“I wanted to be normal, I became special.”

Indelible_short_film_1

Over the past couple of months I have written a few times about the importance of learning from parents and also about the challenges surrounding the labelling of children. Perhaps it was these pieces that prompted my good friend Suchitra Narayan from Kochi to send me a link to a short film that in many ways considers both of these issues. “Indelible” is a remarkable film about the lives of several mainly young people with Down’s syndrome. During this short film we hear young people and their parents talking about their experiences and feelings about living with Down syndrome, and see them enjoying participation in a range of sporting and cultural activities with great accomplishment and pride.

I have watched the film several times and each time it provokes different emotions and thoughts. I will probably return again to some of these, but for today I would like to share my thoughts on a few expressions uttered within the film that I found particularly poignant.

The first of these is spoken by a young lady early in the film. She says:-

“I am Down syndrome, so what?”

This is simply said but sounds remarkably like a challenge. Having heard her make this statement several times, I still hear this as her way of saying something along the lines of “if you’ve got a problem with this, that’s too bad for you, because I couldn’t care less.” I am always aware of the danger of misinterpreting the words of others, but her facial expression, gesture and shrug of the shoulders are all indicative to me, of a young lady who is self-confident and at ease with her situation. Certainly watching this film I was impressed by the confidence and enthusiasm of the individuals whose lives were featured. These were not all young people, and I found myself wondering what kinds of educational experiences they had encountered and how these had shaped their current self-awareness? One individual in particular, a self-assured mature lady who writes poetry, would have been of school age at a time when attitudes towards people with Down’s syndrome in many instances would have been negative. Who were the influences in her life that enabled her to talk with such confidence about her situation? What was the support available to her that enabled her to present herself with such poise and composure?

I suspect that the role of parents in the lives of all featured in this film would have been critical. Many will have fought hard battles to enable their children to find their place in their local communities and to gain the many accolades that we hear in the film. The simple enjoyment that Ashwin demonstrates in playing cricket with his friends, the grace with which Sandhya dances, and the pride of Archanan who won a gold medal for cycling at the Athens special Olympics provide a fitting tribute to those who believe in their abilities to achieve and see their “special needs” as only a secondary characteristic of their individuality.

One expression that stood out for me amongst the many wise words spoken by people of this film came from Archana Jayaram who states quite boldly:-

“I wanted to be normal, I became special.”

What particularly moved me in this statement was the idea that Archana “became special”. Once the label of Down’s syndrome was applied to her it changed the way in which she was viewed by others and possibly the way in which she sees herself. I find myself asking the question, is it the label that we apply that makes the individual special? If we did not apply the label Down’s syndrome to Archana but substituted it with “gold medallist”, or “athlete” how might this change perceptions and expectations?

This point gains particular significance when listening at another point in the film, to Dr Surekha Ramachandran, the Chair Person of The Downs Syndrome Federation, India and herself a parent of a daughter with Down’s syndrome who states:-

“Let us be what we are.”

In describing her experiences as a parent she says:-

“My goal was charted out by this girl. The fact that I gave birth to the most amazing person who has been more my guru than anyone else.”

Dr Ramachandran emphasises the point that learning is a shared experience. When we enter the classroom we should not only do so in order to teach, but we should be prepared to learn from those pupils with whom we work. For Dr Ramachandran being a parent of a daughter with Down’s syndrome has been viewed as a positive learning experience and enabled her both to see the positive aspects of her daughter’s life, and to share this learning with others.

There is so much more to be said about this film. I hope that you will watch it and share your own views of what you take from doing so. I may well watch again and return to this over the coming days.

The link below will take you to “Indelible”

“Indelible”

 

 

 

 

8 thoughts on ““I wanted to be normal, I became special.”

  1. Hi Richard – You and your readers might be interested in this documentary. It shows a young man essentially defying the expectations that came with his label to be the first person with Down Syndrome to go off on an Erasmus exchange. In my view it shows the possibilities of inclusion. I was a visiting professor at University of Bologna in 2010 and worked with Nicola Cuomo who is featured in the documentary. I was privileged to meet Luigi who is the focus of the documentary, and also Susana who made the film, and to be at the premier. It is a little long in this age of 3-minute YouTube videos, but you will be hooked after the first 5 minutes. Promise 🙂

    http://www.cultureunplugged.com/documentary/watch-online/play/9561/CI-PROVO–TRY-I-WILL

    • Hi Tim,
      Many thanks for this. I will make some time to watch this evening. There are a number of issues raised by “indelible” that I certainly need to think about some more. Having video clips of this nature are often useful in provoking ideas I find and sometimes say more than we can manage in words.

  2. Thank you suchitra and richard for the link to the film. I read a review of the film in yesterday’s The Hindu and have been wanting to see it! There was also one on ‘Algorithms’, a movie about “blind chess”. Has anyone seen it? Let me see if i can get links to both these reviews.

  3. Hi Bharati,
    I will look for the Hindu review on line. I certainly be keen to see ‘Algorithms’ too. Thanks for letting us know about this.

    • Hi Jayashree,
      Some very useful teaching materials here I think. I would be interested to know what other colleagues in Bangalore think

  4. Hi Richard,
    When I first read this blog post yesterday, I had a very visceral reaction to the video in particular. It made me return to your post again to watch the video, because it warms my heart to see the celebration of potential and talent in these wonderful individuals. I feel all the more emotional because I am familiar with the cultural values in this geographical region which have traditionally shunned differently-abled children. I am so, so very happy to see them being supported in their academic and non-academic aspirations. I can barely even ride to the corner shop without desperately huffing and puffing out of breath, and so hearing about an Olympic gold medallist in cycling leaves me agog with awe!

  5. Hi Saneeya,
    An interesting observation about cultural values in this area. We need to be cautious in the assumptions that we make. I am glad you found the film powerful, do share it with others.

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