Ableism and Authenticity

Kathryn Cambrea

Kathryn Cambrea, Editor in chief

There are many words that pertain to discrimination and views against one particular group of people. Racism embodies discrimination based on skin color. Sexism means discrimination based on gender, with misogyny meaning discrimination toward members of the female sex specifically. Beliefs and incidents of homophobia oppose homosexuals, while beliefs and incidents of xenophobia oppose people of particular ethnicities. 

What about the word, “ableism”? Unfortunately, it does not ring in people’s vocabulary, nor in the media, as much as it should, for if it did, more awareness would be created. In essence, ableism encompasses discrimination toward people with disabilities. Even as a sister of someone with disabilities, I have not learned about the existence of this word until not too long ago. But I have seen it and so have you. In fact, I would argue that it is so incredibly pervasive in our media and even in our own lives, that we do not question it. 

For instance, when watching a newscast, wouldn’t you expect the subject to be interviewed as a source? Wouldn’t press coverage of an issue or topic pertaining to a specific minority not include anecdotes from said minority? Then, why do we not question when people with disabilities are not interviewed for their own stories? Why do we not question the continual practice of their condition being prioritized over who they are? Why do we not question the idea that stories, even in entertainment, are crafted by people without disabilities, which not only creates prejudicial and unauthentic stories, but affects how people think of the disabled community?

My midterm presentation and first half of my research paper for my senior seminar course dissected these flaws in-depth. But, now, I want to hone in why this issue is relevant today and the need for authenticity.

In fact, a recently released film, Sia’s 2021 movie, “Music,” is an example of a current work indicative of ableism, so much so that an entire petition was created to have it stripped of its Golden Globe nominations. Why is this film ableist? It did not include people with disabilities, and the only way to achieve authenticity is to include these people. The character, Music, has autism, and is not played by someone with this disability. Instead, the character is played by Maddie Ziegler, who does not have autism.

Unfortunately, the ableism does not stop there in that Sia did not include people with disabilities in the process of making this movie. According to Rosanna Kataja (who labels herself as an autism ally) and Nina Skov Jensen (who is autistic), the women who composed the petition, “When representing autistic people, listen to actual autistic people, not just social workers, parents and organisations. We are the only ones who knows what is best for us and what it is like to be us.” 

Regardless of who a story is about and quite frankly, regardless of whether or not the subject is a real person or a fictional character, the story should be treated delicately and with empathy, for made-up characters should represent real people, and real people are influenced by media. People with disabilities should be no exception.

Rather than talk to people with autism through thorough research, according to the petition, Ziegler simply watched YouTube videos of kids with autism having meltdowns, and Sia avoided the opportunity of hiring an actress with autism, which could have very well made the movie authentic. 

A commonality between “Music”  and the 1988 film, “Rain Man,” is that both Ziegler and Dustin Hoffman do not have autism and play characters with this disability. Unlike Sia and Ziegler, Hoffman took the time to learn from people who have autism and according to an article from The New York Times called, “On the Road with Hoffman and Cruise,” Donald Chase writes that Hoffman read books about autism and conversed with their authors, spoke to experts on autism, and even met with and studied people with the condition.

Authenticity was crucial to Hoffman who cared about everything in his portrayal of Raymond Babbitt, including mannerisms; Chase writes, “‘I accepted the fact that in order to be authentic, Raymond couldn’t have the dramatic arc that actors always look for in roles,’ he [Hoffman] says. ‘And that instead of a full-scale painting, I would have to do a pen-and-ink drawing – a poem, a haiku.’” Rather, it is Raymond’s brother, Charlie, played by Tom Cruise, who undergoes significant character development through his acceptance of Raymond’s disability as well as of Raymond as his brother. 

An interesting example of a film that includes people with disabilities is “The Ringer.” Unlike Sia, Peter Farrelly saw this film as an opportunity. According to “The Special Olympics approve of ‘The Ringer,’” from The Associated Press, “‘I wanted this movie out there,’ said Peter Farrelly, who co-produced the film with his brother, Bobby. ‘It’s very funny, but I also saw the potential for changing people’s perceptions of people with intellectual disabilities.’” The film has a very atypical approach in that Steve Barker, (played by Johnny Knoxville), the main character, is not disabled and pretends to be. It identifies ableism, and once Barker is exposed to Special Olympic athletes, he befriends them and undergoes significant character development. They are included in the fabric of his life, which reinforces the significance of authenticity.

Thus, the film serves as a metaphor for how the disabled should be included in press coverage and entertainment representation. Barker’s ableism points to real ableism and errors people make in films; such ignorance is mindless but here, ignorance is used with purpose to convey the world’s discrimination and views toward people with disabilities. The only reason why it was able to successfully achieve this is through including this community. According to The Associated Press, this film is a movie watched by many with the most actors who actually have intellectual disabilities, not to mention that the Special Olympics was involved in the process of creating it. 

The same works, whether they may be newscasts, films, or TV shows, may indicate simultaneous ableism and authenticity, but regardless of how people view them, people with disabilities have to be included and the more they are included, the more authentic and honest these stories will be.

People with disabilities must be sources in the news and their condition should never be prioritized over who they are. Through my research, I learned about an incredible initiative called the Disability Media Project, spearheaded by a woman named Suzanne Levine who actually has a disability. In her article titled “Narrowing the perception gap,” in Quill magazine, she writes, “Unless journalists are made aware of the diverse perspectives of disability, they will continue to unknowingly perpetuate stereotypes and provide unbalanced reporting.”

The reporting is not one-sided simply in that it does not always include people with disabilities. It is important to remember that people with disabilities, like anyone, are different from one another. Think about it. An effective journalist is supposed to be objective and interview people who are advocates, opponents, and even somewhere in the middle regarding any discussion or issue. Everyone is different, and this extends to people with disabilities, for they have different views as well. Yes, disability may vary from person to person, as well as the severity and level of independence, but more importantly, these people are different simply in that they are not the same individual. Not only do they need to be contacted for news coverage, but they need to be listened to, for everyone’s experience is different. You don’t know anyone’s story unless you speak to and listen to them. 

The need for authenticity should be introduced in the classroom. For anyone pursuing a career in the media, whether it may be in news or entertainment, they are bound to be storytellers, and every story should be told authentically. As part of Levine’s Disability Media Project, Levine not only envisioned teaching college students studying communications about disability coverage and representation, but training professionals such as journalists and people in the communications field. This is imperative in that learning should never be restricted to the classroom, and in order to make a significant change of any kind with a positive societal impact, everyone needs to participate. Everyone should be willing to learn in order to grow, be respectful, and do their jobs well. 

I propose taking this a step further and making people learn about disability in various capacities, regardless of a student’s major and anyone’s profession. STAC has done well in adding a Human Rights and Social Justice minor to its curriculum. The description on the College’s webpage for this minor reads, “This minor concerns the promotion and protection of human dignity irrespective of race, color, social class, gender, sexual orientation, religion, culture, or nationality, and involves an examination of societal problems of hunger and poverty, education, immigration, discrimination, and ecological issues.” However, it is worthy to note that the word, “disability,” is not mentioned in this description, which would make it even more inclusive and might just suggest how ableism is not as recognized as other forms of discrimination.

The need for authenticity is made clear on online platforms, and these platforms have proven to be a wonderful place for authenticity for people with disabilities. According to “Disability Media Education and Advocacy: Addressing Attitudes Toward Disability on College Campuses,” from the Journal of Postsecondary Education & Disability, online platforms provide a sense of community for people with disabilities in colleges and universities and beyond. This is extraordinary in that we are hearing these authentic stories from people with disabilities directly; they are their own outlets with voices not tainted by a show operating through an ableist lens.

Also, on the Internet, we can communicate instantly, so not only can people with disabilities now communicate with each other like never before, but with people who do not have disabilities to better educate them. Journalists and storytellers in the media are bound to be consumers of this content, which is exciting in the positive implications that could hold for disability coverage and representation if these people decide to truly listen to and even seek out the voices of people with disabilities in their stories.

One revolutionary online platform is the YouTube channel of the organization, Special Books by Special Kids (SBSK), in which the nonprofit’s founder, Chris Ulmer, interviews people with disabilities and their families to not only educate audiences about the disability, but to moreover listen to the individual who lives with it and to learn about different facets of that person’s life, such as relationships, achievements, and aspirations. This platform amplifies the voices of people with disabilities. One of my favorite videos from the channel features Tatiana A. Lee, an actress and model who happens to have spina bifida. The video is insightful in that she explains how people with disabilities are often not given the opportunity to play the roles of disabled characters, and how even when she has attended events in which diversity was the topic, disability is not always mentioned. 

Another YouTube channel that is very educational and emphasizes authenticity is, “Squirmy and Grubs,” a platform managed by an interabled couple. Shane Burcaw has spinal muscular atrophy (SMA) and his wife, Hannah, does not have a disability. In one video, the couple highlighted an opportunity for children with SMA to audition for a role of a child with SMA and Shane said that too many times, characters with disabilities are not played by people with those conditions. The couple, who is quite humorous, at times uses ableist video titles as clickbait to shatter stereotypes. In a video called, “The Happiness I Sacrifice For My Disabled Fiancé,” Shane and Hannah respond to stereotypes of Hannah sacrificing her life and people like Shane never finding love with efficacy by highlighting that these stereotypes are extremely offensive not only to them, but to other interabled couples.

Perhaps, if interabled couples were represented more often and more accurately in the news and entertainment, there would be less stereotypes. Being that these stereotypes came to the couple in the form of instantaneous comments, they were able to respond in that same manner. With discussions like this, people with ignorant and misinformed judgments are corrected. Both of these platforms, among others, amass a large following, meaning that more people learn about disability from this minority. 

All journalists and storytellers need to do is listen to these voices, too. That way, such authenticity, inclusion, and respect extend beyond online platforms, into our news and entertainment, and even into our lives. Evidently, people extract information from their media and all of the views that come with it. This authenticity and respect will not permeate the news and entertainment until they are recognized as pivotal by people, and they will not be exposed as pivotal to multiple people until they permeate the news and entertainment at large. Simply acknowledging that ableism exists is a first step. Neither will be achieved without including people with disabilities.