At Hand-in-Hand, we often find ourselves reminding people that words matter. The way we talk about or describe someone can change the way they’re perceived entirely. Something we talk about less often, that is just as important, is how people are represented in pop culture. Disability representation in fictional characters and famous figures influences society’s views on individuals with disabilities in our everyday lives. By having more accurate portrayals in movies and pop culture, the stigma surrounding disability may start to dissolve.
Annie Segarra is an advocate for disability rights, using her social media following to start discussions about accessibility and media representation of people with disabilities. She has Ehlers-Danlos syndrome (a connective tissue disorder) which results in her sometimes using a wheelchair. Recently, she was a guest on the podcast Stuff Mom Never Told You with hosts Anney Reese and Bridget Todd. In the episode “Disabled Isn’t a Dirty Word”, she discussed the problematic way people with disabilities are represented in the media today.
Disability Representation In Fictional Characterization
Segarra argues that mainstream movie characters with disabilities are either portrayed as being tragic and depressed, or they exist only to further the narrative of the (typically able-bodied) main character. She cites several examples, including Me Before You, a movie about a quirky woman who becomes the caretaker (and love interest) of a wealthy banker paralyzed in an accident. The wealthy banker is portrayed as a bitter, miserable man because he has a disability - sending a message that people with disabilities are incapable of living happy and successful lives.
Another example is The Ringer, which stars Johnny Knoxville as an able-bodied and typically developing individual who poses as a contestant in the Special Olympics in order to pay off a debt with the prize money. This comedy uses crude humor and plays off of stereotypes of people with disabilities to entertain the audience. While the message in the film may be less than stellar, The Ringer (as well as Johnny Knoxville) have received praise for ensuring that every character is accurately portrayed by an actor with a disability in real life.
While Hollywood has a long way to go in the way of disability representation, there are some films that feature more positive representation. Forrest Gump, Avatar, and the X-Men series all feature main characters with disabilities. Forrest Gump and Avatar use disability as a way for their audience to feel compassion toward these characters and realize they’re capable of significant accomplishments. The X-Men movies use both real disability (as Professor X’s paraplegia and Wolverine’s post-traumatic stress disorder) and metaphorical disability in their stories. The “mutant” X-Men are stigmatized by the general public because their powers make them different. However, the message expressed in every movie can be summed up best by Storm in X-Men: The Last Stand, “They can’t cure us. You want to know why? Because there’s nothin’ to cure. Nothing’s wrong with you. Or any of us, for that matter.” Similarly, there’s nothing wrong with individuals with disabilities or different needs. Some may need adaptations or assistive devices to successfully navigate their daily tasks, but that’s true of people of all abilities!
Portrayal In Pop Culture Relating to People of Color and the LGBTQ+ Community
Pop culture has been problematic in their portrayal of people with disabilities beyond fictional characters in movies. Segarra shared an example of a book which went unpublished because the main character, who had a disability, was deemed “too happy” by the publishing company. The company didn’t believe that a character with a disability would be relatable to their audience, so they wanted the disability to be connected to a supporting character instead.
Segarra furthers her argument by pointing out that this mindset was (and sometimes still is!) the norm regarding people of color and those in the LGBTQ+ community. Particularly in page-to-screen adaptations, filmmakers have come under fire in recent years for casting white or cis-gender actors in roles that represent characters of color, or able-bodied actors to represent people with disabilities.
Amid this controversy, films such as Netflix’s To All the Boys I’ve Loved Before offer a breath of fresh air with its casting of an Asian-American lead actress at the insistence of the director and the writer of the book the film is based on. Other examples of Hollywood and pop culture getting it right are:
R.J. Mitte, who has Cerebral Palsy, portrayed a character with the same diagnosis on the show Breaking Bad
Lauren Potter, who has Down syndrome, played a fun and energetic character on Glee
Briony Williams has, what she calls, a “little hand”, but the Great British Bake Off didn’t draw attention to it and only focused on her baking abilities
As we become more aware of the lack of media representation in all aspects of life, content creators are pushed to create more diverse stories and characters for society’s consumption.
Attempts to Erase or Downplay Disabilities in Celebrities' Lives
By having adequate media representation of fictional characters, we will start seeing a change in the depictions of people in the real world. In particular, people with disabilities should be seen as people first and foremost, and their disabilities should not encompass their entire persona.
As an example of negative stigma surrounding disability, Segarra points out that Stephen Hawking was depicted as being “free” from his disability after his death. People saw Hawking’s wheelchair as a cage that restricted him from living a full life. One of the many issues with this mindset is that it goes against Hawking’s personal views and experience with disability.
Stephen Hawking was an accomplished physicist, author, and cosmologist. Hawking also had a disability, amyotrophic lateral sclerosis (ALS) or Lou Gehrig’s disease, which is a progressive neurological disorder that affects voluntary muscle movement. While many people felt that his disability was restricting, Hawking viewed it as a positive characteristic. He didn’t see his wheelchair and communication device as a burden, but as a tool to improve the quality of his life. These tools allowed Hawking to travel, write, and lecture independently.
After Hawking passed, there was a cartoon made depicting him as being free of his wheelchair in the afterlife. This is troubling because it conveys the idea that the only way individuals with disabilities can be truly free or happy is when they no longer have their disability, which is exactly the opposite of what Hawking asserted throughout his life.
Another example is Frida Kahlo, whose disability was erased from her legacy. Unknown to many, she contracted polio at a young age and had lifelong implications because of it. She laid in bed often and her father helped her find an accessible way to paint from her bed. However, the stigma surrounding disability has prevented a major experience in her life from being included in her life story.
Imagine how society’s views on disabilities might positively change if we stopped eliminating disabilities from people’s experiences. If we showed people of all abilities from history accomplishing great things with accommodations or adaptations, instead of hiding away the challenges they may have experienced to accomplish those great things.
The Representation of Everyday People With Disabilities
Finally, Segarra focuses on the people with disabilities we see or interact with in our everyday lives. One of her first targets are the ever popular “promposals” that plague our social media feeds.
According to her, promposals featuring people with disabilities are seen as an act of charity toward the individual with disabilities, and they focus on the “goodness” of the able-bodied person performing the charitable act. “It almost invalidates the agency of the other person,” said Segarra, of the concept of filming someone for a feel-good moment on the internet.
(There are lots of other examples of exploiting individuals with disabilities for the benefit of able-bodied individuals, including labeling everyday things that individuals are perfectly capable of doing as “inspirational”, or using the phrase, “What’s your excuse?” when an individual with different abilities accomplishes a goal or physical/sports feat.)
These feel-good stories and videos are considered “inspiration porn,” a term coined by Stella Young. Viewers react emotionally because it makes them feel something - either pity for the subject of the video, or joy for themselves because it makes them feel good for reacting positively toward a charitable act.
Instead, stories should focus on spotlighting inequalities in our schools, workplaces, and society rather than rewarding people for doing something that should already be normalized--including individuals of all abilities and treating others with decency, kindness, and empathy. We shouldn’t sensationalize the person who hired a person with disabilities or asked them on a date; we should strive to humanize and respect people who may be different than we are.
How Can We Positively Move Forward?
Use your critical eye! What message does a character with disabilities send about people with disabilities in general? Before you share a “heartwarming” video, ask yourself: am I celebrating someone’s accomplishments, or am I pitying this person?
Finally, we can encourage news outlets and local journalism to use people-first language and to allow people with disabilities to define themselves as individuals first and foremost. As an able-bodied individual, I wouldn’t want someone to define me with words I don’t associate with myself or my abilities, so why do we assume we know the words others want associated with them? If society is going to make a shift towards being more inclusive, we need to pay attention to and try to eliminate divisive or degrading language, and allow individuals with disabilities to determine if and how they’d like people to identify their abilities.
Tackling the negative perceptions of individuals with disabilities in the media and pop culture can feel very overwhelming, but luckily for you, I don’t want you to tackle that big issue! I just want you to work on yourself and the people around you.
Start using a critical eye when consuming content which features individuals with disabilities or information about experiences with disabilities. Then start advocating for people-first language, discussing people’s experiences with them (instead of assuming to know everything about their experience simply because they have a disability diagnosis), and encouraging your family and friends to use correct language in regards to disabilities. By questioning the world around us and pushing for change, we can evolve into a better functioning and more accessible world.