By Caitlin Dawson
“As much as I see myself as a person with special needs, I definitely see that as part of who I am, not all of who I am.” Jake Anthony, an actor and performer who also goes by the name ‘Spotlight Jake’, is talking about his identity as a person with Asperger’s in a telephone interview with posAbilities Today. “The autism is part of me, but I don’t feel it’s all of me,” he affirms.
Approximately 15% of the world’s population, which is over one billion people, live with some form of disability. It’s not surprising, given the prevalence and the associated variation, that disability identity is highly fertile and contested terrain. The term ‘disabled’ covers an incredibly vast array of individuals and ability levels, yet the label risks homogenizing these diverse people into a singular group, condensing the rich tapestry of experience into one overarching identity.
The ‘disability’ label actually tells us very little about a person, and it is in this context that myths and stereotypes about persons with disabilities abound. Film has been dubbed the ‘supreme medium of mythmaking’ and many people’s first exposure to the notion of autism is on screen. “A lot of people tell me they don’t know I have autism because they’re expecting a Rain Man [kind of] thing. They’re expecting all the stereotypes of the disability … rocking back and forth and repeating things over again,” says Jake. He refers, of course, to the 1988 Oscar-winning film starring Dustin Hoffman as a man who is an autistic savant.
Although the film was highly acclaimed at the time of its release, our knowledge and understanding of autism has developed significantly during the intervening years. Yet Hoffman’s portrayal remains trapped in amber, promulgating the misleading idea that most autistic people are savants equipped with a mental calculator. I ask him what other assumptions he frequently challenges. “I think the biggest misunderstanding is that people with autism can’t connect,” he says. “We are capable of connecting. It’s difficult, but it’s not impossible … it just takes more work than for somebody without a disability.”
Jake’s last sentence, “it just takes more work than for somebody without a disability,” made me think. Why is the onus on the person with the disability to ‘work harder’? If we, as a society, really want to foster a culture of inclusion, surely the focus should be on changing society and empowering persons with disabilities and not vice versa. If that is the case—and I believe it is—what steps can we take towards achieving this new paradigm? “I think it’s a matter of taking a step back and seeing the human being, not going by a label or a stereotype,” says Jake. “I like to use the term ‘special needs’ instead of disability because it’s more positive. I always try to look at the abilities of other people, instead of the disabilities – to see that’s there’s more there, because there always is.”
John with his bowling trophy
When I interview John for this article, I tell him I’m interested in exploring his identity as a person who is deaf. We begin chatting, and the first topic we discuss is his recent work placement in the kitchen of a local elementary school, where he helped prepare meals and serve the children. He had just completed the placement the day before and missed it already, he said. It is clear that John gained a real sense of accomplishment from his work and he spoke enthusiastically about the supportive team and the friendly deaf and hearing impaired children, who signed their requests for food.
When we talk about DeafNation Expo, a touring expo for, by and about deaf people that John attended in Las Vegas, he tells me of his excitement to meet deaf people from every corner of the globe. A bowling aficionado—I spot a gold trophy he won for the sport some years ago displayed on the mantelpiece—John’s favourite memory was winning a tournament with his team. It becomes clear quite quickly that while deafness intersects with many areas of John’s life, it is just one component of his identity and experience.
John displaying his employment book
It may seem easier to create a dichotomy between ‘disabled’ and ‘neurotypical’ or ‘able-bodied’ people rather than to search for common ground. But highlighting difference focuses purely on how the person will integrate into society not how society can be more inclusive. As Andrew Masondo from the African national congress stated, “Understand the differences; act on the commonalities.” So, what is the key to finding these commonalities? For John, it all goes back to basic kindness and patience. “If I meet a nice, friendly hearing person … on the SkyTrain, I can teach her ‘good morning’ [in American Sign Language]. We can chat to each other a little bit. I notice when people are nice – I can break the ice, catch their eye with a smile, write something down … Friendliness and willingness to make an effort with each other; that’s what I appreciate.”
For Jake, an inclusive society comes about with the help of an open mind. “I find that the people who understand who I am and understand my disability do so because they’re looking beyond the basic behaviours and challenges. [They’re looking at] a person not as disabled or incomplete or lower functioning, but as a human being,” he says. “We still have the same feelings and dreams and goals. The disability is a part of the person, but it’s not who we are.”
Jake asserts that he does not eschew his Asperger’s diagnosis, nor deny the challenges he experiences as a result. “Asperger’s can make it difficult for me to communicate my feelings. Sometimes I can find it difficult to understand my own emotions, let alone the emotions of other people.” But, he says, these challenges apply to people of all abilities not just those with ASD. “We all have our disabilities; things we wish we were better at that we need to work on.” With this statement, Jake highlights an important question. Namely, who decides who has a disability? There is sometimes an elusive and relativistic boundary between being ‘impaired’ and being ‘neurotypical’ or ‘able-bodied’. Rather than the basis of difference that sets someone apart, impairment could be seen as part of the human condition. I may be able-bodied today, but who can say what the future holds?
To really become an inclusive society, I believe we must resist the human tendency to categorize and segregate, which can lead to over-simplification of complex issues and the erroneous limitations of people’s abilities. Black and white thinking – ‘health’ versus ‘impairment’, ‘normal’ versus ‘deviant’ – negates the shades of grey that make up the palette of human experience. To have a disability does not diminish one’s humanness; it is part of one’s humanness. And while it can be legitimized as a part of life, it should not be the central focus of a person’s identity.
