Ripples That Create Awareness

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The first time I came across a person with Down’s Syndrome, I don’t remember exactly how old I was at the time but know it was the tween years as it was at that time in life when being under my Maa’s constant reproving glare, I had lost my precocious disregard for keeping my tongue still and had not yet stepped into my obnoxious teen years when I overcame that glare again. What I do remember of that occasion is a deep sense of shame and an overwhelming guilt. The reason for this is that I completely screwed up.

How? The individual was my mother’s cousin visiting my maternal grandmother’s house with his parents. Well I looked at him with great discomfort and then throughout their visit just ignored his presence. Naturally a curious person though, I kept stealing surreptitious glances at him. I watched how he ate, drank his tea and how he sat calmly between his parents not participating in the conversation and how the adults in the room did not address him in any manner at all. He smiled when the others laughed, his eyes darted around taking in everyone, everything. He caught me a few times in my act of furtive curiosity beaming at me every time. In my clumsy tween ignorance, I gave a half smile averting my gaze yet again. But, what I will never forget of that face was his eyes. Completely guileless. Completely innocent. Completely honest. Seeking nothing.

Now why did I not behave better?

Was it because I was not taught to?

Or was it because these conversations were uncomfortable?

Or was it because when we turn a blind eye to something it ceases to exist for us?

Or was it because the sense of inclusion was meant only for the supposedly ‘normal’?

That brings me to my next question. What is normal?

To answer this I looked up the dictionary first to ensure that I did not make any errors. What I found led me to some very interesting ideas. Let me share these with the various meanings that Dictionary.com threw up.

Meaning No 1 for normal: conforming to the standard or the common type; usual; not abnormal; regular; natural. Well since, I do not consider ever conforming to the standard or the common type I am not normal. I detest the usual, the regular as too humdrum so I am certifiably abnormal. As for the natural! Well with coloured hair (some of it even ombre) certainly not qualifying for normal.

Meaning No 2 for normal: serving to establish a standard. How interesting!  If I were to go by the behaviour of the other grownups in the room to the said relative as serving to establish a standard, it’s a pretty miserable one. I do not want to serve to establish any such standard.

Meaning No 3 for normal: Psychology, says the Dic, normal is approximately average in any psychological trait, as intelligence, personality, or emotional adjustment. Now how many of us are going to accept that we are approximately average in any way, so are we all then as the venerable Dic, further explains not free from any mental disorder; therefore sane?

Meaning No 4 for normal: In Biological, Medicinal/Medical terms normal is free from any infection or other form of disease or malformation, or from experimental therapy or manipulation. Hello! With a twist to the wise Prophet of Nazareth’s words “let the first stone be thrown by the normal person.” How many of us can then with certainty claim to be untarred by the brush of fallibility?

So hence my conclusion, Normal does not apply to me. Maybe you feel the same. Maybe you don’t.

There are other meanings for the word ‘normal’ that relate to Mathematics and Chemistry but are hardly relevant to the discussion at hand so I shall not delve there. Also, I feel I have made my point (at least I hope I have) that ‘normal’ ain’t all that special.

So how did I learn to behave better?

That evening I asked my mother, when her relatives had left, what was ‘wrong’ with the uncle. She has always been a woman of gumption and did not sweep my inquisitiveness under the rug as an uncomfortable topic that if not talked about would be soon forgotten. She explained the problem to me in her usual scientific way with a huge smattering of pity in her tone. Pity. As parents, we find ourselves often transferring our biases to our children to protect them from the difficult questions of life. That day my mother transferred pity to mine. Pity. This was a feeling that would repeatedly walk with me as I grew up, crossing paths with more people who were what society terms as different. I honestly think that I got off lucky, pity was an easy bias to overcome. What if she had felt revulsion, disgust or repugnance?  So, let us be careful which bias we are passing on to our children. Once I had rejected the idea of pity my next thought was: Why should we consider them and their caregivers with pity? Isn’t that how we create victims and martyrs. Is that the aim? Over the years having interacted with several people with disabilities and their families there is one thing that I have learned, that ‘pity’ is abhorrent to them.

Then what is it that they want from us?

When I was in school we did not have any child with any kind of developmental disability. There was never any mention of it. It was as if these things did not exist. Nobody at home spoke about it as there was no need for such a discussion. What we didn’t know we did not ask. I do not offer this as an excuse for my behavior in fact on the contrary my reactions on that day were and remain inexcusable. What I offer is a contrast. My kids have had the privilege of studying in schools where inclusion of the differently abled is essential. Thus, I have two beautiful souls who are full of compassion and have never behaved in a manner that would embarrass them later in life as a result resort to writing blogs such as this. My children talk of the wondrous capabilities of their friends and I share their wonder for their friends truly are amazing. What I find most heartening is that my kids talk about these friends with deep affection. Respect and affection that is created by accepting diversity is the beauty of inclusive classroom. Special education professional Gretchen Walsh M.S. Ed., who runs the Academic Support Center at Notre Dame College, gives a concise synopsis when she says “Inclusion is important because through our diversity we certainly add to our creativity. If you don’t have a diverse classroom or a diverse world, you don’t have the same creative levels and I think our strength lies in our diversity.”

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Friendship, love, respect, dignity is that too much to ask? Aren’t these basic human rights? A civilized society is one which is morally and intellectually advanced; that is humane and ethical. Diversity is finding acceptance in the classrooms, our children are moving towards a far better civilization, let us join them walking proudly shoulder to shoulder with them.

What can we do?

Down Syndrome

Solidarity is the union or fellowship arising from common responsibilities and interests, that is what the world needs today in all spheres but especially here. When individuals come together to celebrate the rights of the few with Disruptive Abilities heartening stories are born. On the 21st of March the world celebrates World Down Syndrome Awareness Day, it is a day simply for creating awareness. This year in India under National Trust and  IN:For the Cause there were many beautiful stories born. Blue and yellow symbolizing the colors of this very special day emblazoned vistas.17362013_10101577993744884_358703351333889271_n

Names like Google, Microsoft, Nokia,  MED-EL,Harley Davidson, ITC Maurya, Lemon Tree, Forever Mark Diamond Pvt. Ltd., TATA CliQ, We Media Works, Chill Bey, C’est La Vie, Styling Scissors, Madison & Pike, The Social Street, Hotel Red Fox and even a filling station  BP came forward in support blazing the way for their people to pick up the torch to carry the dream into the hearts of hundreds. School children from  Scottish High International School, and from  The Close South, a condominium in Gurgaon, fashioned masterpieces with the two colors winning the joys of many. College students stepped up through the Blue Pencil Blog creating a platform to better understand the chromosomally enhanced who enhance the lives of each one they touch with their beautiful hearts that abound with pure happiness.

Siblings shared journeys of their lives with their very best brothers and sisters.  Parents smiled at their progeny who were successful in every way that society deemed them incapable of. Organisations like MUSKAAN that provide opportunities to the differently abled shared their immense capabilities.   Numerous empathetic individuals also stepped up, ripples are spreading far and wide. Hope has been created. The horizon of many found expansion and the diligent efforts of the organizers were realized.

The busy organizers now work even harder for the next date 2nd of April for World Autism Day. So how about it, will you also join in the efforts to create a better tomorrow?

 

 

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