Dimensions of our abilities

The nature and perhaps limits of our independence and dignity but perhaps not our tolerance became apparent when Robert O. Blake, ex-US Ambassador and current Deputy Secretary of State thought fit to lecture us on how to run the Police Department. That’s as local and ‘grassroots’ as one can get when it comes to poking fingers in domestic affairs and even ‘fingering’, someone might say. 

Nothing that is done add up to ‘enough done’.   Worse, some countries can ‘do’ and say ‘we stand by our actions’ and deny others the same privilege, even if what they ‘did’ amounts to crimes against humanity and what those others did and do are misconstrued and misnamed as ‘war crimes’.  It’s an uneven world where proven fact is footnoted or erased from agenda and a circus is made around allegations. 

I’ve heard people complain about the situation in Sri Lanka, especially of Tamils in certain parts of the country.   I’ve been to countries which are ‘home’ to the complainants.  I’ve seen the living conditions.  I’ve seen squalor, poverty, criminality, neglect, marginalization, zero access to decent education, zero access to healthcare, and brutal terms of exchange that entrench disparities, accentuate subjugation and perpetuate misery.   In India, for example.  In the USA too.  I’ve been to IDP facilities.  I’ve been to the most marginalized villages in this island.  I am convinced this is heaven, in comparison. 

Does our neighbour’s squalor and his/her inability to clean it up give us a license or a feel-good sense in being ‘squalorly’ ourselves, or being happy with our relative neatness?  No, obviously.  We do what we can, knowing very well that we will be vilified for not doing enough.  That’s Sri Lanka’s post-war story in a nutshell, take it or leave it, as per your political preferences. 

I know that there are Tamils living outside Sri Lanka who have helped in ways big and small, doing their bit and a little bit more to make recovery of life and dignity less rough than it is.  I am pretty sure that very few of the chest-beating agitators in Western capitals have tossed even a penny in the direction of their brethren in whose name they scream and on account of which screaming they can continue to cling to their refugee status and alleviate guilt. 

No one seems to be happy.  Not even the rich and filthy rich.   And yet, it’s all relative, isn’t it?  A friend of mine, Theja, responded to an article I wrote yesterday (‘Learning from disabilities’, Daily News, September 20, 2011) thus: ‘The courage of children with disabilities and the strength they produce to cope with their day to day existence puts us to shame, each time we complain of slight inconveniences in our lives. I know of a grandmother who started a school for hearing impaired children after her grandson was found to be hearing impaired after suffering from Encephalitis. She has been carrying on with the minimum funds and now finally managed to purchase a building for her school.’

The name of the school is Narada Savana Padanama, ‘Narada’ being the name of her grandson. ‘Years of training, coaching and requesting for funds has gone into this project which started in 1999 and today runs a pre-school to prepare the children for regular school; you can Google for more information,’ she says.

Just can’t help thinking that this world is made of lovely people.  And some pretty bad ones too.  We make our miseries, sure, but others pile things on.  And yet, we bat one, despite our disabilities.  Or perhaps because of them. 

There will always be complainers, crybabies and hate-mongers.  Their shrill objections notwithstanding there will always be work to be done.  There are children who need childhood, widows who will not be consoled but nevertheless have to make ends meet, the limbless who will continue to feel the itch in the body-part they’ve lost but nevertheless have to get from A to B, now to death etc.    If we want inspiration, the fact that they are not all weeping is empowerment enough. 

I don’t know about these the nuts and bolts of rehabilitation and recovery, the dimensions of dignity and righteousness, or the how-to of the getting-there, wherever ‘there’ might be for the relevant he or she, but writing this article was delayed by a quick visit by a man and a little girl: Senaka Edirisinghe and his daughter Jiwanthi.

Senaka used to work in the hotel trade but gave up his job to take care of his child, whom the article referred to above was about.   He happened to be in Colombo, to show her to a physician and dropped in.  He had a story to tell. An epic, in fact.  I will write it, I promised myself. 

He spoke of finding the little girl crying in school one day because the class teacher had twisted her ear.  He was in tears, relating the incident and I find it hard to write it right now.  I have never seen any father being as proud as he looked when he told me how she had gone up on stage one day to sing ‘I have a dream’ (ABBA) and how she sang ‘Master Sir’ (Neela Wickramasinghe) to the wonderment of the Governor of the Central Province and well known actor, Rodney Warnakula. 

As happens when floored by the talent, courage and tenderness of a 13 year old child who is as innocent as a 6 year old, I am left speechless. 

[Courtesy, Daily News, September 21, 2011]

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Learning from disabilities

Chalindha Peiris is the son of one of my cousins.  I first met him when he was about 3 years old.  This was at my cousin’s house after the funeral of his grand uncle.   He struck me as a bubbly, always-with-a-smile kid.    I vaguely remember my father telling me that Chalindha suffered from some disorder of the nerves which impaired mobility.  The next I saw him was a few years ago when he came to my late mother seeking advice regarding applying to universities in the USA.  He had changed, naturally.

He was now a young man who had just done his A/Ls.  He was on crutches.  Taller, naturally.  Long hair.  Same always-with-a-smile bubbliness.  I have since taken the trouble to find out what this ailment of his was.  The name never stuck and I find myself asking his mother, my cousin, ‘what’s it called?’ many times, including just a few minutes ago. 

Charcot-Marie-Tooth disease (CMT) is one of the most common inherited neurological disorders, apparently.  It affects both motor and sensory nerves and since motor nerves cause muscles to contract and control voluntary muscle activity such as speaking, walking, breathing, and swallowing, those afflicted can be severely hampered in ways that those are not probably find hard to imagine.  Progression of symptoms is gradual, they say, and I noticed this in Chalindha; when he was very small, i.e. the first time I saw him, he was walking around but with a slight wobble in his gait.  The pain can range from mild to severe and some, like Chalindha, need to rely on foot or leg braces or other orthopedic devices to maintain mobility.

Chalindha came to mind a few days ago when I received an email from someone whose daughter suffers from dyslexia on account of Cerebral Palsy.  She is 13+ years old with the development of a 6 and a half year old.  She attends a special education programme at St. Anthony’s College, Katugastota, after having suffered some unpleasant experiences at her earlier school.  What is most remarkable about Jiwanthi Edirisinghe is the fact that she had recently taken part in an all island singing competition at the Sri Lanka Festival for the Performing Arts (affiliated to the British and International Federation of Festivals for Music, Dance and Speech), had won a great deal of admiration from the British adjudicator for her rare talent and was highly rewarded for her performance. She had competed in the ‘Under 14’ category, along with talented and able children her age. 

Reading that email I realized, again, that no one is helpless and that we all have what it takes to deal with our various disabilities.  Things cannot be easy for Jiwanthi and are not likely to get easier either.  The same with Chalindha.

I remember my mother asking me to go through an essay he had written as part of his applications to US colleges.  He had written about making it to the stage, all on his own, to collect a certificate at a school prize giving.  And through all the pain, discomfort and perhaps the frustrations of not being able to do what his friends do and what he probably wants to do, Chalindha has retained his smile. He’s now in his third year in a university in the USA. 

What is also relevant here is that not all schools are equipped to handle people like Chalindha and Jiwanthi.  There are special education facilities, but disabilities are so numerous, with each case often requiring specialized attention.   There are children with physical disabilities and those who suffer from conditions such as autism. 

We are not a rich country and what the state already does in the sphere of education is incredible all things considered.  A lot of positive changes, both in policy and implementation, can be seen with respect to improving accessibility.  Individuals and institutions have played their part.  My cousin has described in glowing and grateful terms about how St. Thomas’ College, Mt. Lavinia (where her son had his early education) supported Chalindha by making all kinds of accommodations.  Ladies College, Colombo, takes great pains to provide as normal a learning environment as possible for children with learning disabilities.  It’s both kindness and professionalism. 

They empower us, these children.  They teach us determination. They show up our flaws.  They make us want to be better.  Just by doing what they do. Just by smiling through it all.  Or singing they hearts out.  I am just wondering if I do enough.  How about you?   

[Courtesy, Daily News, September 20, 2011]

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