustrated by some of their decisions.

In a recent interview, Kody Green, who describes himself as a schizophrenia advocate, challenged person-first language and expressed his preference for describing himself as schizophrenic. He argues that calling himself schizophrenic does not reduce his identity to a diagnosis because he is much more than his schizophrenia. He nevertheless seems surprised when people suggest that he adopt person-first language.

As a linguist, my take on this at the level of language is quite straightforward. ‘Schizophrenic’ is an adjective. In the phrase ‘I am schizophrenic’, the adjective is predicated directly of the person. In isolation, the construction characterises the subject through the qualities associated with schizophrenia.

Now, predicative adjectives are common in English, and in most cases it is clear that speakers are not consciously reducing their entire personhood to a single characteristic. When someone says ‘I am male’ or ‘I am mixed heritage’, we do not immediately assume that they believe their identity begins and ends with that descriptor. Context is also important. Saying ‘I am white’ in response to a demographic survey is more neutral than saying ‘I am white’ in response to a question about one’s views on immigration.

But ‘schizophrenic’ is qualitatively different from many other predicative adjectives because its cultural baggage is so heavily loaded. Dr James Balfour conducted an entire PhD on media representations of schizophrenia and identified a tendency for the word ‘schizophrenic’ to appear in newspaper reports where a person with schizophrenia had engaged in violent or criminal behaviour, while person-first language was more likely to appear in articles celebrating the artistic talents of people with mental illness. Society carries a heavy stigma towards schizophrenia, and so the risk of totalising a person’s identity through the phrase ‘I’m schizophrenic’ is not purely a grammatical issue.

There is an argument for reclamation here, too. We could argue that Kody is resisting person-first language as a way of asserting control over how people with schizophrenia are perceived. Linguistic reclamation is a legitimate phenomenon, with notable examples such as Richard Pryor coming to mind. Reclamation has had demonstrable cultural and social effects: some positive, some negative.

We could extend this argument to SchizoKitzo, who produces YouTube videos about life with schizoaffective disorder. ‘Schizo’ is a slur and a pejorative, and decisions about social media branding are usually intentional and strategic. While I do not doubt that SchizoKitzo may be operating from a position of reclamation, people with large audiences have a significant responsibility to consider whether their messaging challenges stigma or inadvertently reproduces it.

My concern with using a slur in public-facing social media content intended to reduce stigma is that reclamation efforts can fail in ways creators do not anticipate. By building an online identity around a slur, and gaining popularity while doing so, the slur enters public discourse more often than it otherwise might. More people type ‘schizo’ into search bars, ironically while looking for content ostensibly intended to challenge stigma. There are also legitimate questions about whether the shock value and memorability of such a username form part of the branding strategy.

I think building a public brand around the word ‘schizo’ is misguided. More strongly, I think it is reckless. Reclaiming a slur for oneself is one thing; deliberately building a large public-facing identity around it is another. The latter has downstream consequences for other people with schizophrenia who did not consent to that reclamation and who may ultimately have to live with the language it helps normalise.

Kody Green also sells merchandise, including hoodies and T-shirts carrying slogans such as ‘my mental illness makes me funny’. I expect that Kody is well-intentioned, but I wonder whether he has anticipated that his brand of advocacy may not be particularly appealing to everyone living with schizophrenia.

I am personally quite sensitive to the idea of other people laughing at me. Merchandise that appears to connect serious mental illness with being an object of humour is not something I am interested in buying or wearing. There is, of course, another way to read the slogan: that people with mental illness may develop comedic talents as a direct result of their illness. This is a more charitable interpretation, but one I still find problematic. We should be cautious about glamorising serious mental illness or framing it as a route towards developing socially desirable traits. Whichever way I read the slogan, I see problems.

My broader concern with prominent mental health creators is that some appear to engage in forms of advocacy that make sense to them as individuals, without enough care or attention being given to the downstream effects of what personally feels right to them. SchizoKitzo may value her reclamation of a slur. Kody may genuinely believe that his foray into stand-up comedy is a direct by-product of his illness. But these personal interpretations travel far beyond the living rooms and bedrooms in which much social media content is filmed.

There are real consequences for people who are extremely unwell: people who are often too busy struggling with intense symptoms to consider picking up a camera and ensuring that their microphone and ring lights are arranged just so for content creation. Those too unwell to make content of their own can still feel the effects of content produced by those well enough to make it.

This gap between the unseen majority and the visible minority carries enormous responsibility, and I do not feel that responsibility is being taken seriously enough.

I see a related problem in the public trajectory of Lauren Kennedy West, a YouTuber who gained a large audience through her videos about life with schizophrenia. She later pivoted towards claims about the ketogenic diet and schizophrenia and now offers public speaking and consulting services connected to metabolic approaches to mental health.

Research interest in ketogenic and other metabolic interventions for serious mental illness is growing, but the evidence base remains developing. That distinction matters. Early research interest is not the same thing as established efficacy, and personal recovery narratives are not substitutes for robust clinical evidence.

When a creator has built a strong parasocial relationship with a large audience, claims about recovery and treatment can carry enormous weight. Some viewers may interpret a prominent creator’s experience as evidence that they, too, should alter or discontinue established treatment in favour of an intervention whose efficacy is not yet well established. That possibility should be taken seriously, particularly when the audience includes people living with severe mental illness.

Creators in this space have enormous influence and, with it, enormous responsibility. My concern is not that people with schizophrenia should be denied autonomy over how they describe themselves, build their identities, interpret their experiences or discuss their recovery. My concern is that personal choices cease to be purely personal when they are broadcast to large audiences and deliberately turned into public advocacy, brands, merchandise, services and treatment narratives.

The most visible people with schizophrenia are, almost by definition, those well enough to become visible. They are able to film, edit, publish, promote, speak publicly and build audiences. Meanwhile, many of the people most severely affected by schizophrenia remain largely absent from public discourse.

Yet they, too, live with the consequences of how schizophrenia is represented.

That is the responsibility I think too many creators are failing to take seriously.