It is not for Down syndrome but for whom we love – children, family, friends, colleagues, fellow travellers in the human race
Yes, ONE VOICE is about Down syndrome but it is NOT for Down syndrome. It is FOR and WITH the individuals who happen to have an extra chromosome and their families. Having an extra chromosome means you come out a little different, just like you have different coloured hair or skin because our genes are different. Having an extra chromosome doesn’t make you disabled. It is society and the lack of collective understanding and maturity that had created this notion of disability. Disability is a mental construct. It is a box that one builds when one is unable to process the whole flux and bittersweet of life. It is a sad box to toss the best of life into just because one is unable to comprehend the purpose of the bittersweet of life in our growth process as human beings and collective humanity.
You see, I kept struggling with “Down syndrome”. Down syndrome is my inner battle. I didn’t want to talk about it – I didn’t want to feed it to become a bigger monster. I didn’t want to give it an identity. But every time I explored the subject, it had to be named. And then I learnt something. Right here, right now, I cut it down. I cut away the power of Down syndrome. It is by looking at Down syndrome squarely in the eye that one can cut down this fear that had for far too long taken an unmoral grip on our humanity.
Down syndrome is not our children, not our fellow human beings. Down syndrome is our theoretical construct about something we don’t understand. Well, now I understand Down syndrome. It is simply a bogeyman. A patch of darkness next to every expectant parent’s cradle of hope that we had somehow let enter into our eyes and worse, we had let it envelope our precious children in the darkness and shroud of non-existence. How did we allow this fear to get so big?
Will You Sing For Whom You Love?
Well, let’s sing it away. Let’s get right into the seeming darkness and shine the light through and sing to boo away our collective bogeyman.
As a mother and as a member of the human race, it is my MORAL DUTY to work towards a deeper and kinder humanity. I couldn’t dream of doing anything else. Nor would I want to. And that journey is none other than to confront our mortality, our vulnerabilities as a human race, individually and collectively, and to begin to live each day with a new sense of adventure. Because without adventure, it is simply not possible to walk through, to, and be at the deepest heights of humanity: “Further up and further in,” beckons C.S. Lewis in The Chronicles of Narnia.
Because with adventure, we discover. The best of being human.
WILL YOU SING WITH ME?
ONE VOICE:Another Buddy Walk of Sorts
September 24, 2011