The Case for Authentic Disability Representation in Media and Why Our Society Desperately Needs It
HIGHLIGHTS
• More than 95% of all characters with disabilities seen on television are played by non-disabled actors.
• Media can make a difference by helping to normalize disability and expose people, disabled and able bodies alike, to disabled characters they can admire and relate to.
• Hollywood is leaving approximately $125 billion annually on the table by not having authentic and accurate disability representation.
Our society is currently buzzing with diversity, equity and inclusion (DEI) movements. From the classroom to corporate board rooms, and all over social media, you can find people of all ages discussing things like how to be anti-racist or how to properly use gender pronouns. While these are all vastly important conversations to have, the largest marginalized group in the world is consistently left out of this conversation: the disabled population. All of these DEI efforts are vital as we strive to continue learning and growing to make our world a more loving place, but we will never succeed if we’re ignoring the world's largest marginalized community.
The media mirrors this societal oversight — disability representation lags far behind every other marginalized group. In the U.S. today, one in four people (26 percent) have a disability and yet only 3.1 percent of characters on-screen are disabled. In children’s television representation is even worse - less than one percent.
With over a quarter of our population identifying as disabled, recent market research found that Hollywood is leaving billions of dollars on the table. That is a striking number, but not what’s most concerning. Media tends to reflect our society’s values so more importantly, above everything -- the lack of visibility all around is killing disabled people. Let’s explore why.
As children, we observe the world around us in order to make meaning of our own lives, identities, and experiences. When we see people we can relate to and look up to, it helps us create a sense of self. However, when we don’t see anyone similar around us we can relate to, we turn to movies and television to fill that role. When we see positive portrayals of characters we connect with, it can positively impact our mental health. My younger brother, who has Cerebral Palsy, had virtually no positive portrayals in media. No characters that looked like, talked like, or processed the world like him. Not only did that impact my brother’s sense of self, I realized the lack of representation in media impacted the way non-disabled people interacted with my brother and those like him.
We often fear what we don’t understand, and some disabilities may look or sound startling if you’ve never seen it before. This is where media has an opportunity to be largely impactful by creating exposure and understanding through authentic representation. Media can make a difference by helping to normalize disability and expose people, disabled and able bodies alike, to disabled characters they can admire and relate to. I witnessed this lack of exposure first hand with my brother, and his physical differences due to his Cerebral Palsy. People stared, but it wasn’t their fault; they had never been exposed to people with bodies that were built and functioned atypically. My brother uses a walker as a mobility aid, but often still falls down due to weakness in his leg muscles. Sometimes he’d knock things over in public on his way down, which made my family a spectacle. When we were younger I tried to hide my embarrassment, pushing my emotions aside, pretending it was no big deal. But I desperately wished others could see my brother as I did: just a kid with some extra challenges.
This lack of exposure and understanding has been seen throughout history, perpetuating more misunderstanding and stigma around the disabled population. Historically, disabled people have been killed, sent away, hidden from the public, or socially pressured to hide their disabilities if possible. This is why it’s vital that we include characters with disabilities in media, especially children’s media -- so we can normalize all types of bodies and neurodiversity. Studies have shown that kids who are exposed to diverse types of people at a young age grow up to be less discriminatory and more accepting individuals. If kids and adults could get to know and interact with more disabled people, whether in real life or on screen, seeing my brother wouldn’t be such an event to stare at.
COVID-19 pandemic emphasized society’s “ableist” values
A larger reason we must strive for more disabled representation is because authentic representation can actually shift societal cultural values. Our society needs to start valuing the lives of disabled people. In the beginnings of the COVID-19 pandemic, many disabled people in group homes were essentially triaged as less important lives to save and they and their staff didn’t receive access to essential COVID-19 precautions and resources. This resulted in an astounding death toll for this group. In New York, one study found people with intellectual and developmental disabilities, who were living in group homes with roommates and care staff, were dying at nearly 8 times the rate. In England, one article reported 60 percent of the deaths from COVID-19 in 2020 were disabled individuals and many of these deaths were preventable. Yet, mainstream media has not been covering this. The lack of news coverage is telling, and reflects our society’s ableism at its finest - the idea that non-disabled lives are more important than disabled ones.
Unfortunately, this is just one blaring example of ableism that directly resulted in a devastating number of disabled deaths. People with intellectual and developmental disabilities overall tend to have a higher mortality rate. In some cases there may be other health factors related to their condition that makes their lifespan shorter. However, in many cases it’s a lack of access to and receiving proper and effective healthcare that is the true barrier. Disabled people are dying unnecessarily, period. This can only change when our society as a whole starts valuing disabled lives - but first they must see ableism as a problem. One way we fight ableism? All together now! More accurate and authentic portrayals in the media.
Disability as a prop or “inspiration porn” in media
In 2020, CSS released a report on the importance of authentically inclusive representation in regards to diverse identities, with a special focus on race. One way to ensure authentic representation is by breaking harmful group stereotypes - for example in the case of race, not only showing Asians as quiet and nerdy, or Black women as sexualized and dominant. In the same way we must also be mindful with our portrayals of disability and what it means to be authentic. Oftentimes if disabled people are visible on screen at all, they are depicted as unintelligent (or off-puttingly intelligent), as a burden, or simply a prop to progress the story along. The character is reduced to one aspect of their identity, their disability. Often a main, non-disabled character is motivated by or learns a lesson thanks to this disabled side character. When portrayals are limited to this and people are diminished to just their disability, we as a society expect them to be merely a side character in our world which leads to more discrimination and exclusion.
While often well-intended, there is another problematic trope of these generic and cliché portrayals of disabled people. The main character, typically an able-bodied person, often helps or “saves” a disabled person, or even uses the struggles and triumphs of a disabled character to inspire others. This surface-level touching story is commonly referred to as “inspiration porn.” This can be tricky because good intent unfortunately reduces the disabled character to being objectified only to inspire others, rather than celebrating and spotlighting the disabled person as just a person. This instead promotes the message that disabled people should be pitied or need help rather than celebrating them for the intricate humans they are and what they have to give to the world.
In this way, the media we consume has the power to create negative biases towards disabled individuals unintentionally. However, we also know that when thoughtfully portrayed, narrative stories have the power to dismantle biases and shift our culture to be a more inclusive society. Researchers studied this phenomenon by comparing internalized racial bias to LGBTQ+ biases during the Obama years. You might think having a Black president would shift our internalized racism, however the levels of bias didn’t change over the eight years. Yet, during those same years, LGBTQ+ biases dropped significantly which researchers attribute to popular media and television shows that were LGBTQ+ inclusive, like Glee. So how can we do this with disability?
Getting it right: include disabled individuals
There’s a common saying amongst the disabled community: nothing about us without us. In the context of storytelling, this speaks directly to the idea that if the story features a disabled character, there should be people involved both behind and in front of the camera who can directly relate to the character. We have a lot of room for growth, as more than 95 percent of all characters with disabilities seen on television are played by non-disabled actors. However, there are a few recent shows that have made waves in authentic disability representation. Shows like Speechless, Special, and Everything’s Going to be Okay intentionally and authentically portray disability by actually hiring creators and actors who are disabled. The lead characters in Speechless and Special have Cerebral Palsy, as do the actors who portrayed them. In Everything’s Going to be Okay, one of the lead characters is Autistic and the actress who plays her has Autism Spectrum Disorder. These shows also had creators behind the camera who had direct experiences with the disabilities portrayed in the show and the combination of having actors and creators with lived experiences made these shows stand out and recognized for their work.
But let’s talk business.
So why should a behemoth industry like Hollywood care? For one, research shows that disability-inclusive workplaces significantly increase revenue, profit margins, and employee productivity. Inclusive or universal design, is the concept that when things are designed for people with permanent disabilities, everyone in society benefits. It’s sometimes referred to as the “curb-cut effect” as a curb-cut was designed for wheel-chair users, but people pushing strollers, or people riding bikes, or a film crew unloading equipment, also benefit. At the end of the day, Hollywood is a business, so to speak to that angle - in 2019 the Ruderman Family Foundation found that Hollywood is leaving approximately $125 billion dollars annually on the table by not having authentic and accurate disability representation. Talk about missed opportunities!
Imagining an inclusive world
All in all, it’s time we start recognizing and celebrating people with disabilities as a valuable part of our society because disability impacts ALL of us. Disability is the only minority group anyone can join at any time. Take a moment to let that sink in. Disability is the only minority group anyone can join at any time. In the UK they found that eighty percent of the disabled population were not born with a disability. That means that experiencing disability personally or through a loved one very likely will be a part of your life if it isn’t already. This is a universal experience that pervades race, sexuality, and socioeconomic status, so it’s time we start talking about it and representing it as so. Let’s use the power of media and storytelling to foster connection and belonging, to uplift others, and truly create a more inclusive world. Hire disabled people and let them tell their stories. My dream is to see a world where diversity is truly celebrated and embraced, and this includes disability. As we all know “with great power comes great responsibility,” so Hollywood - it’s time to walk the walk and step up to the responsibility of the power you have, to truly make our world a better place. I want to look around and see films and series’ that show people like my brother having a life filled with purpose, connection, mishaps, friendships and love. Because even though the challenges may look different on the outside, we can all relate to the pains and joys of what it means to be human.