Category Archives: Disability

Nobel Wars

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Nobel Wars

 

In the War with Polio who was the Hero? Salk or Sabin?

I have been following up the Nobel Prizes announced since last week. The surprise that was in store for all of us with regard to the announcement of the Nobel Prize for Literature for Bob Dylan was quite frankly refreshing and exciting.

As I was reading up about some Nobel Prize history, I came across this list of very famous people who deserved the Nobel Prize, but who weren’t awarded one. On that list was Gandhi as anticipated as well as my main man, Physicist Stephen Hawking. One name that  was expected and yet which irked me the most was that of Jonas Salk, the “pioneering scientist” who is hailed in popular American folklore for having “invented” the Polio vaccine and for having virtually “eradicated” the dreaded polio. He was nominated thrice – in 1954, 1956 and the late 60s. Some have argued that he should have at least got the Nobel Prize for Peace for his contribution for his pioneering work in having removed the fear of the disease that was crippling countless children across America in the 20s through 50s. How can a National Hero be snubbed?

As it happens, the real story is a very complex. Very few talk about Albert Sabin who developed the live attenuated polio virus oral drops, the same which is in use in India in our immunisation schedule. It was Sabin’s vaccine that eradicated Polio from the face of the earth except the last 2 countries of Afghanistan and Pakistan now.

Salk and Sabin were bitter enemies who openly disliked each other. Salk was a public relations man with the support of the US President’s March of Dimes initiative and millions of dollars, not to mention the doting press. Salk appeared to be shy, and shunning the media, but he actually craved publicity. When asked by the media, ‘Who owned the patent?”, Salk replied, “ The people do. There is no patent. Do you patent the sun?”

The truth is that Salk could not have patented the Polio vaccine even if he wanted to. He did not invent the vaccine.

Dr. Sven Gard, Professor of Virology at the Karolinska Institute, and member of the Nobel recommendation Committee wrote an 8 page analysis of Salk’s work, in which he concluded that “Salk has not in the development of his methods introduced anything that is principally new, but only exploited discoveries made by others.” He concluded that “Salk’s publications on the poliomyelitis vaccine cannot be considered as Prize worthy”.

Why didn’t Sabin get the Nobel prize? Dr. Sven Gard testified  as an expert in the Sabin polio vaccine trial of Griffin v United States against Sabin. Gard accepted no money for his expert testimony and paid for his own airfare and expenses. In addition Gard told the court that `Salk`s polio vaccine probably caused more cases of polio than it prevented.” Also Gard knew all about the details of the field trials conducted by both Salk and Sabin and how they had manipulated their data to gloss over the safety of the vaccine. That is why neither Sabin or Salk received the Nobel Prize.

The Nobel prize instead went to John Enders, Thomas Weller, and Frederick Robbins in 1954 “for their discovery of the ability of poliomyelitis viruses to grow in cultures of various types of tissue.” This discovery made way for both Salk and Sabin to invent their respective vaccines.

In the late 1960s, Salk, Sabin, Koprowski, and Gard were nominated for the Nobel Prize for poliovirus vaccines. Gard refused to be nominated, because he felt that they did not discover anything new, but only built upon the seminal discoveries of other scientists. This effectively killed the nomination. The developers of the poliovaccine Salk and Sabin were never again seriously considered for a Nobel Prize.

For me Gard is a personal hero who stood for the truth and who had integrity enough to recuse himself from the Nobel prize. Sabin is also a hero. I love his tenacity, passion and ingenuity in sending the vaccines to the Soviet Union and Japan for mass immunisation that gave results when America rejected him and snubbed him. He showed that the Sabin vaccine is indeed the magic bullet. It was his vaccine that finally saved the day and millions of children from permanent disability. It must be mentioned that the later versions of the vaccine are safe and effective.

The story of the Nobel Prize and War against Polio spans 50 years of rivalry and innuendo between three very complicated persons Salk, Sabin and Gard. It would be naive to look at them through the good or bad lenses, as they operated within the space, time, opportunity and necessity continuum of the day with varying consequences. However the lasting legacy is that of Sabin’ without a doubt. Someday I will make a science thriller film with this awesome plot.

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The audacity of self esteem

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I am a woman, I am disabled. I experience the world in a very different way. Disability is unique.

Disabled people face many barriers, including separation, segregation, stereotyping, labeling, prejudice, stigma. They are misunderstood and monsterised (I invented that word, as it is the best description of some of my life experiences). Their lives are made more difficult than necessary.

But disability itself recognizes no barrier. It crosses all barriers of gender, age, sexual orientation, religion, race, affluence, influence and economic status. No one is exempt from becoming disabled.

I am bullied all the time.

Complex issues surround disability. As an experience, it is very specific,  unique and  individual to that person alone, and touches every aspect of that individual’s life experience  Physical, emotional, environmental, psychological, educational, social, spiritual, financial dimensions of disability are so unique.  Each of these experiences are not necessarily disturbing or unpleasant, but certainly unique and different.

Society attempts to ‘normalize’ disabled people in order to make them more acceptable and to make them ‘fit in’.  It often finds it hard to embrace diversity and individuality, and sets boundaries to acceptance. But the truth is that disabled people sometimes need accommodations in time and space as a reflection of the reality of their needs being met, even if means treating them more favorably than others. This is particularly seen with contempt and every effort is made to thwart or resist that accommodation.

Either I am a super woman or a super bitch. There is no middle ground. Either they will condescend down to me or condemn me. They expect me to be always at their mercy. When I resist that, and show them that I don’t need their mercy etc., they have to pull me down, or picture me as someone who is completely ungrateful. etc.

It is true that I bluff a lot. I have always put up a brave front, and said that all is well. All is not well. It never was. How often we have heard people say, “you must not take it that way” or “why do you take it that way” ( in typical Indian slang). For far too long, I have defended the unacceptable actions of people for no particular reason. The premise is that, people will treat me any way they want. I am always supposed to be graceful about their piggishness. I am supposed to be eternally grateful to everyone – I don’t know why, and for what!

The slightest semblance of self confidence is projected as arrogance. A tinge of pride in one’s achievements is seen as unsavory egotism. They snicker at the audacity of my self esteem.

Why make me a goddess or a demon? I am neither. Can’t I be a normal woman?

My cup is half full

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I write about a time when I learnt life.

I was a fully qualified medical practitioner in 1996. I was no longer Aiswarya. I was Dr. Aiswarya. I found it difficult to resist the vanity of liking the ring to my name whenever I was called Dr. Aiswarya. As a person with a locomotive disability, looking back it is a bit of a miracle how I managed to finish those years in college, with its grueling and demanding work schedule. I have little recollections of how difficult it was. I guess it had its tough moments, but the good bits were far too many and frequent. I was Literary Secretary in College; I was Editor of the College magazine. I had fun and friends. But 1996 was going to be the end of my professional training. Or so I thought.

I wanted to follow my heart and take up art criticism as a vocation. I wanted to go away with a vagabond boyfriend and explore the world. My father knew that I was inclined to drift. So he talked me into applying for a post-graduate degree and it was a miracle in itself that I got admitted into a course in Pediatrics  I was upset at my plans going awry. The very thought that I did not steer the rudder of the course of my life, hurt me more than I could deal with. There was no doubt that I loved children, but I thought that it was not the vocation for me.

Initially I was a reluctant Pediatrician in training. For the first few months, I was miserable. But unknown to me, indelibly and inevitably another miracle was waiting to happen. I began to find my groove in the course. I loved to engage with families who had a child who was sick. The sicker the child, the more I was involved. I can safely say that that was a quality I found in most of my colleagues also. Pediatricians as a tribe are more compassionate than most practitioners of other branches of the medical profession. A tall claim maybe, but one that will be least contested. It was never the money or the promise of making heaps in the future, that made me take the plunge into the art of healing, palliation, rehabilitation, positive living as the case may be. I learnt so much that was not described in the books. I understood the importance of socio-psycho-economic factors, that go a long way in tailoring a child’s medical management, as equally, if not more essentially than the history, signs and symptoms.

My mentors in the process meant everything to me. Some names need to be mentioned. My Head of Department, Prof. Raghu was a good man. I am eternally indebted to him for teaching me bed side manners. He showed me how to listen to a mother. I observed how he correlated apparently unconnected information that was elicited or volunteered to form a picture in the back ground of the condition that ailed the child. The contributing factors are sometimes more important than the causative factors. Because sometimes when you have treated the cause, but refused to see the contributors, the suffering does not go away. A healer understands the difference. He showed me how important it is to communicate. The highway to healing is not strewn with diagnostics, or medications, but with communication.

I not only decided to not discontinue the course, I plunged into it with all my heart and soul. I rented a room in the College Hospital guest house and stayed in campus. I went home infrequently and spent more and more time in the wards, in the OP, watching, observing, listening, reading and learning. I befriended nurses, lift boys, and the laundry girls. There was so much to life in the corpus of those exchanges. I saw  life from another dimension, that my sheltered childhood did not allow me. Those years, or what remained of those years after those initial months of adjustment were a ride towards my actual learning. That experience taught me what I would use time and again in the years to come, and prepared me for the long haul ahead that was not to be as sheltered as my childhood.

Of course college was fun. The fact that I lived in campus (away from home) had a lot of implications for fun filled activities. I was free to go where I wanted and when I wanted. These are luxuries that do not happen at the nest called home. Needless to say that I made the most of it! It was a time of boundless energy and endless optimism. The sky was always blue. My cup was always half full. I was happy on the inside.

When you share a bit of yourself

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I have often been asked the question, why I do what I do. Why do I work with vulnerable people? Especially children. I know why. I know exactly why.

Something happened that gave me a reason, when I was doing my post-graduation in Pediatrics some 16 years ago. I was just a month away from the final exams. I was still huddled in the College and Hospital Campus, clinging onto it for the last days. I knew I would never ever get those college days back again. Those friends, those mid-night coffees at the Nair tea stall with the bread-omelettes are a favorite nook in my mind’s memory space. Did we take breaks from study to chill out, or did we take breaks from fun to study occasionally. A case of the egg or the chicken coming first pops to my mind. I had decided that I would live my life, like I wanted in the future too. I knew that I would never compromise. But this was different. There would be omelettes and omelettes that I would consume, from all over the world, but the magic of the midnight stroll will be for ever etched in memory. To this day, I hunt for that omelette.

The fifth floor of the Sri Ramachandra Medical College and Hospital was for those people who could afford expensive medical care. The rooms there could be compared with those of any posh up-market hotel room. The service there was premium. One day, as the clock was running out of my time left on the course and the campus, I accompanied my Chief on one of his medical rounds on the fifth floor. We entered the room of a 6 or 7 year old boy with spina bifida leading to paralysis from his waist down. However his intelligence was intact. He had been admitted on one of his numerous trips to the hospital as he had developed an infection in the shunt that was created in his head for draining the meningocele that was also part of his condition.

As my Chief meandered through the hallways, entering and exiting rooms filled with eager, anticipating patients, I accompanied him along, slightly behind, but always catching up. We entered this child’s room. As my Chief interacted with the parents in his customary fashion, I interacted with the kid in my customary manner. This child was in bed and I first made eye contact with him. The kid responded, silently. Something about this response was not normal. Kids always respond to me. I do not impose myself up on them. I give them respect. A kid is always able to discern when you do not condescend and talk down to him. Kids have to be absolutely sure if they can trust. Especially in a hospital context, a child quickly learns to be suspicious of everyone in a Doctor’s Coat.

This kid warmed up to me.  But, I could tell that something was amiss in this kid’s face. It was not a happy face. It was the eyes. The sparkle was not there. It was not a tear stained eye, but it was a sadness laden eye. It was those eyes that give him away. A kid at that age has not yet learnt to camouflage his unhappiness to the world. So I picked up on his scent of sadness and instinctively I looked into his eyes. They were big and beautiful and deep. They were intelligent too.  In the next few minutes, the medical business was transacted. The mother unloaded her concerns and my Chief, as usual answered her as directly and clearly as possible. Then the mother of all questions, “When can we go home?” was popped, for which he responded as usual and said, “I’ll review his progress and let you know in a day or two”.

It was time for us to move to the next room. When I turned to move, the kid caught hold of the hem of my apron (doctor’s coat) and would not let go. He did not speak anything but held on to it for some time. I had to un-squeeze his grip to let go. I looked into his eyes once more, and told him that I needed to go, but I assured him that I would return later to talk to him.

 That night I returned to his room as promised. It was past nine in the night, and the family had finished dinner. As I entered the room, I saw the flicker of the TV lights on his face, and I could not help noticing the unhappy eyes. His eyes were surprised and filled with joy to see me. Life came into them. I settled down beside the child to talk to him. It was the first time I had a real conversation with him. All the basic questions were asked and we adequately warmed up to each other. It was then that he paused long and hard, and asked me clearly, and surely a few questions he was dying to ask, since he first saw me.

“Are you really a doctor?” “Did you really go to college?” “Did you actually go to school?”

My heart broke at that point for a brief moment, before I composed myself. Finally it all became very clear to me. This child was never sent to school. His parents treated him very specially, and taught him at home for fear of being rejected at school by the other kids. It is very difficult for a child with a disability to go to a normal school in India. The challenges are many. Right from access to attitude almost everything is a barrier. So the parents with good intentions did not want the child to be at the receiving end of all these difficulties and sheltered him at home. They replaced his childhood friends, his world.

As for me, I grew up in a happy home. Though I was a child with a disability, my parents did not treat me specially. And I went to a normal neighborhood school, along with all the other kids, first in a rickshaw, and then in the school bus. My teachers treated me normally. My amazing Head Mistress ensured that I always participated in every school activity. I was class leader; I was Assistant School Pupil Leader. She would always ensure that I had a part in the school play. I took part in sports day, fashion parade, fancy dress. I went on school trips. My friends in school were amazing.  Though initially inquisitive, children very soon understand and appreciate the diversity in school mates, if taught well.

An unhappy child just breaks my heart. A child with a disability is particularly precious. The vulnerabilities are multiplied. The longing to have a chance to do everything that other children take for granted is not recognized well enough. We exclude them from living life to their fullest because of the misplaced intentions and insecurities of parents and teachers. Sometimes they just don’t know enough.

That day, the child’s probing yet honest questions showed me the pain of being “special” and excluded. I counselled the parents about admitting the boy in a school near his home. In the months that followed, I facilitated the process of enabling reasonable accommodations in the lifestyle and infrastructure of the child and stayed on until he went to school. It is many years now and I haven’t stayed in touch with the family. But I know he must be doing well.

That day, when I put out my arm to reach a sick and sad child, I learnt a valuable lesson in sharing a part of myself. It wasn’t much. But it was enough to flip the frown of that child into a smile.

My recurring dream…

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When I was 3 years old I had an infection due to the Polio virus, which left me with a residual paralysis of both my lower limbs. I grew up not knowing that I had an impairment at all, thanks to a supportive family which was committed to my well-being. An inclusive environment at school, for which I am eternally indebted to my wonderful teachers, and an amazing woman, Mrs. Williams who was my Head Mistress, paved the way for seeking joy and excellence in every later pursuit. Awesome colleagues, friends that I cherish, have played critical and complimentary roles in making my life’s passage meaningful, and the battle worth the effort.  Not to be forgotten along the course of this arduous journey were both mentoring bosses and  monster bosses! They have ensured that the trip so far has been eventful!

I live lacking nothing mentally or physically. Here I am!  I am successful, I have a life!

When I was young I had a recurring dream. I thought I would, if a dream be possible in this life, sit on a stool in India, and for as long as it took, administer polio drops to children in every corner of this vast nation. I would sit day and night giving away polio drops. I would go to every urban and tribal nook of India, and squeeze these drops into the mouths of wailing children. I dreamt that I would become old and gray. I dreamt that I wouldn’t have time to cut my hair, and that it would grow, and grow, flow over my body, my stool and run on the floor, and serenade all over the place. And I would consistently and persistently continue to give polio drops. I would stop only when all the children were inoculated and protected!

I have lived to watch and witness the wonder of the Pulse Polio drive, and the remarkable Polio Eradication Initiative reduce the incidence of polio in my country. India completed two years without any case of Polio on 13th January, 2013. When WHO struck India off the list of Polio-Endemic countries, joy overwhelmed me. As an implementer of public health programs on a large scale, I understand the massive effort and innovation that would have been mounted by the Government and partners to achieve this goal. It is no mean challenge to reach each and every child in India! Flash backs from an old unforgotten dream, come flooding back. Only the little girl in me, knows what this means to me!

I know that dreams, no matter how silly, or grandiose, are indeed fulfilled!!!!