Angry Professor - Part 3
There have been many letters following Prof Lee's on the ST Forum, but I haven't had time to comment on all of them. I would like however to respond to Anonymous at 8:25pm, who commented on my post.
Dear Anonymous,
If you are who I think you are, we have met. I welcome you to the blog, but I shall remain behind my cowardly anonymity for reasons stated previously.
No doubt 'happy endings' and 'success stories' involving individuals with disabilities exist. But that fact that such 'against the odds' stories receive publicity underlies the fact that for many, life remains a constant struggle and a strain on the emotions, time, and finances of themselves and their families.
How many unhapy stories are there to one happy story?
How many unhappy stories is one happy story worth?
And I don't just mean that in terms of money, but also in terms of the pain and anguish felt by those concerned.
Anecdotal stories may inspire, but doctors have a responsibility to temper hope with reality. We cannot just tell the patient how someone else struck the jackpot, we must also tell them what the odds are are how high the stakes are.
Specific to the issue of genetic counseling, my personal belief is that it is one thing to have an unplanned pregnancy or a child with an unexpected abnormality, but another altogether when parents attempt to 'beat the odds' and try for a 'normal' child when significant risks of an inherited disorder is already known.
And that is not to say that individuals who suffer from disabilities and their families do not deserve our help and support.
I wish you the best.
Thank you.
posted by angry doc at
8:51 pm
5 Comments:
Hi
I was actually referring to my cowardice not yours!(Also my fears of what could happen if I am no longer anonymous...)
The book I was referring to is not a single anecdote but a collection of the stories of brave young people with muscular dystrophy, spinal muscular atrophy and other nasty congenital diseases. They have come through tremendous odds and have touched the lives of many people. Would be happy to pass it to you if you can identify a drop off point- ?library??(How cloak and dagger can we get!)
But seriously, it is difficult to tell a parent who has one child who is severely disabled that he/she should not take the 50% chance of having a "normal" child to keep the disabled child company. There are many including some well known medical individuals who have disabled siblings who are that much better doctors due to their growing up with somebody with a severe disability. The unhappy stories in Singapore are the result of society's stigma and our lack of development of social and medical services to enable the severely disabled to lead as productive a life as possible. This is where we have failed you and your contemporaries in not opening your eyes as students to what is possible but focussing on the pathology. It is our fault and not yours.
We are not naive optimists either. When the young man with DMD arrived in the ICU with pneumonia, he was certain that he did not even want antibiotics as he knew that his "time was up" and that he had lived a good 20 years, blessed many and that was how he wanted to be remembered. I am no Terry Schiavo fanatic...
These are difficult issues.
Good to talk about them.
By
Anonymous, At
October 25, 2005 8:25 am
I personally feel that the disabled issue has been quite obviously pointed out to be an economic one with recent comments made by our leaders.
It is sad for some to consider that the facilities and programs for the functionally challenged should be considered only if they are economically viable.
To some it is merely a practical way to do things.
I guess all I can say is that among first world nations, this is uniquely Singapore.
Be proud Singapore!
By
Anonymous, At
October 25, 2005 12:13 pm
Anon,
Are you aware that you posted at 8:25 again? :)
I guess we are looking at a half-full/half-empty glass respectively here.
You see disability as a challenge that can be overcomed and become a tale of inspiration for us all, I see it as potential tragedy that should be avoided if we have the fore-knowledge.
By
angry doc, At
October 25, 2005 1:35 pm
angry doc,
seems that our beloved doc at monkey republic has been repressed by the powers that be again.
By
ckyh, At
October 25, 2005 2:19 pm
You rock
info here | this site | info here
By
Duncan, At
October 19, 2012 10:44 pm
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