Mistakes
They actually published it. Now if I am unable to graduate, you'll know why. I think I cringed a couple of times reading such a badly edited version of what I'd written. I feel inclined to vindicate myself; this is the original letter.
[Edit: I've added a couple of links; the beauty of the internet.]
***
Dr. Lee’s letter, “’Successful’ operation was a mistake” (ST, April 13), leaves me part frightened by her slippery slopes and groundless presumptions, and part saddened by her insinuations.
Dr. Lee throws up a hypothetical scenario: had Jamuna and Ganga’s parents not chosen to go ahead with the surgery, the twins would have died earlier, and their parents could have “carried on with life and probably would have more children who are normal.”
Where does one start to tackle the blatant absurdity in that postulation? If there is some kind of crystal ball for us to reflect on all of our what-if’s in life, I would surely like to know where it is. If the parents had chosen to let the twins die, without giving them a chance at life, could they not also be wrecked with debilitating guilt enough to drive them to a lifetime of grief? Just ask the many women who deal with post-abortive depression.
Furthermore, having “normal” children, while being a blessing not to be taken for granted, is not the only indicator of the quality of life. The “abnormal” children, if we would only allow ourselves the privilege to learn from them, will teach us a different kind of love -- one that transcends “normality.”
Dr. Lee sweepingly asserts that “no parent can ever give a truly informed consent when first confronted with the news that their child... will be disabled.” What constitutes a “truly informed consent” begs definition; the parents were informed that the twins would be “significantly disabled.” It could not have been an easy choice to make. Would they have changed their mind if they were given more time to decide? How much time would we allow them to have before accepting their decision as a “truly informed” one?
Many women (and men) make decisions about whether or not to abort their unborn children who have been diagnosed with disabilities. Some choose to devote their lives to caring for their physically and/or mentally dependant children. I am doubtful that many of them think that if they had been more “informed,” they would have made a different choice.
Dr. Lee opines that the twins’ mother is on the same page as she is; the mother has stated that she has often thought of “[dying] with Ganga.”
To raise a child -- any child -- demands a great deal of responsibility, even more so to raise a disabled child. Feelings of despair and doubt are understandable, but many will tell us that, even so, if they had to do it over again, they would still have chosen to give their children a fighting chance at life.
Besides, there are many other things that can drive a person to suicide; not all parents of disabled children who express frustration and helplessness take their own lives (or their children’s). There are more parents who triumph daily in the face of such adversity.
Dr. Lee warns that it will “only get worse” as the twins “grow bigger and become more difficult to feed, bathe and carry.” No one would think otherwise. But if everyone gave up on the “difficult” situations, now that would be more cause for worry.
If it is to be increasingly difficult, it means that they are going to need more help. Instead of clamouring over a decision that cannot be changed, we would do better to focus our efforts on offering that aid.
If Dr. Lee does not agree with the action that the twins’ parents had decided to take, she is most certainly entitled to her opinion; if she ever has to make decisions of this kind, it is her prerogative to choose what she deems is best.
But to lash out at the choice to live as a “mistake” is appallingly insensitive, and -- above all -- disrespectful, not just to the parents of Jamuna and Ganga, but to everyone who chooses to valiantly fight the daily battles of raising “abnormal” children.
[Edit: I've added a couple of links; the beauty of the internet.]
***
Dr. Lee’s letter, “’Successful’ operation was a mistake” (ST, April 13), leaves me part frightened by her slippery slopes and groundless presumptions, and part saddened by her insinuations.
Dr. Lee throws up a hypothetical scenario: had Jamuna and Ganga’s parents not chosen to go ahead with the surgery, the twins would have died earlier, and their parents could have “carried on with life and probably would have more children who are normal.”
Where does one start to tackle the blatant absurdity in that postulation? If there is some kind of crystal ball for us to reflect on all of our what-if’s in life, I would surely like to know where it is. If the parents had chosen to let the twins die, without giving them a chance at life, could they not also be wrecked with debilitating guilt enough to drive them to a lifetime of grief? Just ask the many women who deal with post-abortive depression.
Furthermore, having “normal” children, while being a blessing not to be taken for granted, is not the only indicator of the quality of life. The “abnormal” children, if we would only allow ourselves the privilege to learn from them, will teach us a different kind of love -- one that transcends “normality.”
Dr. Lee sweepingly asserts that “no parent can ever give a truly informed consent when first confronted with the news that their child... will be disabled.” What constitutes a “truly informed consent” begs definition; the parents were informed that the twins would be “significantly disabled.” It could not have been an easy choice to make. Would they have changed their mind if they were given more time to decide? How much time would we allow them to have before accepting their decision as a “truly informed” one?
Many women (and men) make decisions about whether or not to abort their unborn children who have been diagnosed with disabilities. Some choose to devote their lives to caring for their physically and/or mentally dependant children. I am doubtful that many of them think that if they had been more “informed,” they would have made a different choice.
Dr. Lee opines that the twins’ mother is on the same page as she is; the mother has stated that she has often thought of “[dying] with Ganga.”
To raise a child -- any child -- demands a great deal of responsibility, even more so to raise a disabled child. Feelings of despair and doubt are understandable, but many will tell us that, even so, if they had to do it over again, they would still have chosen to give their children a fighting chance at life.
Besides, there are many other things that can drive a person to suicide; not all parents of disabled children who express frustration and helplessness take their own lives (or their children’s). There are more parents who triumph daily in the face of such adversity.
Dr. Lee warns that it will “only get worse” as the twins “grow bigger and become more difficult to feed, bathe and carry.” No one would think otherwise. But if everyone gave up on the “difficult” situations, now that would be more cause for worry.
If it is to be increasingly difficult, it means that they are going to need more help. Instead of clamouring over a decision that cannot be changed, we would do better to focus our efforts on offering that aid.
If Dr. Lee does not agree with the action that the twins’ parents had decided to take, she is most certainly entitled to her opinion; if she ever has to make decisions of this kind, it is her prerogative to choose what she deems is best.
But to lash out at the choice to live as a “mistake” is appallingly insensitive, and -- above all -- disrespectful, not just to the parents of Jamuna and Ganga, but to everyone who chooses to valiantly fight the daily battles of raising “abnormal” children.
posted by Laughingcow at 2:03 pm
7 Comments:
great post/letter. i especially like the past para.
thank you for writing something i somehow no longer possess the courage to even attempt... i hate this country, sometimes.
hey, i thought it was you... =)
*thumbs up*
nice piece. but I have to note that neither of you nor Dr Lee are wrong, based on your respective values.
in her situation, she's working on the presumption that her net personal utility arising from:
a. cost and burden of care (negative utility) multiplied by the high possibility of failure
b. total cost of death (fixed utility)
c. Cost of having a healthy child (positive utility) multiplied by the low possiblity of cure
according to her, given the high negativecost of option a and the low positive value of option c, option b is the best choice.
her flaw was in failing to realise, that parents (and loved ones) are entitled to a multiplicity of treatment choices according to their value systems. Democarcy is about personal autonmy and choice within circumscribed limits. The utility will naturally go up depending on their value systems. At some level, the positive utility of having a healthy child, or a child that is alive is priceless on a personal and social level, which she did not at all consider.
how do we value life in itself? our less privileged members? Eugenics?
I wonder what she would do in her personal situation when her father/someone in her family suffers a really bad stroke. would she pull the plug? might be an interesting poser to her.
Those are all very good points. However, my case in point isn't about which is the "better" choice -- to live or die (even though I do have my own thoughts on that), and it certainly wasn't about utility.
I'm not concerned about what choice Dr. Lee would make -- it is her own to choose. I'm concerned about the insensitivity on her part for not respecting someone else's choice.
i read your forum piece in the straits times... i have a disabled sister myself and i understand what you mean by a love than transcends normality. thank you for having the courage to publish this, it was very touching. :)
Thank you, and an overdue thanks to everyone else who said nice things. :) I only wrote what I felt.
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