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.
With a limited on-screen presence, autistic characters have emerged in another medium: fan fiction
This article originally appeared on The Conversation on December 13, 2018.
In one Harry Potter fan fiction story, Hermione Granger anxiously awaits the results from a recent test.
It isn’t her performance on an exam in a potions course that she’s concerned about. Instead, the higher-ups at Hogwarts had ordered she undergo some psychological tests. They had noticed how quickly she talked, along with her nervous tics.
Hermione eventually sees the results: “I stared at my parents, blinking my eyes. I knew the results would be here today, but I didn’t think the outcome would be like this. Asperger, the paper said.”
In this piece of fan fiction, Hermione Granger has been diagnosed with autism spectrum disorder.
As scholars of fan fiction and young adult literature, we started noticing how some fan fiction authors were incorporating autism into their stories – sometimes through new characters and other times by rewriting existing ones.
Since then we’ve been collecting and analyzing fan fictions in which young writers have created characters with autism.
These amateur writers seem to be eager to create the kinds of characters they aren’t regularly seeing in the media. The Harry Potter universe, in particular, has emerged as a popular setting.
The importance of autistic characters
According to the Centers for Disease Control and Prevention, approximately 1 in 59 children is diagnosed with autism, a word that covers a spectrum of conditions that psychologists refer to as autism spectrum disorder.
How autism manifests can vary greatly from person to person. Some experience significant disability, while others experience milder forms of cognitive difference and social discomfort.
But one thing is clear: Diagnoses have increased in the past 20 years, with the National Autism Association identifying autism as the “fastest growing development disorder.”
At the same time – outside of a couple of notable examples, like Dustin Hoffman’s character in “Rain Man” and Julia from “Sesame Street” – there continues to be a dearth of autistic characters in books, television shows and films.
Yet these media portrayals are extremely important: Accurate portrayals of autism can help people understand the complexities of this condition. Nonexistent depictions – not to mention misleading ones – foster misinformation and bias.
In 2015, Sonya Freeman Loftis, an assistant professor of English at Morehouse College, published “Imagining Autism: Fiction and Stereotypes on the Spectrum,” one of the few academic studies to take up the representation of autism in fiction.
Loftis critiques stereotypical depictions of autism in a range of fictional narratives, such as the character of Lennie in Steinbeck’s “Of Mice and Men,” a figure whose disability is linked to sexual violence.
But she also points out that positive representations of autism spectrum disorder can actually highlight some of the strengths that those with autism possess: attention to detail, high levels of concentration, forthrightness, dedication and strong memory skills.
Activists and scholars like Loftis have argued that people diagnosed with autism spectrum disorder should be more justly and accurately understood as “neurodiverse”: If neurological faculties exist on a continuum, theirs could simply be thought of as “different” from the statistical norm.
Young writers take the lead
If major studios and publishing companies express little interest in telling stories about people with autism, who can fill the void?
Fan fictions and other forms of do-it-yourself media-making are an outlet for people to explore issues that are often missing from mass market and popular entertainment.
Some of the most famous examples from fan fiction take place in the Star Trek universe, particularly those that imagine a gay relationship between Captain Kirk and Mr. Spock. In doing so, fans were able to integrate queer plots and themes into Gene Roddenberry’s science fiction universe at a time when few gay relationships were appearing on TV.
Given the paucity of mass media representation of autism, we wondered if young people might be using fan fiction to explore this complex topic.
Beginning in 2016 – and working with University of California, Irvine graduate student Vicky Chen – we started analyzing the writings that have appeared on a hugely popular fan fiction clearinghouse.
After selecting for categories such as “neurodiverse” and “differabilities,” we noticed that a number of stories set in the Harry Potter universe seemed to have autistic or neurodiverse characters. We collected and coded these stories, and are set to publish our findings in a forthcoming essay in the Journal of Literacy Research.
Most of the stories were written by young people who have siblings, relatives or friends with autism spectrum disorder. We concluded that, while some of these characters occasionally slip into stereotypes, most of them affirm the ability of people with autism spectrum disorder to confront bigotry and speak about their own conditions.
By extension, the stories promote an understanding of autism as something that isn’t scary or horrific.
In one story, for instance, the writer creates a new character, Albus Potter, the son of Harry Potter, who is autistic and newly enrolled in Hogwarts. In the story, Albus initially has difficulty forming relationships. But he ultimately finds friends in houses as diverse as Gryffindor and Slytherin.
His overprotective mother tries to shield him from ridicule by students and even some biased faculty. But she’s challenged by others, including her husband, who suggests that “Albus can do a great many things that people have said he couldn’t.”
The ‘magic’ of autism
Why the Harry Potter universe?
We reasoned that many of these young writers are still in school and likely huge fans of Harry Potter, so the choice of Hogwarts as a common setting isn’t surprising.
But many of the young authors also linked autism to a kind of “magic” or ability that could be understood at Hogwarts as special – even advantageous – in ways that “muggles,” or normal people, wouldn’t see. In all of the stories we analyzed, everyone with autism also has magical abilities.
In other cases, autism isn’t depicted as an impairment or a challenge to overcome. Instead, it simply appears as a “difference” – a portrayal that’s aligned with the goals of those who argue that autism should be thought of as a form of neurodiversity, not as an illness or disability.
Perhaps most significantly, this research points to the ways in which young people can craft complex representations of autism that the media shies away from.
We can’t say when positive representations of autism will move from fandom to the mainstream.
But until then, these young writers are quietly doing the work to help dispel stereotypes and generate understanding – perhaps even appreciation.
Chancellor's Professor of English and Gender & Sexuality Studies, University of California, Irvine
Associate Professor of Informatics, University of California, Irvine
This article originally appeared on The Conversation.
How to Support Mental Health in People with Autism
A new study suggests that autistic individuals have higher levels of stress and depression when they don’t feel accepted.
This article originally appeared on Greater Good, the online magazine of the Greater Good Science Center at UC Berkeley.
Mental health among autistic individuals is an underdeveloped area of research—a situation that many autistic people are advocating to change. This is especially crucial since rates of depression and thoughts of suicide are higher among autistic people than in the general population.
But why would there be a stark difference in the mental health and well-being of autistic people compared to “neurotypical” people? A recent study, one of the few looking at this issue, set out to examine the importance of acceptance.
One hundred eleven autistic individuals in the U.K. filled out online surveys about their levels of acceptance—from themselves and society—and their depression, anxiety, and stress. Authentic autism acceptance would imply “an individual feeling accepted or appreciated as an autistic person, with autism positively recognized and accepted by others and the self as an integral part of that individual,” the study explained.
The results? As predicted, those who felt less accepted by others and by themselves showed higher levels of depression and stress.
When asked about societal acceptance, 43 percent of participants said they did not feel accepted by society in general, and 48 percent said they did not feel accepted sometimes.
In describing their experiences of not feeling accepted, respondents most often alluded to “misunderstandings and misconceptions about autism, experiences of masking/camouflaging,” and other issues, the study authors report. Masking and camouflaging refer to an autistic person making efforts to “pass” as neurotypical and the stress and exhaustion that result from that. It makes sense that feeling pressured to hide a part of yourself would result in higher stress and a tendency toward depression, given how critical social relationships and a sense of belonging are to well-being.
On the other hand, there was no significant link between autism acceptance and anxiety. The researchers postulate that anxiety can come from a host of sources for the autistic person; acceptance may not be as primary as, for example, the sensory sensitivities that can accompany autism.
So how can we support the mental health of autistic people?
According to the researchers, one factor that can contribute to acceptance is how we think about autism—in particular, whether we embrace the “neurodiversity” framework and a social model of disability, as opposed to a medical one. Neurodiversity is a way of conceptualizing mental differences as part of natural human diversity, as opposed to pathologizing some neurological makeups (such as autism) as abnormal. The social model of disability focuses on systemic factors within society that disadvantage particular people, whereas a medical model sees certain people as intrinsically, biologically disabled when they differ from a perceived norm.
The results of this study also indicate that we should pay greater attention to the stressful experience of “masking,” and ways that friends, colleagues, acquaintances, and family members can deepen their understanding of the autistic experience and help autistics feel seen for who they are.
A great place to start is to follow the #ActuallyAutistic hashtag on Twitter (an online social media movement whereby autistic voices are amplified with the slogan “nothing about us without us”), as well as the blog of autistic scholar and activist Nick Walker and my own The Neurodiversity Project. Learning about topics such as sensory sensitivities, heightened empathy (as opposed to lessened), and other unique autistic experiences can go a long way in understanding autistic people in our lives.
This particular study is noteworthy for surveying autistic individuals, as opposed to simply reporting professionals’ views of them. With greater self-acceptance and societal acceptance, autistic people may be able to foster a larger sense of belonging and agency, thereby reducing feelings of isolation, loneliness, and depression—all critical for mental health.
Author of the acclaimed book Divergent Mind
Creator of The Neurodiversity Project and The Interracial Project
This article originally appeared on Greater Good, the online magazine of the Greater Good Science Center at UC Berkeley.