In 2015 the movie Annie was remade to feature a little girl of color, Quvenzhané Wallis. Critics applauded producers for representing a racial minority in a historically white role. Recently, within the entertainment industry, there has been a strong demand for broader representation and cultural perspectives. But where is the representation of disability in children’s media — and the representation of autism, in particular? It’s a complicated issue. Who is shown and who is hidden?
According to the U.S. Census Bureau’s 2010 American Community Survey, roughly 5% of the school-aged American kids reported having a disability. Though that percentage may seem small, that accounts for 2.8 million children, who have a variety of experiences and a range of disabilities, such as vision and hearing difficulty, as well as cognitive, ambulatory, self-care and independent living difficulty. To elaborate, the Individuals with Disabilities Education Act (IDEA), which aims to give all children a free public education, defines “disability” as “mental retardation, hearing impairments (including deafness), speech or language impairments, visual impairments (including blindness), serious emotional disturbance […], orthopedic impairments, autism, traumatic brain injury, other health impairments, or specific learning disabilities; and who, by reason thereof, needs special education and related services.”
So what do individuals with these types of experiences see on the pages of books or on TV screens?
Writer Kira Pirofski describes herself as an “independent scholar,” and writes about a range of issues in children’s literature and schools. In a report she wrote about race, gender, and disability in children’s literature shortly after she obtained a master’s degree from San Jose State University in the School of Journalism and Mass Communications, she argues that literature fails to reflect America’s increasingly diverse classrooms, lacking what she calls “non-gender biased, multicultural, and inclusion literature.” She draws on the work of Blaska (1996), who noted that only 2% of the 500 award winning children’s novels from 1987-1991 featured a character with a disability, though in total, only six books actually had a main character with a disability.
But even then, there’s criticism. The online blog and advocacy group Disability in Kidlit cites Debra Robertson, who wrote Portraying Persons with Disabilities: An Annotated Bibliography of Fiction for Children and Teenagers in 1992, as saying that not every disability has to be a “metaphor for a protagonist’s development”. She also admonished authors who “romanticize” or “stigmatize” disabilities and use the condition as a plot device or “metaphor for a protagonist’s development.”
So what is “good” representation? In order to truly understand good representation, we first need to identify what makes up “bad” representation. Canada’s non-profit, Centre for Digital and Media Literacy, noted common representations and stereotypes of people with disabilities. While conducting research into representation of the disabled population, they came across the organization Media and Disability which stated, “disabled people, when they feature at all, continue to be all too often portrayed as either remarkable and heroic, or dependent victims.” The non-profit broke down the stereotypes into three basic misinformed categories: victim, hero, and villain. They are a lot like they sound: when a character with a disability is portrayed under the victim archetype, they are simply viewed as a “helpless object of pity” in an obvious attempt to garner sympathy from readers, such as Tiny Tim in A Christmas Carol. They list Forrest Gump as another victim, with his intellectual disability being a comedic device — the butt of jokes. Conversely, the hero stereotype can be equally damaging, telling a story where the character “overcomes” their disability, as if in doing so they become “normal” and somehow better than their counterparts who must still manage and live with their disability every day for the rest of their lives. The last stereotype they list is the villain, where physical disabilities or mental illness is considered “motivation” for evil, as depicted in many of the villains in Batman, despite the fact that mental illness is not related to violence. Fact: people with mental illness are more likely to be the victims of violence then they are the perpetrators. These misrepresentations are damaging, particularly when children grow up with them and they permeate everything — books, TV, politics, and education.
“Good” representation lies beyond the addition of characters with disabilities. Because more often than not, they end up as side characters and/or fall into harmful stereotypes. However, we can’t ignore the representation that is successful. Some of Disability in Kidlit’s editors have their own books for older children and adolescents, with main characters with disability and depth — meaning their disability is not their only defining characteristic.
Isn’t it sad that this has to be spelled out? People with disabilities are people first. Why shouldn’t their characters be reflective of that?
In particular, Corinne Buyvis has a book called On the Edge of Gone, which features Denise, a character who must survive the apocalypse and who happens to have autism. Autism is a developmental disorder characterized by deficits in social communication and restricted interests or behaviors. This is especially profound, considering how the condition is more subtle and hidden — not as visible as a person in a wheelchair.
Autism spectrum disorder seems to be gaining more attention in children’s media, in books, and television. On October 21, 2015, Sesame Workshop announced a new muppet would be added to an online storybook — the character’s name is Julia and she has autism. Autism Speaks’ Director of Public Research, Michael Rosanoff, talked about how important this representation is to children with similar experiences as Julia, and others who might not share her experiences. He advocated, “The Sesame Street campaign is really helping them see that they’re not alone, and for kids that don’t have autism and their families, they are learning about what autism is and how kids with autism aren’t that dissimilar from themselves.” Julia is the first character on Sesame Street to have Autism.
This move was met with some questions and controversy. The day after Sesame Street’s announcement, Los Angeles Times editor and reporter Joy Resmovits, who typically covers education, responded to the announcement with the article “Why Sesame Street’s new character isn’t representative of most kids with autism.” Her argument — one that seemed somewhat valid — was that autism affects more males than females, and questioned why the first character with autism on Sesame Street would be female. She cites Centers for Disease Control and Prevention, which found that autism is five times as common in boys than girls (The rates appear to be about 1 in 42 boys against 1 in 189 girls who receive the diagnosis.)
Within Resmovits’ article, Sesame Street’s Executive Vice President of Global Impact and Philanthropy, Sherrie Westin, indicated she initially had questions about having Julia be female. In the end, her rationale turned out to be essentially the same as Resmovits, just looking at it from another perspective. Autism occurs less frequently in girls — that’s why representation is important. Westin explained, “We made sure she was a girl namely because autism is seen so much more often in boys. We wanted to make it clear that girls can be on the spectrum, too. We’re trying to eliminate misconceptions, and a lot of people think that only boys have autism.”
Westin also talks about how Sesame Street consulted with multiple Autism advocacy groups, such as Autism Speaks and the Autism Self-Advocacy Network, which have different perspectives. Their effort is reflective in Sesame Street’s additional advocacy campaigns, as seen on YouTube in a video called Sesame Street & Autism: See Amazing in All Children.The video explains in simple terms for children ages 2-5 that “lots of kids have autism and that just means their brains work a little differently.”
So, what has the public reaction been like? As of now (November, 2015), it’s still being gauged, although the majority of reviews seem positive. On November 5, 2015, the Atlantic’s Laura McKenna wrote that it has the potential to be a “novel and game-changing educational tool aimed at demystifying autism for preschool children,” and commends the show’s cast of characters (muppets, siblings and parents) who “explain autistic behaviors in ways that make sense to other children,” with the intent to “normalize” the disability. Likewise, Michael Robb, Director of Research for Common Sense Media, an organization that reviews children’s media, calls the addition “pretty groundbreaking,” elaborating that “it can be difficult to start a conversation about children with disabilities. It’s even harder when that difference isn’t visible.”
An article in Salon by John Donvan and Caren Zucker, who themselves are writing a book about the historical perception of autism and stories about people with the diagnosis, delivers more mixed reactions. They recognize that Julia only represents a portion of those with autism — those with seemingly less severe impairments. Still, they see hope that Julia’s presence will draw in awareness, conversations, and further de-stigmatize those with the disability.
When I sat down with Drexel Professor Nancy Raitano Lee from the Psychology Department to hear her thoughts on the matter, she seemed to agree with both camps. She calls the variety of individual differences in autism’s presentation “a very big spectrum,” having worked with children she describes as “very gifted” and also having worked with kids with intellectual disabilities who were mostly non-verbal. She noted the public’s misconceptions about autism: “There’s the assumption that if you have an IQ that is high, you have less difficulty, and that’s not always true. Some individuals I saw with high IQs really struggled, which affected their ability to mainstream in classrooms with other kids.” So not all people with autism who are high functioning look the same, (a point the critics Donvan and Zucker make.) Professor Lee noted this variation exists in individuals with autism who are lower functioning, too.
When she led a social skills group for young boys with both intellectual disability and autism, she described one of the boys in particular as quiet, not producing much conversational speech, but remembers him as a generally “agreeable fun kid to be around.” She said, “This just goes to show that you might know a few snippets about their symptoms but you don’t know what they’ll be like until you meet them…and that’s what’s the problem with the media. What presentation do they choose? How do they decide? Do things go well for characters when they interact with others in social situations, or not?”
As an aside — Professor Lee also pointed out The Curious Incident of the Dog in the Night-Time as an accurate literary representation of an individual living with autism, which has recently made its way to the Broadway stage, further raising awareness.
When asked for her outright opinion on Sesame Street’s depiction, Professor Lee said, “I think what Sesame Street is doing is noble but people will always ask, ‘well, why didn’t you do this?’ But overall, they’re raising acceptance and understanding.” She also noted that perhaps Sesame Street’s representation of a little girl with autism may spur more research in females, since much research has focused on their male counterparts. In the end, Professor Lee hoped the representation will draw attention to the strengths of people with autism, as Colorado State University professor and autism activist Temple Grandin highlighted in a 2010 Ted Talk called “The world needs all kinds of minds,” or as Washington reporter Eric Garcia did in a National Journal article entitled, I’m not broken, highlighting his strengths in American politics that can offset his deficits in social cues.
Indeed, the presentation of autism varies — across individuals, genders, and symptomatology, similar to the broad definition of “disability.” Though we may be making progress, we still struggle to represent disabilities, particularly when they are hidden — but when they are exposed, we see that representation truly matters.