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Why My Cousin With Down Syndrome Deserves To Be Defined Beyond The “Special” Label

 August 13, 2015 | By Christopher Dee

 

“Le Fou, Le Fou!” my cousin John calls out. Some days I’m the grovelling Le Fou from Beauty and the Beast. Some days, I’m the valiant Captain Von Trapp from The Sound of Music.

Ever since we were young, John called each member of the family by the name of a Disney character. One of his many idiosyncrasies, this habit fit right in with my bug collection and another cousin’s stutter.

When I was growing up, I had no real concept of the term “special” as it was applied to John. Only later did I realize what Down syndrome was, the effect of a chromosome in triplicate. As I grew older, and as society made this apparent, the term “special” came to connote “other” and “different“.

A childhood photo of Christopher with his cousins, including John.

Don’t get me wrong – his parents are exemplars in caring for a son with Down’s. They laughed with him, more than reprimanding him, when he prank ordered three birthday cakes to a friend’s home. Instead of letting the next condescendingly patient smile get to them, they sent him to a mainstream school, and then switched to a private tutor to specialize his education. They indulge his love for theatre and music. They allowed John to demonstrate his capabilities without allowing him to be limited by a clinical definition. In short, they worked against the idea of “other“.

The label of “other” is a dangerous one. It incurs assumptions that limit opportunities and influence interactions. Sadly, it is pervasive especially for individuals with special needs. But what if these features are viewed as just another trait, along with eye colour and height? Perhaps, then, these kids will not be defined by their needs but, as is expected by all of us, by personality and heart.

Erasing the label requires openness in our definition of what contribution to society is. Much of the world sees productivity when it translates into money, with income as the universal measure of worth. Looking instead holistically, at the intrinsic capabilities of each person to do good, will facilitate the contributions each person has the potential to make. Ultimately this translates into a more fruitful society overall.

Because of John, his parents are leaders among groups for families of kids with Down’s. Thanks to him, people who know him associate Down’s with a happy face and sharp humour rather than an incapacitated individual. Even his personification of us as Disney characters influences those around him: the nicknames that many would interpret as babble are often poignant observations on human nature that help each of us self-examine through his often-satirical lens. Surely these contributions to society should be worth more than the average paycheck.

There is enough evidence that an intellectual or physical disability does not prevent someone from contributing to society. Scholars say that Vincent Van Gogh was schizophrenic; perhaps this helped him redefine the interplay of colour and light. Doctors did not think Stephen Hawking would live past his mid-twenties, but today, at over seventy, he continues to make great strides in theoretical physics. Temple Grandin, who was diagnosed with autism at age two, has revolutionized the cattle ranching industry and is a university professor. Conditions that much of the world sees as prohibitive of a full human experience do not have to be confined to that.

If the label of “other” were used in the singling-out of someone who is different, then each of us would fall into that “other” category. If the basis of the label were difference, then ultimately each stands alone. In a world where cooperation is key for anything to progress, then enforced otherness, societal solitude, is not the way to go.

My cousin deserves to be defined beyond the label – and indeed in many ways he breaks the stereotypes of Down’s kids. His personality is his own, not constrained to Down’s but made unique by it.

The challenge for everyone is to see that in being different, in being diverse, we find our strengths. In combatting labels, people like my cousin John are allowed to share with the world every ounce of good they can give. Accepting individuals as part of the spectrum of the human condition, each with the full potential to contribute to the world, is key. Perhaps, then, unity in this diversity is what allows each of us to be uniquely special.

About the author: Christopher volunteers at the Amrit Foundation of India and is a recent graduate in molecular biophysics and biochemistry from Yale University. He is interested in negotiating the junction between medicine and global health as a means of bringing care to those marginalized by society. As a Filipino-Canadian, Chris is interning in India to gain insight into solutions to health problems of the developing world.

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