May 21, 2006

Children of a Lesser Science1

Myra is 23, and lives in India. She has no blog, does not know what a mobile phone is, and is not into Rap or Rehman. She speaks hardly to anyone but her mother. She has little or no control of her bodily functions, and is completely dependent on her parents for everything, 24x7. I doubt if she had any notion of love, marriage, or motherhood. And she has absolutely no idea of what awaits her in this world for the next fifty odd years that she might live. Myra is mentally impaired, possibly due to cerebral palsy, and lives in a world of her own, that has few, if any, gateways.

Myra was born in 1983, normal delivery, and apparently a healthy baby. I knew her (that's an exaggeration!) from when she was two years old. She was quite a happy child, learning to walk and talk. Looking at her then, no one could have predicted how she is today. Silhouette of a woman Occassionally, Myra'd have seizures and fall down, unexpectedly. As the seizures became increasingly frequent, the worried parents took her to a reputed neurologist. I had accompanied them to the clinic. The neurologist ordered an impressive battery of tests for Myra. After completion of the tests, he declared that she was epileptic, and prescribed an equally impressive battery of medicines. In the precious ten minutes that he had given to Myra and her parents, he said very little beyond that she was epileptic, which we already knew. He didn't explain his diagnosis of her condition, what the prognosis was, what the potential side effects of the drugs were, or what precautions should be taken. He advised Myra's parents to bring her back to the clinic every month for a check-up. On some visits, the dosages were adjusted, and on others, the drugs were changed.

Scientists knew less about the brain and the central nervous system then, than they do now. Needless to say, I knew next to nothing. Taught to be skeptical, though, I was astounded by the confidence that poured out of every pore of this neurologist. As the years rolled by, my misgivings were confirmed, and Myra became progressively worse. Eventually, her parents gave up on the neurologist, turned to alternative medicines, and then gave up on those, too. A school for children with special needs might have helped, but Myra's parents could not afford to live anywhere close to an area where one was located. Today, for all practical purposes, she leads a vegetative life.

Was Myra an undisclosed recipient of experimental treatment? Not a small number of publications resulted from the experimental treatments of neurological disorders such as Myra's. Often, we would read something along these lines,

The Hobbit Land Journal of Medicine reported disappointing results on the effectiveness of Synthetic Dopamine in the treatment of Cortex Degeneresis. Discussing the results of a unique 20-year long study of 75 children aging from 2 to 7 at the start of the study, Drs. Jane and John Doe said that...".

Are children legitimate human subjects in experimental studies? In developing countries such as India, even adults cannot be expected to give informed consent, so how can children be? If you thought I was exaggerating, read recent criticisms of the widening practice of out-sourcing drug trials here, here, and here. Is John Le Carré's "The Constant Gardener" (now a film by Fernando Meirelles) a fiction or a fact couched in fiction?

How much did the Pharmaceuticals component of my 401K savings appreciate since 1985? What's Myra's and her parents' return on the investment they had made in the development of the new drugs that contributed to this appreciation? While the CEO's and the CMO's of the drug companies are maximizing their shareholders' wealth, the guardians of public interest are busy furthering their private interest. They have very little time or interest in the plight of children subject to poorly monitored drug trials. Myra does not vote, cannot vote, and so, cannot be counted in the vote banks that every one of them is after. Her cause does not bring them global visibility either, and so, cannot be counted in the honoraria in dollars for their lectures against the dollar.

How many schools for children with special needs are required to teach them the basic skills of survival? How many are there now? How many Banyans are needed to take care of all the Myras after their parents have disappeared from their lives? How long will it be before Myra is gang-raped by anthropomorphic animals, who will one day be the society's shining leaders? Will those who claim that they oppose the women's right to choose, ostensibly to protect the rights of the unborn, please stand up? Can we count on you to pay some attention to the rights of the born? Do you hear Myra humming:

Had I known my fate then
I'd have dissolved in the womb...

--- from the Tamil film, Sindhu Bhairavi, Lyrics: Vairamuthu, Music: Ilayaraja

1The title is adapted from Children of a Lesser God, a film on the deaf, by Randa Haines.

  1. I have a couple of friends whose children have similar conditions - it has completely altered their life and their worldview. It is a constant learning for them on how to cope with the child's needs and behaviour. It imposes a lot of courage and sacrifice from the immediate family. Sometimes they try experimental treatments in the hope that there may be some remedy and in any case they feel it can only get better. Don't you think that experimentation on one generation of children is necessary in the hope that an effective treatment can be found for the future generations of such children? isn't that how medical science has developed over the centuries? I know it comes across as an insensitive statement and I do not know if Id be saying it if it was my child which was being used as a guinea pig but how else can you find cures?

  2. Usha,
    As you may have noticed, I raise a lot of questions towards the end of my post, but few, if any, answers. You have just added to my woes. I'll attempt to answer your question, though, but I expect it will be too long for a comment. Look for Children of a Lesser Science - Part 2!


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