Representation Matters

I didn’t know what I was going to write about this week. But sometimes the universe provides. A couple of days ago a writer approached me on Instagram. They said they had been following my work for a while (not true) and wanted to ask for my input on something they are working on.

At first, I was flattered. But things went south very quickly when he mentioned he was writing a Bipolar character who is struggling with love and would like me to share my experiences. Word for word, this is what he said: ‘I just want my reader to see the story through the eyes of someone who knows how it feels’.

I paused for a minute and thought to myself, ‘Well, if you want the story to be representative and from the eyes of someone who is experiencing it, why are you writing it?’ I didn’t want to jump to conclusions though. So I asked him ‘Question: Do you live with any of the diagnoses you write about?’ His silence spoke volumes. He had previously been responding immediately. Days later and I still have heard nothing.

I wish he had of responded. Then I would have told him that if he really cares about spreading the word about mental illness through the medium of fiction, then maybe he should leave it to the experts? I am by no means saying that you have to have a mental illness to write about it. But it sure does help.

This is evident through my STIGMA WATCH series on Instagram. If you don’t follow me on Instagram, (what are you doing? Link here!) Stigma Watch is where I watch a movie that portrays mental illness and review it live on my stories in what I like to think is a mix of fun and thought-provoking reactions. What I have found through Stigma Watch is that a lot of portrayals of mental illness either serve to glorify or demonise mental illness. There is no real in the middle. Unless of course, it is produced by people with the mental illnesses themselves.

As part of Stigma Watch this last weekend I watched Touched with Fire. The writer and director of the film was Paul Dalio, who lives with Bipolar. Whilst the film was by no means perfect, from the first minute I saw the character who was loosely based on Dalio himself, I felt an affinity with him. The first scene we meet this character, he is reciting poetry and then shown in his disarrayed apartment talking about his paranoid conspiracy theories. He is speaking fast. He is aggressive. Has delusions of grandeur. It was honestly confronting for me to see. It resonated with me that strongly.

Clearly there is a certain power that comes from people with lived experience telling their own stories or creating stories based on their experience. This isn’t limited to the mental illness community but extends to all marginalised groups. There’s a great phrase that echoes in the advocacy spaces and that is ‘nothing about us, without us.’ Even if it is not possible, for whatever reason, for projects to be lead by people with lived experience communities must be consulted.

And when I say consulted I don’t mean messaging someone on Instagram and asking for their advice. I mean actually engaging with co-design and paying people cash-money for their emotional labour.

One last thought on representation. Many people argue against marginalised people representing themselves based on the idea of a merits based system. For example, why get a trans actor to play a trans character when we have a perfectly talented cis actor readily available? But this logic is insulting because it implies that people within these communities lack the talent to get the roles on their own merit, and would only get it out of tokenism.

It is not a lack of talented and creative people within mentally ill communities and other communities causing them not to be selected as writers/directors/actors. It is a lack of supportive structures in place to allow marginalised groups to flourish and rise to the top in these spheres.

And this needs to change. Because accurate, thoughtful representation matters. It makes people like me feel seen. And it can educate others.

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