If you asked 31-year-old Melissa Ngo what her fondest childhood memory of her brother is, she’d respond with scraped knees and two scooters.
While roaring down a hill at full speed, the duo hit a patch of gravel that sent them flying off their rides. Instantly, a young Melissa went into protective mode, fretting that she had hurt her brother. Scott, on the other hand, burst into laughter and couldn’t stop.
Melissa laughs, too, as she remembers it—not only because it’s such a stark representation of both their personalities, but also because that moment helped her realize two things: while she would always feel a responsibility akin to that of a third parent, she was, first and foremost, Scott’s sister.
Growing up, Melissa and Scott spent much of their time doing things together: running, hiking and swimming. They were a portrait of two siblings who got along, with the exception of minor fights revolving around non-issues such as who took the last piece of gum.
What most people wouldn’t realize right away is that Scott, now 29 years old, is on the autism spectrum, a diagnosis he received at age two. Because of this, he communicates nonverbally with the people around him. Scott has given his sister permission to talk about his diagnosis and story.
According to Melissa, Scott has spent most of his life using alternative means to communicate. Over the years, with the help of speech pathology sessions, he progressed from using pictures to a clunky device with speakers. Now, thanks to technological advancements, he communicates via an app on his iPad called Proloquo2Go.
It’s a huge improvement from the days when affordable, advanced communication tools and speech technologies were not available to a young Scott.
“When we first realized he was experiencing headaches, when he was younger, he didn’t have the vocabulary or the tech to express through writing what he was upset about,” says Melissa. “It was heartbreaking because we were constantly trying to figure out where his pain came from.”
As the first-born, Melissa often felt a strong sense of responsibility toward her younger brother, spending her school days even at the age of 11 advocating for and keeping a close eye on Scott.
“Facing discrimination comes along with being a sister of somebody with a disability. I would worry all the time that other people might bully him or not understand what it’s like to have a disability,” she says.
This lack of understanding in Scott’s peers and schoolmates was one of many barriers that he and his family had to face. And the lack of representation in pop culture didn’t help matters either.
Having grown up in a family unit that was not only Asian but that also had a member with a disability, Melissa says it was rare then—and still is now—to see accurate and intersectional representation on a screen.
“Never have I seen a family on television or in the movies that looks like my family,” she says. “That’s just not something that was historically represented in North America in general. To put somebody with a disability on TV or in the movies is so rare. But it’s also so needed because our families don’t see ourselves reflected.”
For Melissa and Scott, when it came to the representation of disability in the media, the only sources they could draw on in the ’80s and ’90s were Rain Man and Forrest Gump. The latter remains Scott’s favourite movie. When asked why, he answers, “Forrest is happy.”
Scott, using his app, describes his memories of the film as “running, sitting on the bench, dinner, swimming, man, boy.” When Melissa thinks about the relationship between representation and Scott’s answers, she thinks that Forrest Gump may have been the only thing that was relatable, onscreen, to Scott when he was a kid.
But she does add that it’s a movie, like Rain Man, in which the titular character is portrayed by an actor who doesn’t have a disability, which is very common and still happening to this day—something she finds completely problematic.
“There are people who are part of the disability community and who love acting, writing, directing and producing. Why are we not giving people with disabilities the chance to be involved in movies or TV shows?”
Similarly, representations of people with disabilities, when they do occur, are often based on stereotypes and tropes.
“A common narrative in television and movies is that people with disabilities are burdens to their families or are people who cause tension and problems within their families,” she says. “Why can’t we see a relationship where the siblings are happy together? Why can’t people with disabilities be in the spotlight and just be?”
This is why campaigns like Holland Bloorview Kids Rehabilitation Hospital’s Dear Everybody are imperative and dear to Melissa’s heart.
Scott was a client at the hospital, and now, years later, Melissa works there as a family support specialist, making it her duty to help families—including siblings—navigate the various barriers and transitions they face when caring for a person with a disability.
She credits campaigns like Dear Everybody for helping push the boundaries of disability stigma beyond Holland Bloorview’s walls.
Dear Everybody is a national public awareness campaign, built on the shared experiences and stories of children and youth with disabilities, that focuses on challenging and breaking down disability stigma and stereotypes. Now in its third year, the campaign is encouraging companies and brands to start including people with disabilities in their advertisements and campaigns using realistic storylines.
Twenty-two per cent of Canada’s population lives with a disability, and it’s high time this demographic was reflected in movies, advertisements and on TV.
“I like that we’re asking people and brands to be accountable and to make an effort toward this. I really hope that it changes the system in a different way,” Melissa says. “I hope that—because of the work of [Dear Everybody], along with the many disability activists, advocates, allies and organizations out there— this shows that we need to take social justice, equity and representation seriously. And I think it’s long overdue.”
Visit deareverybody.ca and sign the Dear Everybody Agreement to help create a world without stigma.