Why we talk about disabled and neurodivergent representation - A white banner with a thick pink and blue watercolour top and bottom border. In the centre, black text reads 'why we talk about disabled and neurodivergent representation'. In the bottom right corner of the border is the repDISND logo.

repDISND is a collaborative event for members of the disabled and neurodivergent community to talk about disabled and neurodivergent representation. But why do we talk about disabled and neurodivergent representation? What’s so important about it that we’ve chosen to dedicate a whole month to this topic?

On this page, I’m going to answer those questions, starting by telling you a bit about myself because my story is what prompted me to create this whole event several years ago.

Heather’s Story

While writing the information for this page, I tried to work out how to communicate the importance of disability representation. I realised that my own disability story did just that. Born with a genetic condition that affects the formation of collagen in my body (hypermobile Ehlers-Danlos Syndrome) I was born disabled, however, I didn’t recognise myself as disabled until my mid-twenties.

One of the reasons I failed to know my identity as a disabled person was that there was no representation of people like me. While there were the stereotypical teenage loners who were bullied for being smart, weird or geeky, none of them had anxiety or depression. There were no children who hid ankle supports under their tights for years because their ankles were so weak they tore ligaments by just stepping off a bus.

It wasn’t just people like me, people with invisible disabilities, that were underrepresented – even disabilities that you could see were underrepresented or not represented.

That was 15 to 20 years ago, and hardly anything has changed.

Why Disabled and Neurodivergent Representation Is Important

There is still a distinct lack of disabled and neurodivergent representation, and when the disabled and neurodivergent community is represented it is through such a narrow viewpoint that only a fraction of the community is represented. And often when representation is present, it is usually done so incorrectly. In entertainment, only 5% of disabled characters are played by disabled actors (Source). Such a low percentage is not due to a lack of disabled actors, it’s because no effort is given to even find disabled and neurodivergent actors.

As Frances Ryan points out, society no longer accepts “blacking up” so why is “cripping up” acceptable?

Not using disabled actors also allows the audience to buy into the illusion that disabilities aren’t real, Christopher Shinn remarks in his excellent essay for The Atlantic. Shinn explains that while non-disabled actors can research a role, they are unable to draw on real experience. As a result, the audience is “able to ‘enjoy’ them without really confronting disability’s deepest implications for human life”.

In other words, the audience wants the fantasy of disability, not the reality. When they finish the episode of a TV show or a film, they don’t connect the disabled character with reality, with real disabled people. Whereas, if the character was played by a real disabled person, they would not be able to dismiss the storyline so easily because it is rooted in reality.

In 2007 Santina Muha, a disabled actor and writer, appeared on Who Wants to Be a Millionaire? in her wheelchair, the first contestant to do so (Source). After her episodes aired, she received fan mail and messages from across the world from disabled people, including a 6-year-old boy whose mother told her he was inspired by seeing someone else in a wheelchair.

“I was on TV for, like, 10 minutes, and I got fan mail from other countries,” Muha said. “Disability needs to be normalized.”

It really should be, and sixteen years later it still isn’t.

Why we talk about disabled and neurodivergent representation - The new accessible ramp in the T.A.R.D.I.S in Doctor Who.
The new accessibility ramp in the T.A.R.D.I.S in Doctor Who is an example of positive disabled and neurodivergent representation. Image Credit: Doctor Who Tragical History Tour. Copyright BBC One.

What effect can representation have?

Facts and quotes from articles are all well and good, but they can only tell you so much. That is why repDISND has been about our community, talking about our experiences and about what representation means to us.

Interviews are a great way to communicate this and in 2021 during the first event, I and other members of the disabled and neurodivergent community talked at length about why disabled and neurodivergent representation is important. I wanted to share with you what they had to say about representation, why they believe accurate representation is important, and what effect positive and negative representations have had on their lives.

Disability representation has the space to have a voice to be heard, be seen, be validated, be believed, and be understood by all walks of life. It allows a conversation with the term disability, where everybody can be included in learning more about what it is like to live with a disability.
Growing up, people used to ask what I wanted to be when I grew up and of course it was difficult to reply as I didn’t know what options were available to me. There weren’t people like me on tv who could be role models, and even discussions about disability were few and far between. I knew writing was an option, but it took me until my 20’s to realise that a career in tv and film was a possibility.
Most people have very little knowledge about disability. Therefore, what they see on television, or in film, or in a novel, quickly becomes their only sense of what it means to have that disability. The current portrayal of eating disorders reinforces the idea that all sufferers are underweight which is untrue and unhelpful. Although I was underweight at points of my eating disorder, most of the time I was not, and when I eventually sought treatment with eating disorder services, I was not underweight. Due to the stereotypes, I found it even harder to tell people that I was struggling and receiving help, as I didn’t fit their expectations of an eating disorder patient. Many eating disorder representations still pander to the incorrect idea that it is solely about body-image, or is a form of self-centredness, or attention-seeking, or vanity. As a result, people make derogatory comments like ‘just eat’, and some anorexics have been verbally abused in public or on the internet.
I think a lot of my self-doubt comes from inaccurate representation in pop culture. I have OCD, but I’m not super clean or afraid of germs. I am autistic, but I am not a boy, I am able to talk about various things…I am, essentially, not one-dimensional. I also can walk and stand, so, when all the wheelchair representation in shows or movies is about people who have no lower-body mobility, it’s very easy to feel like a faker.
If representation about our own community is not for us…if all disabled children are getting in the media are stereotypical portrayals of themselves, they’ll grab onto that.  They’ll think: “This is accurate.  This is who I am and what I exist for.  I exist as a prop in a nondisabled story.  I exist in the world to make nonidsabled people feel better about themselves.”
I know, because this is how I felt as a child.  And it took years, and connecting to my community myself before I realized I didn’t have to conform to the stereotype.  I could write my stories from a disabled character’s point of view and share what it’s really like.
Disabled representation is for us.  And it is so important that disabled kids know that they exist to be exactly who they are.
I often say disability representation in the media (like it or not) teaches nondisabled people how to treat us.  But it also teaches disabled people, kids especially, how to view themselves.
I strongly believe it’s responsible for how horribly I’ve been treated since becoming disabled. I’ve been noticing how disability always seems to be paired with the villain and then the heroes are excused for using the disability as an Achilles heel. Or the hero has a disability that’s taken away or used as punishment. Now that I’m aware of this, I can better understand why people react to disability the way they do. I think this runs deeper than we realize and fixing it will ripple into other areas, helping bring about other changes that are desperately needed. Just because it’s fictional entertainment doesn’t mean we should underestimate the effect it has on how we view and treat people.
I can’t think of specific examples, but I know I’ve come across fictional characters with depression who are considered “lazy,” “emotional,” or “tiring” by the other characters. It would be one thing if it was for the purpose of those characters then learning from it, but they don’t. The writers just leave it at that, only perpetuating the stigma and causing harm to people like me who already have to fight these kinds of lies in their minds.

If you would like to learn more, you can head over to the repDISND content hub and read through more interviews and articles.

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