When I saw the 2019 film The Farewell, it put into words what I couldn’t convey for a long time. In the movie, a young Chinese American woman returns to China to visit her grandmother, who has just received a terminal cancer diagnosis. However, the rest of the family has decided not to tell the grandmother that she is dying, partly because of their cultural beliefs. As the credits rolled, I realized how the film helped to illuminate the behaviors of my own Asian family: the stigma and taboo surrounding my dad’s death and the reason we had kept it a secret for so long. When people who didn’t share my cultural background asked me about the circumstances of his death after I saw The Farewell, I referenced the film as a way to help them understand my story.
Representation matters. In this case, representation of my AAPI heritage in a film written and directed by a fellow Asian American made me feel seen, heard, and validated. It not only helped name what I was going through and showed me that I wasn’t alone but also helped better explain my experiences to others who didn’t share my cultural background.
Asian American representation in TV, film, and other media has grown, and I hope disability representation will follow suit. We’ve already learned that people with disabilities are the largest minority group in the world—27 percent of adult Americans1 and 15 percent of people worldwide are disabled2—yet we still find ourselves underrepresented in the media. And if we do appear, we are often inaccurately or insensitively portrayed.
Nielsen found that in September 2022, just 4.1 percent of all titles on TV included disability themes, and when shows did feature disabled characters, their total screen time was significantly lower than that of non-disabled characters: 8.8 percent of screen time for characters with non-apparent disabilities and 0.4 percent for characters with apparent disabilities. In the movies, only 2.3 percent of all speaking roles across the one hundred top-grossing films in 2019 featured a character with a disability, with no meaningful changes to the statistics over the prior five years.3 With these abysmal numbers, it’s no wonder that disabled people are 34 percent more likely than the rest of the population to report that we feel underrepresented on-screen.4
Underrepresentation in media is an example of an exclusionary microaggression that can make us believe that our stories don’t matter. Unfortunately, underrepresentation isn’t the only issue we deal with. Disappointingly, the representation that does make it to the screen is often rooted in inaccurate or insensitive stereotypes of disabled people as “abnormal,” “pitiful,” or “charity cases.”5
“Disabled people either play villains or happy snowflake angel babies. We’re either charitable, inspirational, never do naughty things in our life, or we’re murdering babies because we lost an eye in a dart accident,” says actor and comedian Maysoon Zayid.6 In the 2016 film Me Before You, based on the book by Jojo Moyes, a man becomes quadriplegic in an accident and chooses assisted suicide, reinforcing harmful stereotypes that just because we are disabled, we would not want to live. Another example is the 1988 film Rain Man. Dustin Hoffman’s character is autistic and portrayed as a savant, perpetuating the stereotype that all autistic people are solely defined by exceptional skills. Because of such extreme media depictions, it is no surprise that disabled people are still seen as one-dimensional tropes rather than real, multifaceted human beings, both in fiction and in real life.
The media we consume has a profound power to shape the way we think. The constant stereotypical portrayals of disabled people perpetuate ableism in our society, and we easily inherit these harmful beliefs because they are all we see and know.
To make things worse, the reason these inaccurate media portrayals exist is that, more often than not, non-disabled people are the ones who write, produce, direct, or act out our stories. Disabled people are underrepresented not only on-screen but also behind the scenes, which means we are not in full control of our narratives. A 2018 study from the Ruderman Family Foundation found that almost 80 percent of all disabled characters on TV were portrayed by non-disabled actors7—what the disability community calls “cripping up.” According to actor and filmmaker John Lawson, nearly half of all actors who were nominated for the Academy Awards for playing a disabled character went on to win; however, of the almost thirty Oscar-winning acting roles featuring a character with a disability, only three were portrayed by someone with that disability—Harold Russell in 1947, Marlee Matlin in 1986,8 and most recently Troy Kotsur in 2021.9 Behind the scenes, disabled screenwriters represent only 0.15 percent of first-look and overall deals, 3 percent of upper-level TV writers, and less than 1 percent of the Writers Guild of America (WGA). Without disabled writers in the room, our stories are told without us.10
Accurate and authentic representation matters. Representation alone will be empty and performative if your characters are disabled but the people who create them are not or if these disabled stories promote negative and untrue stereotypes of us. As Vilissa Thompson, disability rights activist and founder of Ramp Your Voice!, says, “In order for disabled characters… to be authentically portrayed, we need actually disabled people consulted, writing, producing, directing, and casted to tell our experience the way it should be.… Nothing about us without us.”11
It is not difficult to cast disabled people as disabled characters or to make films written and directed by disabled people. Although the industry has a long way to go, recent success stories include Zack Gottsagen in The Peanut Butter Falcon, playing a young man with Down syndrome who runs away from his care facility to become a wrestler; the Academy Award–winning CODA about a hearing child with Deaf parents that cast Deaf actors; and Crip Camp, an Oscar-nominated documentary about a summer camp for teens with disabilities who went on to become activists. The British comedy-drama series Sex Education has been praised for its inclusive approach to topics like sexuality and disability, with George Robinson, an actor who uses a wheelchair, cast as Isaac and Alexandra James, a Deaf actress, cast as Aisha.
Matthew Von Der Ahe and Kennedy Garcia, a couple, are actors and public speakers who have Down syndrome. They were cast in a 2023 McDonald’s commercial for the Super Bowl. Von Der Ahe shared,
It’s so important for people to see couples like us, represented in film and television, in a light that makes us more alike than different. The portrayal of intellectually or physically disabled persons in relationships is crucial for challenging stereotypes and fostering a more inclusive society. It helps break down misconceptions, showcasing that individuals with disabilities are fully capable of experiencing and contributing to the beauty of love and companionship, just like anyone else. This representation not only promotes understanding but also empowers those with disabilities to pursue and embrace fulfilling relationships, reinforcing the idea that love knows no boundaries.12
Studies have found that increased visibility and positive representation in media help to reduce harmful stereotypes and play a significant role in changing social attitudes. For example, a 2017 study found that higher media exposure to homosexuality fostered more accepting attitudes toward the LGBTQIA+ community.13 As of 2024, the Academy of Motion Picture Arts and Sciences has established new rules that films must meet at least two out of four standards for representation—on-screen, creative leadership, industry access and opportunities, and audience development (meaning, community and fan engagement)—in order to qualify for a Best Picture award.14
It is also important to remember that disabled people don’t belong just on a screen or behind it—we also belong in every field and industry, whether it is entertainment, education, tech, business, science, or politics. We belong in all spaces, like restaurants, gyms, and concert venues. Just because you don’t see us doesn’t mean we don’t exist—we’ve always been here, and we demand to be seen and heard in an ableist world that erases us.
For example, in 2021, the deodorant brand Degree published an open letter in the New York Times calling for more disability representation in the fitness industry. According to the Lakeshore Foundation, 81 percent of people with disabilities said we did not feel welcome in fitness spaces, a two-pronged problem because disabled athletes already “face heightened discrimination and bias,” which is “compounded by the lack of representation of disabled trainers and coaches in the fitness industry and the limited access to inclusive fitness spaces.”15 In response, Degree launched the #TrainersForHire initiative, encouraging fitness companies to hire disabled trainers in various athletic fields, from CrossFit and powerlifting to paracycling.
I was part of that 81 percent for a long time. That has changed as I’ve become more involved in the disability community, met adaptive athletes, and been introduced to different adaptive sports programs that have made fitness spaces less intimidating. I am officially a triathlete, having completed my first triathlon in March 2024!
In medicine and research, disabled people are systemically excluded from and underrepresented in clinical trials,16 which ironically further drives the health disparities of people with disabilities even though some disabled people expressly wish to participate in such trials to further medical research. In 2017, actor, athlete, and ambassador for the Global Down Syndrome Foundation Frank Stephens testified before the US Congress about the importance of including people with Down syndrome in medical research on diseases like Alzheimer’s, autoimmune disorders, and cancer because of the extra copy of chromosome 21 that they have. “I cannot tell you how much it means to me that my extra chromosome might lead to the answer to Alzheimer’s,” Stephens said, to a standing ovation.17 Four years later, a medical team at Linda Crnic Institute for Down Syndrome received a $4.6 million grant to recruit young adults with Down syndrome to study Leukine, a promising drug for Alzheimer’s.
In education, representation is especially crucial because students are learning valuable lessons from their society, environment, teachers, and peers at an impressionable young age. Disability representation in the classroom can look like diverse course material and educational topics, diverse educators, and diverse teaching and engagement styles with students. Such representation helps students to feel a sense of belonging, which increases their confidence and academic achievement.18 Representation also empowers students and shows them what is possible. For example, when students don’t see disabled people represented in career or academic opportunities, they may receive the message that such professional roles are not available to them. But when they do see successful role models, it paves the way for them to realize that success is possible for them, too.
When Ali Stroker became the first wheelchair user to win a Tony award for her role in Oklahoma! in 2019, she said in her acceptance speech, “This award is for every kid who is watching tonight who has a disability, a limitation, a challenge, who has been waiting to see themselves represented in this arena. You are.” In an interview, she added, “As an eleven-year-old girl pursuing this dream, I was looking to see who is there and who is working and has disabilities or is in a wheelchair, and there was nobody. It makes me feel amazing to be able to be that… because I did not have that.”19 In 2023, the musical How to Dance in Ohio, inspired by Alexandra Shiva’s 2015 HBO documentary, made history as the first Broadway musical to cast autistic actors as autistic characters.20 I even made a trip to New York City just to see the show and witness history in the making.
As a disabled person of color, even the fact that I get to write this book is a win for representation. We are seeing more children’s books featuring disabled characters and more disabled authors publishing books, but there’s still much to be done. The root of this is the lack of diversity in the publishing industry. According to the 2019 Diversity Baseline Survey from Lee & Low Books, 76 percent of the publishing industry is white and 89 percent identifies as non-disabled.21 This matters because books shape culture, similar to film and TV, and those who work in publishing are the gatekeepers who determine which stories are amplified. When you don’t have disabled editors or disabled literary agents, there might be a disconnect in understanding disabled characters or stories written by disabled authors that might make such books less likely to get published. “We can’t get these books published until we have more decisionmakers and people involved throughout the entire production process who come from all these different backgrounds,” says Alice Wong, author of Disability Visibility.22
If you have gotten this far, thank you for your support of this book. Reading and consuming content by disabled authors like me creates more possibilities for other disabled authors to have their books published.
And when we can’t find ourselves represented in traditional media like TV, film, and books, we turn to social media. Social media representation, including digital formats like podcasts and blogs, validates our experiences, gives us a platform to own our stories, and helps us find our voice and community. When disabled people show up on these apps and platforms to talk about our lives, we are debunking misconceptions and filling in gaps in classroom and industry conversations elsewhere. Our content not only shapes broader societal attitudes about disability, especially among the majority Generation Z audience of TikTok, but also has a positive impact on the disability community itself.
“The act of posting a TikTok helps [disabled people] reclaim their narrative and find a community,” says Meryl Alper, an associate professor of communication studies at Northeastern University. “This normalization can be really powerful for young disabled people and can really change the trajectory of their lives in terms of self-advocacy,” adds Elizabeth Ellcessor, an associate professor of media studies at the University of Virginia.23 I even noticed a shift in myself when I first started making content on TikTok. It was the place where I first got comfortable talking about my brachial plexus injury. Through constant video engagements as I shared with others how I lived with my paralyzed arm, I learned how to better embrace my body and myself.
Studies have also shown that some of the best ideas for inclusive assistive technologies and design concepts come from TikTok disability content creators who share videos of our creative “life hacks” or the adaptive games we come up with, such as a person with quadriplegia holding a fork with a hair tie or two wheelchair users pushing a yellow block into each other’s territory in a strength competition.24 Nicola Swann, owner of Made with Mud, designed the Digni-TEA (dignity) mug in 2021 at the request of a customer whose partner had Alzheimer’s and needed a mug with two handles—the only other options at the time were plastic sippy cups. The mug went viral on social media, and since then, she has introduced new designs that benefit people with different disabilities.25
Here’s the thing: disability-inclusive content is good for business. Research shows that social media posts from disability content creators scored 21.4 percent better in average media value and had 20.5 percent more interactions than posts from creators without disabilities.26 Disabled content creators have shown that we can provide big brands with an authentic way to connect with disability-centered audiences.27 However, representation in traditional media, such as advertising, is still lagging, with only 1 percent of prime-time TV ads featuring disability-related themes or visuals, while only 3 percent of ad spending went to disability-inclusive ads.28 A lot of this hesitation comes from brands’ fear of getting it wrong and reinforcing problematic depictions, which they deem risky business, or thinking that disability is “beyond their scope” or not their responsibility or that the disability audience doesn’t have dollars worth capturing.29 Stephanie Thomas, disability fashion stylist and founder and CEO of Cur8able, tells me, “According to Vogue Business, DEI budgets are practically non-existent.30 Many managers are tired of being ‘lectured’ about the need for diversity while not being trained to ethically, profitably, and authentically develop long-term DEI goals.”31
But some brands have paid attention. One success story is Tommy Hilfiger’s adaptive collection, which focuses on inclusive design for the needs of all people, such as one-handed zippers, magnetic buttons, and open seams to accommodate prosthetics. The #TommyAdaptive campaign “benefitted from the support of 26 different influencers, including three with disabilities”:32 Jillian Mercado, Lauren “Lolo” Spencer, and me. On social media, the campaign received a 40 percent higher engagement rate and average media value per post than the fashion industry average,33 demonstrating the power of disability representation. As Stacie de Armas, senior vice president of Nielsen, says, “Inclusion is not a trend but a necessity that must be understood and valued.… The success of disability-inclusive content on social media should be a signal for traditional media.”34
We live in a culture where people are quick to cancel a person or a brand for getting it wrong, but brands need a little grace and space to get things wrong before they can get things right—as long as they are open to feedback. James Embry, an advertising creative director who has a seven-year-old son with Down syndrome, says, “Things might need to get a little uncomfortable before we get to a point where it’s typical to have people with disabilities in adverts.… Because that conversation is an important conversation to have. [Clients and agencies] should stand up to that conversation and say, ‘We’re including people.… If you don’t like it, tell us how you would like to see it, and we’ll remember that for next time.’”35
Of course, it’s better to avoid getting things wrong altogether if you can manage it, and a great way to do that is to partner with disability organizations from the get-go and work directly with disabled consultants and talent.
There is no excuse not to work toward authentic disability representation, no matter what space or field you find yourself in. Disabled people exist everywhere, and we should be represented accordingly, with the power to control our narratives.