Weekly Photo Challenge – “Lost in Details” – Finding My ‘Special’ Shine –

Today I had an incredible experience!

Past few weeks I’ve being going through life on auto mode. I wake, I work, I eat, I work some more and at the end of the day I sleep. I usually like to go through life full force, cramming as much as I can into every second. Friends, family, work, play, writing….. But lately, everything seemed to have lost its sheen. I still continued to go through the motions but the spark went missing.

And then Today I found it again! In the most unexpected way.

A social service club I am a part of had an event in a school for the mentally challenged. I agreed (not very enthusiastically! I may add) to go along. The school a small one with only 25 children was housed in a single room building. There was a neat well-kept garden outside. The head teacher received us warmly and introduced us to the children and their parents.

Whenever I meet the parents of a special child, I am at a loss for words. I know it’s fashionable to say stuff like “Oh they are such a blessing” or “They are so special” (Which they undoubtedly are!) But in today’s time when everyone is so besotted with perfection- perfect scores, perfect looks, perfect children… I can’t help thinking “Yes! They are special. But where is the space for them?”

Back in the times when we still lived in villages, and aspirations were simpler. At least there was more acceptance of these children. Their lives were not much different from those of the ‘normal’ children. Like all other children they too loitered in the fields, played make-believe games, stole mangoes and tamarind and watched the world go by. Agriculture was the main stay and as adults most of these children could be gainfully employed on the family fields. But in today’s hectic city lives, the gap between them and the ‘normal’ has increased. In today’s times of “Little Champs” and “Young maestros”, the divide between ‘normal’ and ‘special’ has become vast. The mechanized, office based livelihoods available in our cities today, don’t have much room for their ‘special-ness’. And every time I have spoken to the parent of a ‘special’ child I have heard the same fear. “What will happen to my child after I am gone?” Who will look after her/him? Who will take care of him? How will he survive?

In a country like India. Where 70 percent people still live below the poverty line. Where the state machinery has failed to deliver meaningful education and basic health facilities to even its ‘normal’ citizens. What hope of a secure future do these children have?

I remember well the first case I was assigned as a student social worker with a school for physically and mentally challenged children (That’s what they were called then!) in Bombay. I was asked to visit an ‘uncooperative’ mother. I was told “she doesn’t take the child to the therapist for appointments.” When I reached her home – a small cramped hut located in the middle of a filthy slum near Bandra. The lady was making chapatis on a kerosene stove, two young almost naked children stood next to her and a baby hung by her breast. Needless to say, I didn’t end up delivering my reprimand. She gratefully accepted my offer to take the child for her appointments. “It’s not that I don’t want to take her didi but it takes up the whole day and I have to go to work too.” she said.

A child with special needs requires additional resources. Besides financial resources, these children also require more supervision, time and patience. Unfortunately a great number of these children are born in families that don’t have enough to fulfill even the basic necessities. The already limited resources of these families are severely stretched by the presence of a ‘special’ child. These families need and should be provided adequate financial, psychological and emotional support.

The Indian government does support establishing and running of ‘special’ schools. But the number of these schools is grossly inadequate. Many of them are not properly equipped to provide the various therapies these children require. And there is also the fear that confining these children to ‘special’ schools may reduce their interaction with ‘normal’ children and cause social exclusion. The focus thus, even in ‘special’ schools is on ‘mainstreaming’. By mainstreaming they mean pulling these children out of ‘special’ schools and absorbing them in regular schools. I don’t deny the need to mainstream and yet each time I approached a school for mainstreaming these children. I felt like I was abandoning them. Very few schools have ramp access or toilets to accommodate wheel chairs. Children, even teachers were not sensitized towards these children. Often calling them names and staring rudely. It’s no wonder that the children themselves never looked forward to being mainstreamed. Mainstreaming was just another word for ‘adjusting’ . Adjusting, to a world that was designed to exclude them.

I have always felt that the solution may lie in the attitude. If for instance instead of focusing on ‘mainstreaming the children we begin to focus on ‘specialising the schools’. We start to equip our ‘normal’ schools with facilities needed for ‘special’ children, both infra structural and attitudinal. As the schools adapt we can declare them as ‘regular schools with specialized facilities’. A special child crosses over many internal barriers to reach a normal school. The least we can do is ensure that when they do reach there they are welcomed with open arms.

I remember a conversation I once had with a young physically challenged man. He couldn’t walk and had to use a wheelchair to get around. He belonged to a well to do family and his parents managed to get him educated in the best of institutions in India. But he said that the first time he felt truly ‘accepted’ was when he went to an American university to pursue his Post Graduation studies. The university had researched on his particular kind of disability and modified his assigned accommodation according to his needs without any instructions to do so, even before he reached. His eyes filled with tears when he said “For the first time in my life I felt able not disabled”.

Our entire educational system is designed for the average, The average child is who we are concerned about. But an average child is a mathematical myth. An average child doesn’t really exist. Each child is unique. In our quest to treat all children as same we beat out their uniqueness till they fit into our pigeon-hole of the ‘average child’.

But I am digressing. As I am prone to doing each time I reflect upon the state of our children and our educational system. The post was about regaining my lost fervor. And that’s what I wish to share with you.

So here we were, six well turned out ladies from a social welfare group. After, dropping our ‘normal’ children in city’s most expensive schools. We had come here to meet these children and their parents, most of them from poor economic backgrounds. Most of these children were mentally challenged, many suffering from border line retardation. Quite a few of them had an odd gait, held their head in an unusual tilt. A few of them could not walk without support. The principal informed us as we reached that the children had prepared a cultural program for us.

When we walked in, we were surrounded by bright eyes and happy smiles. The children were dressed gaily. There was a buzz in the air as CDs were collected and mikes were set up. Cheerful banter was being exchanged. Mothers fussed over their wards as proud dads clicked pictures. When the program began, we were struck by the pure joy that these children brought to their performances. There was none of the self-consciousness that one associates with stage programs among normal children. The steps didn’t matter, there was no obsession over coordination or ‘getting it right’. Unchained by the expectations to be ‘perfect’ these children danced with abandon. They danced for themselves. And in doing so they made the experience memorable for us.

No matter how hard their life is there is a beauty in it. That one can’t help admiring. Their lack of ambition and self-consciousness makes one wistful, almost envious. Their innocence and ability to derive joy in the smallest of things makes one look around at the world with renewed wonder. Their unabashed joy rubs off on everyone, even my world-weary soul. And I find myself smiling. The world no matter how selfish and brutal is still a wonderful place. I find myself thinking “The key lies in not getting lost in the details of living. Instead we need to just slow down and enjoy the ride”

At the end of the program, we hand out the prizes. The children beam, the parents look on proudly. The warm glow I feel in my heart brightens me from inside adding sheen to my every thought. As I leave there is a spring in my step and I get the feeling that I received the biggest prize of all!!

Other posts on this week’s challenge

19 Comments Add yours

Laura Bloomsbury says:

March 3, 2013 at 6:25 am:03

there is a freedom in being ‘outside’ but exclusion is not the same thing. Very touching story and one that illuminates the challenge this week.

1. justanotherwakeupcall says:
  
  March 3, 2013 at 6:25 pm:03
  
  love the way you put it. “Freedom in being outside but exclusion is not the same thing” . Gives me something to mull about 🙂 thankyou
  
kcaptain77 says:

March 3, 2013 at 6:25 pm:03

Do you have any pictures from that day. I would love to see the smiles on the special childrens faces. This was a wonderful and inspiring post. I applaud your efforts to make the best use of your time. This write was a perfect use of your time muse.
Peace! Ken

1. justanotherwakeupcall says:
  
  March 3, 2013 at 6:25 pm:03
  
  I do actually. A few videos. Will take help from the hubby and upload them. Maybe tomorrow 🙂
  
Anonymous says:

March 3, 2013 at 6:25 pm:03

Really nice one…we are all wanting to be so perfect in our lives ….lives of these special people is so necouraging

1. justanotherwakeupcall says:
  
  March 3, 2013 at 6:25 pm:03
  
  Dear someone, their livs are encouraging indeed. Thanks for stopping by
  
Travel Spirit says:

March 3, 2013 at 6:25 pm:03

That was very “special”!

1. justanotherwakeupcall says:
  
  March 3, 2013 at 6:25 pm:03
  
  It was travel spirit. Thank you for stopping by
  
la chica de la burbuja says:

March 3, 2013 at 6:25 pm:03

nicely written

1. justanotherwakeupcall says:
  
  March 3, 2013 at 6:25 pm:03
  
  thank you 🙂
  
amira says:

March 3, 2013 at 6:25 pm:03

Was wondering what you were upto. Missed your thoughtful stories.
Glad the ‘special’ children and their cause brought the shine on you.
It’s a sorry state to be on auto mode. But I guess we sometimes need the auto mode.
keep sharing your shine with us.

1. justanotherwakeupcall says:
  
  March 4, 2013 at 6:25 am:03
  
  You are right, Amira one does need the auto mode. Its like a necessary evil. It serves a purpose. I missed everyone too.
  
Madhu says:

March 3, 2013 at 6:25 pm:03

Touching and thought provoking Sapna. These moments make one step back and reassess priorities.

1. justanotherwakeupcall says:
  
  March 4, 2013 at 6:25 am:03
  
  That’s true Madhu, They do force you to reassess. And you realize that the stuff that you’ve been fretting over is so insignificant in the larger picture. Thanks for stopping by
  
Valentine Logar says:

March 4, 2013 at 6:25 pm:03

My eyes filled with tears while I smiled through the entire read. Thank you so very much for sharing this. My eldest sister was born with Downs Syndrome, my heart mother fought to mainstream her but when Candy was born in 1945 doctors recommended institutionalizing children ‘like her’, their lives weren’t worth saving or living. Candy is still alive and still very special to all of us.

1. justanotherwakeupcall says:
  
  March 5, 2013 at 6:25 am:03
  
  Oh valentine really! How old would Candy be now? That’s another thing that bothers me Valentine. The way medical knowledge of the time bullies us into doing what they believe. Medical knowledge is so limited, there is so much we don’t really know about he human body and mind and yet we are expected to go against our instincts and follow what they say.
  I am sure Candy is special. You’ve ever written a post related to her. Would love to read it
  
  1. Valentine Logar says:
    
    March 5, 2013 at 6:25 am:03
    
    Candy is 67 now, far exceeded life expectations of the time. My step-mother was 18 when Candy was born and she was her first child. I don’t know all the stories, though many.
eof737 says:

March 21, 2013 at 6:25 am:03

Beautiful post… Powerful. Thanks for the pingback. I’ve been out of the loop too.
Eliz

1. justanotherwakeupcall says:
  
  March 25, 2013 at 6:25 pm:03
  
  🙂 thanks eliz. welcome back to the loop