Originally named after the English doctor John Langdon Down, Down’s syndrome now known as Down Syndrome or DS or DNS is a medical condition wherein there’s a presence of an extra chromosome in a baby’s cell. Instead of two copies of chromosome 21 there are three. It is typically associated with stunted physical growth and intellectual capabilities and characteristic facial features, in varying degrees from person to person.
However, there’s no saying that people with DS can’t live a normal life and be involved in regular work and day-to-day activities. Although there’s no cure for DS but with proper education and periodic life long therapy, there can be a considerable improvement in the quality of life. In most cases, children with Down’s are educated in regular schools, graduate high school and attend college, with a few exceptions where specialized schooling and education may be needed.
There’s no saying that people with Down’s can’t be integrated into the society as any other “normal” person ’cause they to are just as normal and equally talented and imaginative as just another regular high school “jock” and that’s exactly what I’ve tried to show in the story “Up with Down’s!” from my first fiction novel Transcending Parallels.
I’m no expert on the condition or have done extensive research on this sensitive topic and my understanding is just as good as those reading this post or anybody else’s… or at least it was till I tried to probe a little further into it and opened a few web pages on the net which were just a few clicks away.
But what piqued my interest into this rare condition was the portrayal of the character Rebecca “Becky” Faye Jackson from the American, hit musical series Glee. Becky played by Lauren Elizabeth Potter, is a feisty, impish at the same a very endearing character who is the tyrannical and vindictive coach Sue Sylvester’s minion; one of her henchmen and trusted confidants as she terrorizes the whole school and has made it her life’s goal to shut down the Glee club and rid William McKinley High school of the only musical club that has become a sanctuary of sorts for the marginalized and the social outcast.
Be it a bullied gay or a closeted high school jock who bullies others to over compensate his sexual identity crisis, a guy on wheel chair who endured a spinal cord injury in car crash at the age of eight, the socially awkward or the most popular reeling under a superiority complex and every other high school “freak” finds acceptance in the Glee club.
Beck is a high school kid with Down’s and is also the captain of coach Sue’s Cheerios, the cheer leading club. There has been a seamless integration of her and every other character in the show that may be regarded as not “normal” as per askew societal norms. And it was this show that was an eye opener for me and made me realize that even kids with Down’s just as capable and imaginative as any other kid. Apart from a few traits like distinguished facial features, a little speech impairment with difficulties in forming sentences and speaking, which can be dealt with speech therapy… these kids are just as normal and creative and adopt exceptional social interactive skills with age as they tend to be more expressive with their gestures and facial expressions.
Glee has been revolutionary in breaking many social and gender stereotypes and showcasing the marginalized in less than a conventional and caricaturish manner. It was Becky’s character that inspired me and gave me the confidence to create “Arsh” the star of the story Up with Down’s! from my book Transcending Parallels.
Up with Down’s is a heartfelt story of an eight year old boy named Arsh. This story is an attempt to celebrate the life and zest of a young boy, let down by circumstances, but remains upbeat about life as he wades through it; smiling in the face of adversities. And the one person making sure the smile stays on his little face is his discerning mother Aseema.
The story is an attempt to show the that those affected by the Down’s syndrome aren’t any different from you and I and that their world is just as normal as ours. They are no less creative and give the same opportunities and a limitless sky for their imagination to take flight, they too can conquer the world, perhaps making it a better place for us “normal” folks!
At one point in the story, Arsh along with his mother Aseema recites this poem in Hindi, which is translated in English here and in the book as well. It is a heartfelt rendition of a poem composed by Aseema for her son that finds resonance in the hearts and minds of those sitting in the audience and perhaps those reading it here.
Read the book Transcending Parallels to know more about the story and its real and relatable characters including the very adorable and impish character with a devilish glint in his eyes and a smirk on his face, but with the heart of an angel, Arsh.
If you wish to have a look at my first fiction novel Transcending Parallels, it’s available internationally on amazon and on sites like flipkart, book adda and infibeam in india in paperback, e-book and kindle versions or you can follow one of the links below.