The Upside’s Downside: Why Good Representation and Diversity Really Matter

Diversity. It’s the inescapable buzzword of the moment. New releases are scrutinised for their representation value, with a fervour and ferocity that leave some feeling they’re on the wrong side of a witch-hunt.

‘It’s not possible to represent absolutely everyone,’ some will say. ‘It’s just not realistic. People are so easily offended these days.’

Also, it seems that even when the misrepresented are represented, there is still fault to be found.

The Upside came to cinemas recently, with a not very positive response from the disabled community. It’s not just the tired cliché plot of the grumpy person with an impairment and the rough-around-the-edges free spirit who helps them “find a new lease on life”. One of the protagonists, a rich paraplegic, is played by Bryan Cranston of Breaking Bad fame. While Cranston is a very talented actor, he is not disabled.

Breaking Bad itself was praised for hiring disabled actor RJ Mitte in the role of Walter White’s son, a move that helped smash the misconception that those with disabilities were unable to portray themselves. In the UK it is estimated that a fifth of adults have some form of disability. In the US this figure is around a quarter. Yet, “disability stories” are hardly told, and when they are it is usually as the uplifting, feel-good, inspiring, tragic love story kind, and it is almost always starring able-bodied actors.

It can be argued that it is “just acting”, and although Mitte himself has said that using a high-profile actor like Cranston in the role allows disability stories to gain more attention, it still doesn’t remove the sting of mimicry. Check out the replies to his tweet for a little insight into both sides of this complicated debate.

It is of course an actor’s role to pretend to be something they’re not, but disabled people can act, direct, produce, write, and would they not add a greater level of understanding to this kind of story? Not least because when representation is done badly, there can be deep consequences.

Around this time last year, I began to have some health issues. I was finally diagnosed with fibromyalgia, a chronic condition that causes pain and fatigue. Its effect on my joints has left me with mobility issues, meaning I use a crutch and sometimes a wheelchair to get around.

To start with I was not keen on using mobility aids. I thought they were signs of weakness and giving in to my condition. I thought that I wasn’t “allowed” to use a wheelchair because I wasn’t disabled enough. In fact, I was very unwilling to put myself under the “disabled” label. I was sure someone would call me out and tell me I was faking my symptoms, or only using mobility aids for attention.

(Yeah, because the kind of attention you get using a crutch is really the kind of attention everyone wants. I am constantly asked weird questions on buses, like ‘Are you a snowflake?’, ‘Are they going to replace your joints?’ and my personal favourite ‘You might not get better? But you’re so young!’.)

I was worried about the reaction I might get in needing to switch from wheelchair to crutch depending on the activity. After all, that wasn’t the normal use of a wheelchair right? I’d seen the abuse that people with invisible or changeable disabilities had endured from using disabled parking spaces.

Then I discovered disabled activist Annie Segarra and the hashtag #AmbulatoryWheelchairUsersExist through a video on Facebook. This campaign sought to show people that some wheelchair users could also walk, and that disability was a fluid thing instead of an on/off switch. To see people like me gave me such a sense of validity, and helped me see my crutch and wheelchair not as restrictions but as my passage to freedom.

Segarra’s YouTube videos also gave a very powerful reason why there is such a negative reaction to people who can walk using wheelchairs and standing up from them. Almost every instance of wheelchair use on-screen is because of paralysis – the person in the chair physically cannot walk or move their legs. The action of standing up from a chair is played as a shocking reveal of deception and of faking illness. There’s an all-or-nothing mentality, and this misrepresentation has leaked into public thinking. Because of what we’ve been shown we now know that people in wheelchairs are not supposed to be able to walk. And that’s not the truth.

People are wrongfully subjected to abuse because the narrative is wrong. People are misunderstood, overlooked and silenced. Representation is important not only for the people whose stories are told, but also for those who have not seen another point of view other than their own.

When disabled characters, minority characters, gay characters – even female characters in some genres – are included, they often fall automatically into the ‘token’ trope. This is part of the problem; they stand out because they were not there before. They stand out when they are included because that was unusual, and it’s hard now to rectify the representation balance without the over-represented parties feeling like diversity is being pushed down their throats

Diversity issues cause such division because of how closely they hit to people’s realities. If your story is never told, if you never see a face or a body like yours on screen or waiting between the pages of a book, what impact could that have on your self-belief? If a girl only reads about male protagonists saving the day, what will that tell her about the role of women? If a minority child only sees themselves in background characters and side roles, what will that tell them about their place in the world? If a teenager questioning their gender identity or sexuality can only find clichés and stereotypes in the media they consume, will that help or hinder them in their search for answers?

When diversity is done right it can be life-changing.

As a writer working on a novel for children, I am hyper-aware of how important my representation decisions could be. In some ways it’s terrifying – readers are good at spotting a lack of research, or a regurgitated and problematic trope. In other ways, it’s inspiring. We have good reasons to listen well and tell diverse stories.

A friend of mine got given press tickets to see Aladdin, the musical in London. Before the show, we watched a series of behind-the-scenes videos that had been produced for schools. In one of these videos a group of children were asked what they liked best about Aladdin. One young girl said simply, ‘I like Princess Jasmine because she looks like me.’ It’s probable she isn’t able to say that about many heroes.

Another friend of mine has been questioning their sexuality for a number of years. Then they read a book whose main character was facing that same inner battle. ‘I’ve never seen my own thoughts written like that before,’ they said.

They felt represented, understood, seen.

Diversity matters because every child, teen and adult deserves that moment of ‘they’re like me’. Storytelling is an ancient and powerful art form; people listen to it, take from it, learn from it. It’s the duty of every storyteller to tell the absolute truth.

In practice, diversity is really not that difficult to achieve. When I was younger, I devoured a series of books called The Roman Mysteries. I loved the historical setting, the interwoven mythology, how immersed I felt in the detailed world, and the unravelling of the mysteries.

And the four main characters; Flavia, the highborn Roman; Nubia, the African ex-slave girl; Jonathan, the Jewish Christian; and Lupus, the mute beggar – I loved them all dearly. As a child, I never noticed or cared about how diverse they were. I was too busy learning from their unique world views. I do not have the exact same background as any of them. Yet I never felt as if I could not relate to them – they all cared and cried and laughed and loved.

Now think how much more powerful these characters would appear to children who have never seen their own faces looking back at them from a story. A disabled child, a black child, a Jewish child, a child who was forced to leave their birth country or their family, a child who has lost a parent.

We owe everyone – especially children – not only good stories, but diverse stories because they teach compassion and acceptance. They show difference as something beautiful, not something to be feared. They recognise different identities as valid and important.

It’s one thing to tell a child they can do anything, no matter who they are or what they are. If this is never shown to them, how can we expect them to believe this message and take this message and be extraordinary?

Diversity is simply telling the truth about our vivid, complicated, messy, weird world. We’re all different, so the stories we hear should be too.