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.
How to Diversify Autism Representation in the Media and Why Intersectionality Matters
HIGHLIGHTS
• Autism is a complex spectrum that includes a variety of symptoms, and no two autistic individuals exhibit the same ones.
• White children are 110% more likely to be identified with autism than Black children and 120% more likely than Hispanic children.
• Transgender and gender-diverse individuals experience higher rates of autism in comparison to their cisgender counterparts.
Growing up as an autistic individual has been difficult for many reasons, most of which stem from my interactions with other people. One memorable instance occurred during a speech therapy session I had in middle school. Although I was diagnosed with autism spectrum disorder (ASD) at the age of 2 and had numerous records indicating so, my then-speech therapist insisted that there was no way I could be autistic. Why? Because I did well in school. This was not an isolated incident though: to this day, I find that many people, including professionals, are surprisingly ignorant about autistic people who deviate from the typical white male savant. I, for instance, am a woman who isn’t a savant and was able to make friends and find love.
Unfortunately, autistic people like me are not represented often in the media, where many people develop their understanding of the autistic experience. While most autistic characters are portrayed as white male geniuses (like Rain Man and The Good Doctor), the fact is, autism is exponentially more complex and diverse than what we see on-screen.
In fact, a study done in 2018 on media portrayals of ASD found that around 46% of the autistic characters on-screen had savant abilities, yet only 10% of autistic people possess these skills in real life. In reality, autism is a complex spectrum that includes a variety of symptoms, and no two autistic individuals exhibit the same ones. Further, the autistic narrative excludes many important aspects of life, such as experiences with dating and romance. Perhaps most disappointing, though, is the sheer lack of intersectionality with media representations of ASD, especially with regard to gender and race.
Connections with Gender and Sexuality
Autism affects individuals of all genders and sexualities, yet most media portrayals reinforce the aforementioned stereotypes. In an article highlighting the experiences women have with ASD, it was noted that women are expected to act “normal” while living with ASD. For instance, young women are expected to complete their studies, behave like their neurotypical peers, and pick up social cues all without supplemental aid. This can lead them to camouflage behaviors (i.e., mimic neurotypical individuals to act “normal”), ultimately delaying the proper diagnosis and treatment they need. While their male counterparts quickly receive assistance and ASD identification, women feel out of place due to society providing cis men a space to “act out”, allowing neurodirvergence to be seen rather than ignored. Furthermore, one 2020 study found that transgender and gender-diverse individuals experience higher rates of autism in comparison to their cisgender counterparts. Although there are many women and LGBTQ+ individuals on the autistic spectrum, in the rare instances where autistic relationships appear on-screen, they are almost always shown from the male, heterosexual perspective.
Fortunately, there have been recent increases in shows and movies about autism’s intersection with gender and sexuality. Atypical explores an autistic boy’s difficulties with dating and coming of age, and Love on the Spectrum includes queer representation. Everything’s Gonna Be Okay includes one female character navigating her experiences with ASD and the dating world, a role played by an actor who actually has ASD, Kayla Cromer. However, these few stories cannot capture everyone’s experiences with ASD. While Atypical discusses how to navigate romance, it once again follows the narrative of a white, cisgender, male character. Similarly, Love on the Spectrum and Everything’s Gonna Be Okay mainly consisted of a white, cisgender cast. So, while the media continues to include more women and LGBTQ+ people with autism, there must also be a push for more nuanced representations with race.
Connections with Race
According to a 2018 community report on autism, white children are 110% more likely to be identified with autism than Black children and 120% more likely than Hispanic children. Many factors influence this occurrence, such as socioeconomic status and even cultural differences. To protect against discrimination, for example, African American families often emphasize independence and self-reliance in their children; if misinterpreted by family or health care providers, these characteristics could lead to a delayed diagnosis of autism. Furthermore, these diagnostic delays can often stem from healthcare provider bias, which could then lead to doctors misinterpreting symptoms and misdiagnosing patients from underrepresented groups. And due to stigma surrounding disability in some ethnic communities, some families may struggle to reach any diagnosis or may not even accept the presence of autism. As a result, many autistic children of color do not receive the proper treatment and support they need compared to white autistic children. Further, low-income communities of color tend to watch the most TV in the US, making it more likely that these individuals will encounter the redundant portrayal of white autistic characters.
Stories featuring autistic people of color may decrease late diagnosis in these communities by reducing stigma and depicting what autism truly looks like. One great example is Pixar’s short film “Loop,” whose main character is a nonverbal, autistic girl of color. The short has been praised by the ASD community and provides a great foundation for future representations of autistic people of color. Diversifying autism in the media can help eliminate misconceptions that prevent people of color from receiving the proper identification they need.
Conclusion
Increasing autism representation in the media would be invaluable for autistic viewers, especially autistic youth. As you may expect, autistic youth tend to experience more bullying than their neurotypical peers and may face additional bullying for other aspects of their identity such as race and sexuality. It doesn’t help that the media illustrates autistic characters as unappealing or unwanted. By including a wide array of autism representation in the media, autistic youth of all ages, races, genders, and sexualities may feel better represented and understood.
Actionable Insights
Show the diversity within the autistic community by including characters of varying race, gender, socioeconomic status, and sexuality.
Directly involve more autistic people in content creation: cast more individuals on the spectrum, recruit more autistic people behind the scenes, and consult the autistic community often.
Highlight varying issues that different populations have while growing up and living with ASD, like an autistic woman’s struggle with diagnosis or person of color’s experience with cultural stigma around disability.
This article is written from the perspective of:
B.A. Psychology, Research Assistant at Developmental Transitions Laboratory
Co-authors:
CSS Intern
CSS Intern
B.A. Psychology, Research Assistant at Developmental Transitions Laboratory
B.A. Psychology, Research Assistant at Developmental Transitions Laboratory
B.A. Psychology, Research Assistant at Developmental Transitions Laboratory
On screen and on stage, disability continues to be depicted in outdated, cliched ways
This article originally appeared on The Conversation on November 2, 2020.
The #MeToo and Black Lives Matter movements have forced Hollywood and other artists and filmmakers to rethink their subject matter and casting practices. However, despite an increased sensitivity to gender and race representation in popular culture, disabled Americans are still awaiting their national (and international) movement.
“Disability drag” – casting able-bodied actors in the roles of characters with disabilities – has been hard to dislodge from its Oscar-worthy appeal. Since 1947, out of 59 nominations for disabled characters, 27 won an Academy Award – about a 50% win rate.
There’s Eddie Redmayne’s performance as Stephen Hawking in “The Theory of Everything”; Daniel Day-Lewis’ portrayal of Christy Brown, who has cerebral palsy, in “My Left Foot”; and Dustin Hoffman’s role as an autistic genius in “Rain Man” – to mention just a few.
In recent years, however, we’ve seen a slight shift. Actors with disabilities are actually being cast as characters who have disabilities. In 2017, theater director Sam Gold cast actress Madison Ferris – who uses a wheelchair in real life – as Laura in his Broadway revival of Tennessee Williams’ “The Glass Menagerie.” On TV and in movies, disabled actors are also being cast in roles of disabled characters.
Despite these developments, the issue of representation – what kind of characters these actors play – remains mostly unaddressed. The vast majority of characters with disabilities, whether they’re played by actors with disabilities or not, continue to represent the same outdated tropes.
As a professor of theater and media who has written extensively on the elements of stage drama, I wonder: Are writers and directors finally poised to move beyond these narrative tropes?
Breaking down the tropes
Typically, the disabled characters are limited to four types: the “magical cripple,” the “evil cripple,” the “inspirational cripple” and the “redemptive cripple.”
Magical cripples transcend the limitations of the human body and are almost divinelike. They make magical things happen for able-bodied characters.
In many ways, the magical cripple functions like “the magical Negro,” a term popularized by director Spike Lee to describe Black characters who are usually impoverished but brimming with folk wisdom, which they selflessly bestow on existentially confused white characters.
Like the magical Negro, the magical cripple is a plot device used to guide the lead character toward moral, intellectual or emotional enlightenment. The magical cripple doesn’t learn anything and doesn’t grow because he already is enlightened.
In film, examples include Frank Slade, the blind army colonel who guides young Charlie through the perils of teenage love in 1992’s “Scent of a Woman.” Marvel’s Daredevil character is a perfect example of a magical cripple: A blind person imbued with supernatural abilities who can function above and beyond his physical limitations.
Evil cripples represent a form of karmic punishment for the character’s wickedness. One of the most well-known is Shakespeare’s Richard III, the scheming hunchbacked king.
In a 1916 essay, Sigmund Freud pointed to Richard as an example of the correlation between physical disabilities and “deformities of character.” The trope of the evil cripple is rooted in mythologies populated by half-man half-beasts who possess pathological and sadistic cravings.
More recent examples of the evil cripple include Dr. Strangelove, Mini-Me from “Austin Powers: The Spy Who Shagged Me” and Bolivar Trask in “X-Men: Days of Future Past.”
Then there are inspirational cripples, whose roles equate to what disability rights activist Stella Young calls “inspiration porn.” These stories center on disabled people accomplishing basic tasks or “overcoming” their disability. We see this in “Stronger,” which retells the story of Boston Marathon bombing survivor Jeff Bauman.
In the inspirational narratives, disability is not a fact of life – a difference – but something one has to overcome to gain rightful sense of belonging in society.
An offshoot of the inspirational narrative is the redemptive narrative, in which a disabled person either commits suicide or is killed. In movies like “Water for Elephants,” “Simon Birch” and “The Year of Living Dangerously,” disabled characters are sacrificed to prove their worth or to help the protagonist reach his goal.
These characters serve as dramaturgical steppingstones. They are never partners or people in their own right, with their own drives and ambitions. They are not shown as deserving their own stories.
The persistence of these tropes underlies the urgent need to reevaluate the makeup of writers and production teams. Who writes these parts is perhaps more important than who acts them.
Beyond the hero’s journey
There’s a reason these formulaic roles are so prevalent.
For much of the past century, Hollywood storytelling has operated according to the hero’s journey, a dramatic structure that places the white male able-bodied character at the center of the story with atypical characters serving as “helpers” to support his goals.
This narrative model has conditioned audiences to see the helpers as purely functional. The tropes based on this framework define the categories of belonging: who is and who isn’t human, whose life is worth living and whose isn’t.
The one narrative journey that historically allowed the disabled to play a central role depicted them as working toward the symbolic reclamation of their dignity and humanity. In tragic narratives, this quest fails, and the characters either die or request euthanasia as a gesture of love toward their caretakers.
“Million Dollar Baby” and “Me Before You” are two good examples of films in which disabled characters choose voluntary euthanasia, communicating the socially internalized low value of their own lives.
But what if disabled characters already had dignity? What if no such quest were needed? What if their disability weren’t the thing to overcome but merely one element of one’s identity?
This would require deconstructing the conceptual pyramid of past hierarchies, one that has long used disabled characters as props to illuminate conventional heroes.
Carrie Mathison in the series “Homeland” can be thought of as representing this new approach. Carrie, played by Claire Danes, struggles with mental illness, and it affects her life and her work.
But it is not something to overcome in a dramatic sense. Overcoming the disability is not the central theme of the series – it’s not the main obstacle to her goal. Carrie’s disability does give her some insights, but these come at a price and are not magical.
“Homeland” further breaks the mold by giving Carrie a helper who is an older white male – Saul Berenson, played by Mandy Patinkin.
As we move towards greater gender and race inclusivity at work and in the arts, disability should not be left behind. More complex, more sophisticated stories and representations need to replace the simplistic, outdated and cliched tropes that have been consistently rewarded at the Oscars.
Associate Professor of Theatre and Dramaturgy, Emerson College
This article originally appeared on The Conversation.
5 ways to challenge systemic ableism during Autism Acceptance Month
This article originally appeared on The Conversation on April 21, 2021.
April is World Autism Month. It kicked off on April 2 — World Autism Awareness Day — launching a month of activities and events across the world including the Autism Speaks’ Light It Up Blue campaign. Each year, key landmarks across Canada and the globe, including Toronto’s CN Tower, Ottawa’s Peace Tower and Vancouver’s B.C. Place light up blue to promote public awareness and understanding.
What could possibly be wrong with a campaign to sensitize the public to autism?
World Autism Month and Light it up Blue have been the subject of protest from autistic self-advocates and organizations such as Ontario’s Autistics for Autistics and the national group, Autistics United Canada.
Self-advocates point to the absence of autistic leadership in awareness campaigns and describe how the powerful advocacy organizations that fund them — led primarily by non-autistic people — continue to portray autistic people negatively as mysterious puzzles to be solved. They continue to focus on cures for autism or therapies that aim to “fix” autistic people.
At first blush, it might seem that autism organizations are finally heeding the concerns of autistic self-advocates. Words such as “inclusion,” “diversity,” “acceptance” and “understanding” pepper their campaigns. Yet these organizations persist in advancing the rhetoric of autism as a burden and disorder and often exclude autistic people from leadership.
As allies, parents and critical autism researchers, we understand the dire need for awareness, advocacy and research. Findings from our Re•Storying Autism project show autistic children and adults experience higher rates of bullying, mental health struggles, misunderstanding, inferior education, underemployment and even premature death.
Families struggle with the stigmatizing effects of misunderstanding and the lack of meaningful or culturally relevant help. This is especially true for racialized autistic people and families, who face compounded forms of exclusion and harm.
Instead of communicating care or concern through awareness campaigns and lighting it up blue this year, consider learning about initiatives led by autistic people such as #RedInstead, Autism Acceptance Month and others. Here are five things that autistic people have been saying for years that require the attention of those who claim to intervene in the name of autism:
1. Awareness
The idea that “awareness” of autism is needed suggests there is widespread ignorance of the existence of autism. The explosion of autistic self-advocacy, social media presence and representation in mainstream media and television shows like Atypical suggest otherwise (though mainstream media still limits diverse representation).
Autism was once considered a rare condition, but one would have to be vastly disconnected to be unaware of it today. Instead of awareness, we need to challenge the ableism of autism awareness campaigns, advocacy and research — the persistent barriers and attitudes that value and favour able-bodied people. This devalues and excludes embodied difference, or only considers autism as something that must be “overcome.” People don’t get over autism — they live with it. And many live with it joyfully.
2. Perspective
A focus on autism awareness privileges the perspectives of non-autistic people. The organizations that support awareness such as Autism Speaks, are run mainly by non-autistic people and rarely include autistic adults.
Challenging ableism also means challenging the leadership and power of campaigns such as Light It Up Blue for autism and World Autism Day. Rather than focus on charitable organizations and “helping,” we need to turn our attention to self-advocacy, alternative activities, forms of support and research led by autistic people themselves.
3. Leadership
Much work is needed to achieve accessible and culturally relevant policies and practices for autistic children and adults, the latter of whom are frozen out of policy considerations. The continued lack of guidance and leadership from autistic people serves as a painful reminder that lives that deviate from what constitutes “normal” are only included on terms dictated by those policing the boundaries of what is considered “normal.”
Taking seriously the perspectives advanced by autistic people, means asking them what types of supports can make a qualitative difference in their lives. It means turning to the vast body of work by speaking and non-speaking people who identify as autistic. It means moving the focus away from blue lights, ribbons or other gimmicks, and working towards a sustained challenge to systemic ableism.
4. Neurodiversity
Becoming knowledgeable or informed about autism means appreciating the vast differences among autistic people and the many varieties of what it means to be autistic. Not all autistic people are alike and, thankfully, there are also many viewpoints. Troubling tropes of autism as a disorder and burden must be left behind, and replaced by a form of neurodiversity that embraces diversity.
5. Inclusion
We need to recognize and rectify the persistent exclusion of perspectives and initiatives advanced by members of Black, Indigenous and People of Colour (BIPOC) communities from autism awareness campaigns, as well as diagnosis and support. This includes embracing different cultural understandings of autism that depart from a western biomedical lens focused on deficits.
This April, and every month, we urge you to reconsider the meaning of World Autism Month from the perspective of autistic people themselves.
This article was co-authored by Estée Klar, a Ph.D. in Critical Disability Studies and Neurodiversity and an artist. She is the former founder of The Autism Acceptance Project in Canada (2005-10) and is presently co-collaborator with her non-speaking son/poet/artist, Adam Wolfond, and other speaking and non-speaking neurodiverse people at dis assembly: a neurodiverse arts collective.
Associate professor Disability Studies and Inclusive Education, Brandon University
Professor, health policy, disability, public policy, social movements, L’Université d’Ottawa/University of Ottawa
This article originally appeared on The Conversation
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.
How Can we Improve Media Representations of Autism?
How Can we Improve Media Representations of Autism?
Collaborate with Autistic People
Have you ever seen an autistic character on TV? Chances are, you answered yes. Since Rain Man introduced autism to the general public in 1988, autistic characters have become increasingly common on TV [1] and in movies. Learning about autism from autistic characters can help people understand and accept autism. Indeed, high quality contact is linked to more positive attitudes toward diversity [2]. However, media representations also have the potential to decrease autism acceptance by promoting stereotypes [3]. So, how can we improve media representations of autism? Hint: You would get the same general answer if you asked other types of minorities how to represent their identities more accurately.
Shows with autistic characters are often developed with substantial input from clinicians and family members of autistic people. For example, the puppeteer behind Julia, an autistic character who is wholeheartedly accepted by her peers on Sesame Street, uses her experiences as the mother of an autistic child to create a believable character. Yet autistic people themselves are generally NOT part of the process of developing autistic TV characters. This lack of involvement is surprising given that autistic people are often more knowledgeable about autism than others [4] and bloom socially through engagement in theatre [5].
By leaving autistic people out of the process of developing autistic characters, we risk creating one dimensional characters that represent only limited aspects of the autism spectrum. Indeed, most autistic TV characters are highly gifted and eloquent, albeit with social difficulties. Not only are savant-like characters overrepresented in media representations of autism, the gifts autistic characters exhibit show repetitive tendencies on the part of content creators. For example, the autistic characters in two separate TV shows (Touch, one of the few shows to portray a non-speaking autistic character, and Waterloo Road, one of many shows with verbally precocious autistic characters) demonstrated savant skills by reflecting on the Fibonacci sequence. Repetitive representations of autism may reinforce stereotypes while also depriving the large population of autistic young people of role models they can identify with.
We, 3 autistic college students, 1 autistic college graduate and a professor, would like to share personal reflections from the autistic members of our team about how media representations of autism get it right, get it wrong, and can get it better.
What do you like about how autism is represented in the media?
Billy: I would say in the past 10 years alone, we’ve come pretty far in the way autism is shown in the media. 10 years ago, the characters you saw on TV shows who had autism were side characters whose only defining characteristic was their disability. Today, you see characters on the spectrum who are stars of their own show like Atypical (2017) and the Good Doctor (2018) and are portrayed as complex characters in their own right. On the Good Doctor, Shaun is shown to be going through personal struggles of his own unrelated to autism such as him having not fully recovered from the trauma of his older brother’s death when they were kids.
Jin: I think Adam (2009) was a good portrayal if you consider the fact that the titular character is not only autistic. He’s depressed (his father died shortly before the film’s start) and that exacerbates the classic withdrawn symptoms that might present in someone who’s autistic. I heard complaints from someone that he didn’t end up “getting the girl” at the end and that this reflects negatively on autistic people and their ability to get into relationships, but personally it felt clear that they weren’t right for each other at the time (I didn’t like Beth anyway). It’s not like they made Adam void of sexual attraction (an issue with disability representation in general), because he very clearly voices it. I think Adam is a good look into someone who has to navigate depression and anxiety along with functioning differently in general.
What do you NOT like about how autism is represented in the media?
Nick: One of the biggest problems with characters with disabilities, not just autism, in media is that when writing a character with a disability, one can fall into the trap of writing a disabled character before one writes a character with a disability. In layman’s terms, the disability becomes the character instead of informing it. However, I’d argue a bigger problem is a hesitancy to portray people with autism who can be unpleasant on purpose. One example of this is The Good Doctor, where all of the ideas the autistic doctor has worked. It would have been a lot more interesting if something that he thought of didn’t work and he would have to take the responsibility of having made a decision that caused a patient’s death.
Billy: One of the biggest problems with how autism is represented in the media is that when a character with autism is portrayed on television, they’re presented as one dimensional characters whose depth is the stereotypical symptoms of their disability. Like Nick said, their disability becomes their character. In Atypical, the main character Sam, who has ASD, is portrayed as hopelessly naive with no idea how to approach social, and by extension romantic situations. We’re also presented as savants with total brilliance in one area, but disabled in all other areas. This goes back to Rainman (1988), in which Dustin Hoffman’s character is portrayed as a math genius, but is unable to take care of himself and lives in an institution.
Bella: Unfortunately, the media doesn’t include everyone on the autism spectrum. While the Good Doctor has an autistic character named Shaun who works as a surgeon in a hospital, there are not a lot of TV shows that show how autistic people struggle to get jobs. Sheldon, a scientist that shows autistic symptoms on the show Big Bang Theory, lived with his friends before he got married which is in contrast to stereotypes about how autistic people live in society as people who can’t have jobs or get married.
How can media content creators better involve autistic people in the process of developing media?
Nick: The best way to write a character with autism is to have it inform their character instead of being their entire character. For example, in Mary & Max (2009), Max is a man who is a social outcast because of the way the world has treated him. This is not always obviously reflective of autism.
Bella: Directors could research what life is like for autistic people. Although some shows illustrate how autistic people deal with their lives, they need to include autistic characters who display diverse symptoms. Autistic people can exhibit great strengths in technology, so directors could hire them to work at their companies. People can interview autistic people so that viewers can understand what life is like for autistic people. If TV shows could show how autistic people struggle to live in society, then society would understand more.
Here are some actionable insights for storytellers:
Media creators should employ autistic people as writers, actors, technicians and in other roles helping to create autistic characters. Rather than just having one isolated autistic character in each show, thus magnifying the sense that autistic people are different from “the norm,” diverse communities of people should be represented.
Greater representation of non-speaking autistic people is needed. Autistic characters should be as complex as any other character, with autism one aspect of their multifaceted identities. Autistic characters should have opportunities to succeed and to fail, to help and to be helped, and autistic people should play a central role in helping to create them.
Kristen Gillespie-Lynch
The graduate Center; City University of New York
Collaborator of the Center for Scholars and Storytellers
Nicholas Tricarico
The College of Staten Island; City University of New York
Billy Pinkava
The College of Staten Island; City University of New York
Bella Kofner
The College of Staten Island; City University of New York
Jin Delos Santos
Hunter College; City University of New York
References
1Morgan, J. (2019). Has autism found a place in mainstream TV?. The Lancet Neurology, 18(2), 143-144.
2Corrigan, P. W., Larson, J., Sells, M., Niessen, N., & Watson, A. C. (2007). Will filmed presentations of education and contact diminish mental illness stigma?. Community mental health journal, 43(2), 171-181.
3Draaisma, D. (2009). Stereotypes of autism. Philosophical Transactions of the Royal Society B: Biological Sciences, 364(1522), 1475-1480.
4Gillespie-Lynch, K., Kapp, S. K., Brooks, P. J., Pickens, J., & Schwartzman, B. (2017). Whose expertise is it? Evidence for autistic adults as critical autism experts. Frontiers in Psychology, 8, 438.
5Corbett, B. A., Gunther, J. R., Comins, D., Price, J., Ryan, N., Simon, D., ... & Rios, T. (2011). Brief report: theatre as therapy for children with autism spectrum disorder. Journal of autism and developmental disorders, 41(4), 505-511.