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By Maggie Heffernan
Recently at a sports event, a friend approached me to share how excited he was to meet my brother. “Your younger brother—he is just so cute,” he gushed, gesturing towards the seat where my brother was sitting. I feigned a smile and nodded at him, pretending to match his enthusiasm as he proceeded to talk about the “benefits of people with disabilities” and how profoundly his son had been affected by meeting someone with autism the other day. Besides the fact that my brother is three years older than I am, there is something else wrong with my friend’s statement: my brother is not “cute”—he’s a badass.
Brian, now 25, was my parents’ first of three children. Realizing after not too much research that the public schools in Boston were not going to cut it for their son with special needs, our parents decided to move to Newton, a nearby suburb renown for its special education programs. And, since moving to Newton, Brian has taken and enjoyed mainstreamed classes, graduated with a high school diploma, and passed all Massachusetts standardized testing, a feat not common for individuals with Down syndrome due to the cognitive and fine motor skills needed to complete the tests within the given time constraints. Oh, and he works at the State House now, a platform he frequently utilizes to advocate for disability rights.
“I’m smart, popular, a geek, and a diva,” he stated recently during a speech at a local elementary school when asked what four words he would use to describe himself. Needless to say, “cute” is not the first word that jumps to mind when I think of my older brother. Yet my friend’s comment is not unique: individuals with Down syndrome have long been portrayed and discussed in popular culture as embodiments of cuteness.
As disability studies scholar Rosemarie Garland-Thomson writes, there exist four visual rhetorics of disability: the wondrous, the sentimental, the exotic, and the realistic. Each of these ways of viewing people with disabilities invokes a different response in the viewer, as well as influences the behavior and actions of the viewer. And, according to Garland-Thompson, all representations of disability “either inadvertently or deliberately summon these visual rhetorics and their accompanying cultural narratives.”
For people with Down syndrome, the go-to visual rhetoric is “the sentimental.” People with Down syndrome are often described and depicted as being incredibly loving, perpetually gleeful, and “angelic.” Though these descriptions fit some people with Down syndrome, they by no means encompass them all. And deducing the persona of any individual to an object of sentimental cuteness is not just infantilizing—it is dehumanizing.
The Down syndrome community often plays a role in this perception as well. Awareness campaigns and organizations targeted towards families and friends of individuals with Down syndrome are often effusively positive, coated with exclamatory phrases such as “Believe!” or “Never give up!” On World Down Syndrome Day in 2014, a video montage of individuals with Down syndrome dancing to Pharrell’s upbeat “Happy” was released, producing myriad smiles and reactions of awe in its viewers.
These messages are important because there are people who believe Down syndrome is a condition to be lamented. And these messages are, to an extent, necessary, because there are also anxious parents who do not know how to adapt to having a child with special needs. Indeed, not too long ago, individuals who were born with Down syndrome were routinely institutionalized. Society therefore neither saw nor interacted with this demographic much at all, and were left to make up their own, fragmented and ignorant conclusions about what these types of people must be like. After all, projecting inspirational, hopeful depictions of people with Down syndrome is much better than shutting them off from society entirely.
Yet we can do better. As David Perry, whose son has Down syndrome, wrote in an article last year, “Happy lives are good, but is happy enough? What about inclusion, support, jobs, education, accessibility? How do we get past the low-hanging fruit of happy to do the hard work that our community needs?”
In order to begin to change the rhetoric and popular conception of individuals with Down syndrome to include more than just “cuteness” or perpetual happiness, we must ensure that individuals with Down syndrome of all abilities, personalities, and ages are represented in the media. Actor Chris Burke, who is most known for his role on the sitcom Life Goes On, is a great example of an individual with Down syndrome whose media presence revolves around his talent rather than the sentimentality he invokes. Now 50 years old and past his acting prime, Burke continues to perform in smaller roles as well as appear as a guest on television talk shows. As he said during a 2014 interview with Oprah, his acting is not about “performing disabilities—it’s about performing abilities.”
In Brian’s speeches about self-advocacy and political reform for individuals with special needs, he is unfailingly witty, incredibly articulate, and enthusiastic to share his own story. His knowledge of current events, American history, and literary works shines through during conversations with him, in which he is never shy about sharing his opinion.
“Well, 18 is the age when debutantes usually come out to society,” Brian recently remarked to my mom, calling upon his Downton Abbey expertise in thinking about a young female character in Charles Dickens’ Our Mutual Friend.
The demand for his presentations at both local elementary schools and renowned universities is high, and it is his individual accomplishments and distinct persona that generate awe. And it is my hope that when Brian becomes an old man—perhaps with less charm, perhaps with the beginnings of Alzhemier’s, perhaps with less youthful appeal—that he will continue to speak.
Of course he will. Because he is a badass and because it is what he loves.
Maggie Heffernan is a recent graduate of Haverford College, where she majored in English and served as the editor in chief of its student-run newspaper, The Clerk. Her older brother Brian has Down syndrome, a fact that has influenced much of her thinking, writing, and the way in which she navigates the world. For the past ten years, she has worked at Camp Echo Bridge, a day camp for individuals with a variety of special needs, and she regularly volunteers for Athletes Unlimited, a non-profit that provides fitness programs, summer camps and sports leagues to children and adults with disabilities in the Greater Boston area.