From Stigma to Understanding: Why Representation of Illness in Popular Culture Matters

In diversity there is beauty and there is strength.

Maya Angelou

I never saw myself reflected on tv or in books. A chubby small town girl who liked to read didn’t get much screen time on tv or page time in books.

She still doesn’t.

Not to mention one with chronic illness.

As more minorities speak up and rightfully demand their stories be told, I speak out for myself and other people with chronic illness.

Stay-At-Home Characters

We see more and more people with disabilities on TV. It is so great to see. Especially the Brits are excellent at introducing characters for whom their disability is not a story thread in itself, and when it is, it is treated in the proper manner regarding the actual lived experience of that disability.

However, often people with these disabilities are able to go outside with help of mobility aids. They are able to take up space within the confines of the story setting.

Such is often not the case when it comes to chronic illness. Chronic illness, as the term coins, is chronic. There are no treatments or cures.

People with chronic illness live with pain and fatigue, and other assorted symptoms every second of every day. They cannot move in the spaces TV often occupies.

As a writer, I realise it might be difficult from the onset to tell a compelling story of characters who spend much of their time in their homes. But that is no excuse. Their – our – stories must still be told.

Because we deserve to be seen and others deserve to see us.

Because being seen helps validate our existence.

Since others seeing people like us helps their understanding of us.

Because our story being told can help form policies.

Because our stories being told can help another going through same type of story feel less alone.

As we are still human beings with incredibly rich stories to tell.

Even if those of us with severe illness spend our time at home, our stories are important.

Our inner world is rich because of everything we go through. Our relationships with those around us get greatly affected, and the social life of a sick person is reduced significantly.

All these elements make for great storytelling.

It also makes for creating empathy in those who have never considered a life like that or who have disabled people in their life and don’t truly understand what their daily life is really like.

The Power of Being Seen

Not every tale told needs to involve great action. Not every story needs physical agency. Not each story needs a protagonist who travels the globe for new insights.

Those of us who are sick know exactly the type of insights about humanity we gain through our lives at home. And they are worthy of being told and worthy of being heard.

Of course, not every person with a chronic illness wants to be subject of a project around what they cannot do anymore. They rather focus on the joy they still feel in their life. Or other stories themselves are their escape.

However, do not underestimate the power of being seen.

Popular culture plays an enormous part in our lives, and even in our upbringing. Think of the kids who watched CODA and saw themselves featured on the big screen. Black kids who watched Chadwick Boseman be a superhero. The surge of belief in themselves that a story can provide is immeasurable, and so is the power popular culture holds.

Those of us with chronic illness, who already live an extra hard life, deserve this feeling as well.

They deserve to feel that people care about their stories, that they care about them.

Creating Empathy

Telling stories from all kinds of perspectives and about all kinds of people with all kinds of backgrounds enriches the human experience, not just for people part of those groups, but also – or even more so – for those who have no experience with such an existence.

Empathy and compassion are what make us human. To reach empathy and to be compassionate means to understand that other people live under different circumstances than you.

Having their stories told helps with that.

Encountering people with illness in popular culture makes people not stare at you walking differently to them or holding a cup of water to your mouth differently.

It will help people not judge you when you have to take the one empty seat on a train because you cannot stand for long despite being young and healthy-looking.

It will help politicians understand that even though you are ill you want to be part of society just as much as anybody else.

Our Lived Experience

It is vital to have those stories told – and written – by the people who live the experience.

As long as there is no level playing field in the arts, this needs to be the way to do achieve it.

Plus, those living it bring insight into the story abled people could never bring to the table.

And so I will continue to push for the stories of those disabled and ill to be told.

I push for people with illness and disability to play their part in telling those stories.

So that hopefully one day we can look back and realise that we no longer tell the story of illness, but the story of human beings, who are also ill.

Until that day comes I will continue to fight for the position of people with chronic illness and disability, and other minorities, in life itself, but also in art and in popular culture.

Are you disabled? How do you feel about this topic? Leave your thoughts in the comment section below.

Sandra Postma

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