20 September 2011

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?