Saturday, October 07, 2006

Towards A Perfect World?

My first acquaintance with Down’s syndrome happened in my early teens when I used to go to Cottolengo Special School in Fort Kochi for physiotherapy sessions twice a week. A boy with chubby cheeks and small eyes used give my mother company while Sr. Annie and Sr. Margaret tried hard to flex my extra-stiff limbs.

I wasn’t aware of what that boy was suffering from or what his condition was called. I began to understand the condition much later during my days in Raksha, a special school in Kochi. I understood that this condition happened due to chromosomal abnormality, which could be detected even during the early stages of the pregnancy so it was possible to terminate the pregnancy if one wished to.

During the same time I happened to see a debate between the moral brigade and the science brigade on BBC about the pre-natal detection of disability. The next day I took up the subject with someone, who had experience of working in disability field, she said that striving for a perfect world and our reluctance to accept something different may be good arguments, but I won’t advise anyone to knowingly bring a disabled child into the world, when we ourselves are not sure about our lives how can we bring a child who will need our support all his life.

Some days back my friend Nilesh posted a news item on his blog titled Down Syndrome births drop: Decline suggests abortions up in wake of better tests

I again took up the subject with another able-bodied friend who is ten years younger to me , married and with a child, with no connection in disability field except me. He reflected similar thoughts as the previous person I had discussed the subject with.

I myself am unclear on the subject, I have sometimes wondered (and sometimes wished also) what would have happened if similar tests were available for Cerebral Palsy before I was born. The world in which I live in would have been a slightly different in my absence, better or worse is anybody’s guess.

P.S. but during a meeting held recently to discuss the proposed amendments in the People with Disabilities Act, which has provisions for prevention of disability I realised that this pre-natal detection is similar to sex-determination test, which is illegal.

P.P.S. imagine sometime in near future a test is developed that could screen defective foetuses that have the potential of turning out to be wife-beaters, hate-mongers or child-abusers then this world will surely be perfect.

19 comments:

harimohan said...

Dear Paresh
The posting was apt .
Yes there is an accusation by certain quaters that it is not correct !
As far as i know prenatal sex determination is illegal but not detection of abnormalites ,iam with you 100% that if we can avoid a child with defects doing no harm to mother or baby we should go ahead .
i voiced this in Chennai PD act discussion and was questioned by one fahionable matron ( it is always people who have no experience in disability personal or otherwise but are in it for elegance who raise ethical objections ( for eg against capital punishment etc ,etc ,it sounds fashionable )
She asked me it is like a murder for which i declared ( a little emotionally ) that if i had known about my daughter at that time by prenatal tests i would not have allowed her to be born ,for which there were howls of protest with the word murder liberally used !!
there is nothing wrong in using science to avoid calmities and peole like this will always object for them it is only a matter of discussion for them not a life ahead .
Dr harimohan

J. Sri Raman said...

A perfect world may not be possible, but prevention of disabilities should be.

Paresh Palicha said...

Doc: thnx for your very long comment. You gave me a totally different perspective on the matter. But as I've mentioned in the post that I'm unclear on the subject & do not endorse it wholeheartedly as you seem to have understood.

JSR: Thanks

jayshree shankar said...

Dear Paresh,
Having worked closely with children with disabilities and their parents. I feel that detection of abnormality in a foetus and termination of pregnancy thereafter is the choice of the parents concerned and no one can sit on judjement regarding this.As parents, since none of us can assure our own longevity of life, the quality of life of the their disabled child after our time, will be of constant concern, apart from all the other challenges they have to face right from infancy to adulthood.Having worked more than half my life in the area of disability where my job has been to equip both the child and the parent and the society at large with skills for effective and meaningful integration, I have yet to find an assuring solution to the fate of the children after their parent's time.while prevention of disabilities is ofcourse a primary concern, if we do have a choice with regard to the fate of a foetus with abnormalities, we must weigh all the pros and cons before we take a decision.

Velu Nair said...

I am glad that this space has been updated. So glad!! :)

Paresh, I am not an authority to speak on subjects as these, but all I would like to say is that in this world not many, abled or disabled, make a difference. The world goes on, with or without them. But as it goes on, the small creatures putting up a brave front and frantically living something called a life, run into fellow creatures and strike up relationships that help them put up a fight against all the odds. And I am sure, u have made a difference in the lives of several of those whom u have met. Even in the lives of those whom u havent met as yet.

Believe me, for I am one of them!
:)

A Big Hug for u this Sunday.
:)

Dilip said...

Paresh,

I'm one personally affected with Cerebral Palsy. The words i listen to, the pityful stares, the sympathetic treatment when i turn out to be victorious like king... i'm the only one who knows how well it is not worth living life this way. If i had the opportunity of detecting disability before birth for my child i sure will abort it or worse even if i go to jail i will put the child to sleep the minute it is born. I would never be cruel enough to let another living person see and live my life, that im my opinion is worse than man-slaughter and i will never be that cruel. You may think i'm a lunatic but all is fair in love and war, especially when you know what's in store for you and its not all that glazzy and you know someone else is gonna go through that pain for life, better put an end to it when you can.

Thats my honest opinion.

Luv,

Dilip

Anonymous said...

Dear Paresh,

Thanks for giving all of us the opportunity to ponder on "what is perfect????"

Is there anyone who is perfect??? Do we take recourse to extreme action just because some situation is not perfect (am reminded of HITLER)????...or can we believe that a perfect world is one where everyone strives to understand, help and nurture the other without bias and discrimination.... A world where patience and tolerance and concern will override ego and superiority????

All I can say is that perhaps each one makes a decision based on one's circumstances(though I would not subscribe to the extreme!!!)....and I do want to say out aloud that you have made a POSITIVE difference to the way I view life and can't really express how much I admire you!!! I am sure there are several others you know and don't know who feel the same way too!!!

So do keep up your wonderful work, keep smiling, keep us thinking on deep issues.... and lets all believe that the perfect world will be caring enough!!

All the best always...
Suchitra

Paresh Palicha said...

JS: Thanks for your valualbe comment. It feels good when people whom you have very high regard for share their thoughts with you. Thanks

Velu: U R sweeter than Boondi Ladu or any Payasam. Thanks for your friendship.

Dilip: I wish I was brave as you. I can't even think of words like that. But I understand what u have said is very true & also the situations u described. I'm unsure what I'd do.:)

S: How can you be such a positive person? Anyways, it helps me regain my mental balance knowing that there are people like you around me. Thanks a ton.

James Bright said...

Hi Paresh,
This was a very nice post and the subject is thought provoking.
Down syndrome is a chromosome abnormality where as cerebral palsy is resulting from some kind of nervous problem happening before the age of 2 years. There can be many reasons for it. Birth injuries, lack of oxygen from many reasons, certain kinds of infections and metabolic problems etc.
Hence we can't screen them beforehand!
That is very unfortunate too!

Then how are you?
I hope that you will be doing the tag at sometime!
Love,
James.

Paresh Palicha said...

James: Thanks for your comment. In fact I was eagerly waiting for your your comment.

Doc, I know reasons for my condition, I was just wondering aloud what if :)

James Bright said...

Thanks my dear.
I know that you will be knowing about cerebral palsy more than me.
A doctor can't know about everything! They have only second hand experience!
In your case, you are the master!
Take care.
Love,
James.

Sadasiv Swain said...

Thanks a lot for high-lighting a real problem and I appreciate your sense of humour at the end of your blog posting. I'm no intellectual but wish you to come up with such issues in future too. Sadasiv

Paresh Palicha said...

Sadasiv: Thanks Doc... May I contact u when i when i want to be unconcisious?:D

Sadasiv Swain said...

Conscious or unconscious, I am always there with you Paresh. You can feel me to be with you and whenever you intensely need me as a doctor, I may not be physically there with you but you'll be taken care.

Anonymous said...

Good blog...!

monsoon-dreams said...

hi paresh,
was wondering why there r no new posts in ur blog.thanks for updating.
as a person who has a disabled child to take care of,i never felt its a burden.its too painful, but loving and taking care of such a person gives a lot of satisfaction and the expressions of love and thankfulness i recieve in the form of a smile or a gentle touch is far precious than any material thing in this world.its truly an out of the world experience!.the world is imperfect not becoz of physical disabilities but coz of the lack of compassion ,empathy and love.
and i would like to thank you paresh ,for u are an inspiration for me.
md

Paresh Palicha said...

MD: You sound like my mummy.:) But have you ever imagined what'll happen when your child grows up & face the world?:)

monsoon-dreams said...

wow!thats the greatest compliment i have ever received!(being compared to your mom)yes,i know well whats in store for kids like mine.all i can do is to make my child's life as happy as possible as long as i live and leave the rest to god coz i wont reach anywhere if i think too much.i really feel inspired by your blog,but you post very rarely these days.have a great day,paresh

Mushi said...

I can walk, talk, write like any other "able-bodied" human. So does that mean that i am perfect??

No my friend, disabilities like the one's you mentioned in ur blog are a part and parcel of life. It is these parcels in life that make it more special.

Like in your case,"The world in which I live in would have been a slightly different in my absence, better or worse is anybody’s guess." Your absence mite have haunted your family more. Losing a child whether born or in the womb is painful and harrowing.

Like Monsoon said "i know well whats in store for kids like mine.all i can do is to make my child's life as happy as possible as long as i live and leave the rest to god coz i wont reach anywhere if i think too much"
The complexities in the equation called life is beyond a mortal's wish. All he/she can do is prevent them for destroying ur life or try to improve life while keeping them aside.
So LIVE life to the fullest. Learn about the challenges, help others in tackling them and let us all hope one day the world be a better place.

AS for ur P.P.S.....yes that would be a great discovery but then for every natural process/cycle there are the pros and cons. A glitch is necessary so that the cycle improves and does go stagnant.