Tag 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?

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!!!!

Airlines and Disability

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from: Aiswarya Rao aiswarya.rao@gmail.com

to: customerrelations@jetairways.com

cc: das@dgca.nic.in, dri@dgca.nic.in, scd@tn.nic.in

date: Fri, Feb 27, 2009 at 4:32 AM

subject: Incident on 9W 0739 – 25th Feb 09

mailed-by: gmail.com

Sir/Madam,

I boarded Jet Airways flight no: 9W 0739 on 25th February 09 from Delhi to Chennai at about 10:30 p.m. ( 3 hours delayed).

I am a physically challenged person and mobile with a pair of calipers and crutches. I was travelling alone and I requested wheelchair assisstance for alighting the flight of steps that lead to the aircraft, as I usually do whenever I fly.

I was assigned seat 25D on that day. This is the last but one row from the rear exit. I requested the stewardess whether I may sit in the last row as it had more leg room. She obliged as there were no one seated there already and said that she would request anyone who may turn up for the seat to exchange with me. I was happy with the assisstance given and I sat in the window seat on the right side -last row. I sat by the window so that I may enjoy the view of the city lights when we take off and land. It is also less bothersome to other passengers if they have to cross over my stretched legs to move to seats inside.

After everyone had boarded, I discovered that the seat I was sitting in was not assigned to anybody. In about 5 minutes one of the stewards – Mr. Mickey, came up to me and asked me to shift to the aisle seat. I overheard conversation between him and his supervisor just minutes ago that ‘the lady in the wheelchair’ needs to be seated in the aisle seat. When I asked him the reason, why I should shift to the aisle seat and he said that it was Jet Airways Safety Requirement, that disabled passengers be seated only in the aisle seats. I wondered why, and he answered that it was so that in an emeregency if a disabled passenger has to be evacuated, this seating will enable that they are evacuated.

I thought that the explanation was incredulous, as I have travelled on numerous occassions previously, several times at the window and I have never been given this reason for not being seated at the window. I clarified that I am not a wheelchair bound person and that the seating policy if it did exist did not apply to me, as I would be able to move out myself in the event of an emergency. Mr. Mickey said that he would get back to me. I smiled.

In a few minutes he returned with the same line, asking me to get up and to be seated in the aisle. Then he asked” What is your problem?” I said that I had “no problem”. I further clarified that I had polio myelitis. He asked me to shift my seat. I declined for the reason that I had already given him. He smiled and said that he understood and said that he would get back again.

In returned again in a few more minutes and asked me very politely, if I could just get up and sit in the aisle for the take off and then get back to the window seat after that. I was frankly irritated by this time. But I put up a quiet front and again asked why I should do so, as it is causing me a lot of discomfort. He agreed it was causing discomfort, apologised for the same, but insisted that I shift myself into the aisle seat. I was really curious this time and I asked him again what this security requirement is all about. He simply maintained that it was for all passengers who used a wheel chair for getting up the aircraft it was the Jet Airways seating policy and a safety regulation.

I told him to show me the safety instruction on seating passengers who used a wheelchair to be seated by the aisle only and not at the window. Until then I would not shift.

After that I was not bothered. Subsequently Mr. Mickey was courteous to me and served me my dinner without reference to the previous conversation.

Is it really Jet Airways seating policy to seat “wheelchair passengers” only in the aisle and are they discriminated from sitting near the window seat? Also there is a big difference between ‘wheelchair bound’ passengers and passengers who use a wheelchair only in airports for transport into the aircraft. Again, I am not a ‘lady in the wheelchair’, as identified by one of the main steward to Mr. Mickey which I overheard.

I hope Jet Airways is more sensitive to physically challenged passengers. I am also a member of the Tamilnadu State Coordination Committee for the Disabled and this attitude of airlines crew is disturbing.

Further the Civil Aviation Requirements (CAR) Section 3 Series ‘M’ Part I – Carriage of Physically Challenged passengers by Air issued by the Office of the Director General of Civil Aviation, New Delhi (dated 1st May 2008) states in its clause 7. 2.1 that “passengers with reduced mobility including the blind shall not be restricted to any particular cabin or seating areas, except when it is done for safety of passengers and avoid interference with evacuations or due to physical limitations of the aircraft”. If at all, I was seated away from the exit near the window and would not be an interference to evacuations!!

Expecting a clarification on the seating policy of Jet Airways which if it does exist, appears to be very unfair and going against the CAR issued by the DGCA.

sincerely,

Aiswarya

from: customerrelations@jetairways.com

to: aiswarya.rao@gmail.com

date: Fri, Feb 27, 2009 at 10:58 AM

subject: Fw: Incident on 9W 0739 – 25th Feb 09

mailed-by: jetairways.com

Dear Ms Rao,

This mail is with reference to youremail of date.

Kindly allow us to examine the issueraised by you and we will surely revert to you

May we kindly request you to bear withus in the interim period.

Yours Sincerely

R Viswanathan Customer Relations

—– Forwarded by CustomerRelations/Litolier/Jetairways on 02/27/2009 10:51 AM —–