Category Archives: Memories

Where are YOU on International Disability Day’2016?? ………Facts, Failures and Future

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My friend Sai Padma reminisces about what the International Day of People with Disability means in India today.

Sai Padma

2016

Let us work together for the full and equal participation of persons with disabilities in an inclusive and sustainable world that embraces humanity in all its diversity.”

UN Secretary-General Ban Ki-moon

Today is International disability day. Another year has come and passing on for disability sector, every December we wait for something, we anticipate and pray for certain things, we have the audacity to think that things will change towards inclusion. We hope that this year will be the end of discrimination and abuse. We are tiresomely happy sometimes, that though you are burned, somewhere something is happening for better. Some years we cringe and cry helplessly, that years together activists who have worked and made petition after petition, works day and night, their work goes down the drain on a Disability Day… then we take a fall, dust off our insults, gather the energy of rights and take another…

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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.

One small step for Beno Zephine, a giant leap for all women with disability!!!

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Beno Zephine felcicitated by Ms. Shantha Sheela Nair IAS

Beno Zephine felicitated by Ms. Shantha Sheela Nair IAS

Beno Zephine’s achievement is a shot in the arm for me and for millions of women in India! She is India’s first 100% visually challenged women to be selected for the Indian Foreign Service on merit. In fact I have been looking all over the internet to see if there was a precedent for a woman in such a position elsewhere in the world. I was aware of Avraham Rabby, America’s first blind diplomat, because I interacted with him on a teleconference several years ago at the US Consulate, Chennai at an event to mark World Disability Day. I was pleasantly surprised to discover that Pakistan has been ahead of India, with Salma Saleem entering into their Diplomatic Service in as early as 2008. Our own Beno Zephine joins this list of illustrious diplomats who are trailblazing the international arena of diplomatic challenges with their charm, persuasion and personality.

Ms. Beno scored an All India rank of 343 in the UPSC exams results declared in 2014. Though she was selected a year ago, it took an entire year for the government to allocate her to the IFS as they had to make procedural changes in their rules for her accommodation. Finally the changes were made and she created history as India’s first officer with a visual challenge in the diplomatic service.

There is nothing extraordinary in Beno’s upbringing and family circumstances other than the fact of her parents unflinching support for her to pursue her dreams. Her father Luke Anthony Charles works in the Railways in the IRTC department and mother Mary Padmaja is a house maker. She has a brother who is a Software Engineer working in Canada.

Born with a 100% visual impairment, Beno went to the Little Flower Convent Higher Secondary School, and later graduated from the Stella Maris College, Chennai with a B.A in English Literature. She did her post-graduation in M.A. English Literature from Loyola College, Chennai.

There were not many books that are accessible for Beno in audio or Braille and particularly books for civil service aspirants are hardly sufficient or available. Beno and her parents spent a lot of time in getting several of the material converted into Braille. She also used special software called JAWS – (Job Access with Speech) that allows her to read from the screen. She also prepared by scanning the required papers on to her computer. During preparation her mother spent several hours reading for Beno from Daily newspapers, magazines and from all the other books that were not readily available in JAWS compatible format or on Braille.

She lost out in her first attempt for the Civil Services but she didn’t give up. The second time that she tried in 2013-14 she got through. “The first time, I studied really hard. The second time was easier,” said Beno Zephine. Speaking at a felicitation program for her organised by the Society for Rights of All Women with Disability of which I am an office bearer, Beno Zephine wanted women everywhere not to give up on their dreams and to pursue them with fresh vigour not counting the difficulties.

Speaking at the felicitation program the Chief Guest Ms. Shantha Sheela Nair IAS, Vice- Chair Person, TN State Planning Commission. Ms. Nair, said that this is not only an achievement for a woman with a disability to enter the diplomatic corps, but that it is a feat for any woman to be involved in the fore-front of international policy and decision making. She urged Ms. Beno to document her experiences on a daily basis and to share her journey with the public at large on an ongoing basis in the form of blogs, articles to the newspapers etc. She stressed Ms. Beno’s moral obligation to inspire people coming after her.

What struck me about this young woman was her quiet confidence, and joyful personality. What moved me was her parent’s commitment to her welfare. What frightened me was that henceforth, all women with disability will be compared to Beno for raising the bar so high, and that a repeat or a catch up will be daunting! But what thrilled me was that the Law of the land was catching up with the rights and entitlements of all persons with disability. In future it will become difficult for the Government to deny them what is their due.

Hurrah for Beno! I wish her all the best for a stellar career!

Margarita, with a Straw. A reflection.

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Margarita I saw “Margarita, with a Straw” with a great amount of curiosity and expectation. The performances were top notch, the credentials of the makers and all involved are bonafide. But the film did not work for me. In parts. And that is where the problem lies.

I want to talk about the film from two, no three perspectives because I think it is important. I want to reflect on the film from my own point of view as a woman with a locomotor disability who has been unashamed of her sexuality, and from the point of view as a member of the community who is largely unacquainted with issues related to disability and sexuality, but who is deeply empathetic. I also will try to wear my health activist lenses for a moment and try to interpret the message from the point of view of someone who has fought aggressively for the rights of everything that is marginalised, oppressed, suppressed, and less understood.

Swinging from acknowledging and portraying the sexual needs of one or two disabled young women, this film traces the arc all the way to disabled pornography as a show-and-tell for the ‘normal’. Remember those well made porn films, with a story, where the entire action takes place within a clever plot?! I was very hard pressed to differentiate this film from those. After all, why do we see porn? We see others make it, the different ways in which they make it, circumstances under which they make it, and different partner combinations making it. Same here. It was like an episode from F.R.I.E.N.D.S without the explicit sex scenes, and the friends here are either in a wheelchair or physically challenged in some other way. Because in F.R.I.E.N.D.S anything that everyone does is cool and normal. So we are told.

The whole point of the film is about Laila and her coming to terms with her libido, and her winning ways to claim love (sex), unsuccessfully or successfully. I am totally cool with Laila’s promiscuity. But what about Laila? Who is she? What does she love? Who does she love? What does love means to her? What are her aspirations, fears and world-view? She was like one of those hyper hormonal adolescents I know who are so uninteresting. For a writer who gets accepted into an American College on a scholarship for Creative Writing, she has very little to show for her depth in her personality and her quest for life and love. I came away knowing very little about her. Truth be told, if Laila were a real person of my acquaintance, I hardly think that I would be friends with her. What was Laila’s passion? The film does not reveal and so the film is very uni-dimensional in that sense. Was Laila endearing? I think not. Was she inspiring? Hmmmmm. She needn’t be. Is she just a girl with normal feelings trapped in a body bound in a wheel chair? I think the issue is not so simple. And that is where the film lets me down.

The other problem I had was in the strategic decision to dove-tail a same-sex relationship within a disability context. Did you ever wonder why there aren’t any protests? Surely all the right-wingers can’t be fashionably cool about an occult depiction of a lesbian relationship suddenly. There is enough provocative material in the film to keep the saffron, green and white brigades restlessly happy for weeks. Why are there no calls for bans? I think I can take a guess and put forward an over-simplistic explanation. Two negatives cancel each other. Two non-normals make an appeal to a normal. It’s an allowance.

I was worried about Laila contracting some STI or getting pregnant. I would have been interested in knowing how Laila perceives her risk of getting infected or her concerns about having an unwanted pregnancy. She negotiates no protection whatsoever. Surely that is ‘normal’ sexual behaviour.

On the way back from the film, my friend Olga couldn’t help exclaiming whether the New York encounter where Laila’s white male classmate Jared has sex with Laila could not be classified as ‘abuse’. Then another friend with us in the car deconstructed the situation and said that Laila had not only consented, but she was the one who made the initial move. The explanation was sufficient, but I could not help being concerned about Laila and her scope for abuse, given her vulnerability and her openness to experiment.

For me, Revathy was the real rock star of the film. She brought a beautiful depth to the many layers of her role as a mother. She is the mother we see every day providing unstinted care and support with joy and pride to their disabled child. Parents of children with disability are the real heroes. A special child makes any mother an Amazon. As I punch my keys now for this blog, my eyes are shrouded in tears remembering my father, now gone to be with his Maker, and my mother, who was in every way dissimilar yet representative of Shubhangani Kapoor.

Laila’s mother, Mrs. Kapoor is the protagonist for me. She made everything possible. Though her own value system was unfamiliar with ‘different’ relationships she accepts Laila and her choices unconditionally on her death bed. 10,000 points for Revathy.  I am yet to see a finer portrayal of a mother on screen.  She just slid into the role, and gave such a mature, deeply heartfelt essay. Revathy has been involved with the cause of disability for more than 15 years and her instinctive insight into the complex issues shows.

Of course, all the rest of the cast did a superb performance, chiefly Kalki and Sayani. I have seen so many films with the protagonists in wheelchairs, believe me, it is very difficult to differentiate mimicry and imitation from acting. However, because a disability is a novelty, it tends to be easy to pull it off convincingly, by contorting the face and the various body parts, and by talking with a lisp and a slur. I still stand by my firm belief that there were better performances over Redmaynes’s portrayal of Stephen Hawking this year, and that his winning the Oscar was a bit of a disappointment for me. The most authentic depictions of disability to date in Indian cinema, have been by Kamal Haasan. I couldn’t help but remember his memorable Chappani, a man with spastic hemiplegia (a type of cerebral palsy) in “16 Vayadhinile”(1977). Such an endearing character Chappani was.

Of course the character of Laila was at a very hormonal stage in her life and needed to grow. In the last scene where she has a date with herself sipping a Margarita with a straw, was perhaps her coming of age moment. But her growth and journey so far were very awkwardly and superficially done.

Something about disability on screen tugs at our heartstrings. The more emotional buttons we push, the better received the fare, when all other parameters are reasonably taken care of. I think ‘Margarita, with a Straw’ is one such tug. I only wish that this translates into respect and attention for the needs of disabled woman in real life.

The Pottallam Reader

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Caty

This is the story of Catherine, my father’s mother, a peasant woman.

My grandmother was a little girl when she was married. She told me that she was about 8 or 9 years old and playing in the field one day, when her brother came looking for her to fetch her home. She wondered why her playtime was interrupted and went home crying only to find out that she was to be given in marriage that afternoon. That day she was hurriedly dressed up in some new clothes by her mother and was taken through the rituals that took place in the front yard of their hut. She was so tired from all the crying and bewilderment, she fell asleep on her father’s lap during the ceremony. She did not remember the groom nor the rest of her marriage ceremony very well. After her marriage that day, she stayed back at her parents’ home until her puberty. Upon getting her first period when she was 13 or 14 years old, she was sent to the home of her husband to live with her new family. All the other children, her siblings, had typical rustic Indian names, but her father named her Catherine, and no one knows why now. I never did ask her how she got a Christian name like that. For much of her married life she was a Hindu and had another name. It amuses me now, to realize that she had a name like that. Funny, it never struck me as odd, when she was alive.

Soon she began to have children in quick succession every year without a gap. I think she managed to have at least 12, of which 9 survived. My father was her first born. She was still reproducing at the time of my father’s marriage, and his youngest sibling was an infant suckling at his mother’s breast at that time.

I guess this is not an unusual story for any little girl that grew up in the same village, at that time. The one little difference that separated Catherine from the other children in the village was that she learnt to read and write, when most of them were illiterate. In fact  most members of her own family were illiterate. She was fortunate to be sent to the local government primary school by her father, much against her mother’s wishes. So her formal education happened in those 3 or 4 years until her marriage. She was probably taught the Telugu alphabets, small words and small sentences and nothing more. But she was a smart woman and she never forgot.

Catherine was determined to send all her children to school. This was an unusual wish for her to fulfill in her part of the world. She was a poor untouchable woman, and in those days the practice of untouchability was very much alive and kicking in the villages of India, as indeed it is today, though its manifestations are more subtle now, and the community of untouchables is protected now by the Law. Those were the days when India had just got her independence and the social milieu was very different from what it is today. I guess words cannot adequately describe how ugly things were for these disenfranchised people back then. Even if words could be found, images cannot be conjured to mark those regressive times.

My father was the first boy in the village to go to College, a remarkable achievement, not so much for the boy as much for the mother who made it possible. Those days Dalit or Untouchable children from the rural parts of India did not have many reasons to go to school and college. There were no schemes to ensure their enrollment. For the poor Dalit families tattering on the edges of starvation and poverty, putting their children in school was a loss of a farm hand and therefore wages. Only a fool would send his son to school!  The benefits of education had not yet captured their imagination, and they did not comprehend that it would pull them out of their vicious cycle of oppression and suppression. What good is a son who can read and write, if he has to come back to the fields to work as a coolie, a laborer at the end of the day? What options lay before him when he finished school? The way their world view unfurled in front of them was that this education could do nothing to reverse their fortunes and circumstances. It was futile to have such aspirations.

But Catherine was determined and she had her way. She sent her son to the primary school in the nearby village and then to a school about 10 kilometers away, for higher classes. She sent all her other children to school also, but it was my father who took exceptionally well to academics. Most of the other children dropped out. It is nothing but sheer magic that my father thrived under those unseemly circumstances.

Anyway, the story goes that my father would give her books to read, and she would read all of them with a great passion. She read everything she could lay her hands on. There was not much material for her to read in a remote village nook. So she would read the papers that were used to wrap articles of food items or other consumables bought in the local kirana shop. We call them pottallams or parcels. After unwrapping the pottallams, she would preserve these scraps of sundry paper and read and re-read them, even though they had no beginning or end, no head nor tail. It was perhaps a shred of a newspaper, or a fragment from a magazine. She read it all and enjoyed greatly the created word. She escaped into the world that this fragment offered her a peek into.

When my father grew older, he got her books from the town’ government library. It did not boast a great collection of books I imagine, but she read with eagerness any book that was placed in her hands. My father told me, that she had read every book from the library.

Once my father left home to go away to the big town, to continue his high school studies, he stayed in the government welfare hostel, and he visited her only during the holidays. In a way, it was a going away for my father for good, for after he left, he never really returned home in the strict sense. But every time he visited her, he remembered to get her books to read.

My grandmother told me that she was always having babies, and there was so much work to do on the farm and at home. Her older children were away at school, and they could not afford to hire laborers, so the couple had to double up and work, looking after their now newly acquired small piece of land, their cattle and their fowls. One can imagine that there would have been no time left to read. Not for Catherine! She told me that she continued to read her books, while she was nursed her babies at her breast. That was the time she squeezed for herself to read.

Almost all of us can recollect our grandparents telling us stories, and Catherine was no different. One summer when she came to visit us, when my brother and I were small, she narrated the entire Mahabharata to us in daily installments, with all its many, many subplots, and florid characters much to our great fascination. The stories were more breathtaking than any grandiose TV serial. She also regaled us with stories from the Ramayana, Jathakas, Sindbad, and the Panchatantras to name a few. Catherine was very graphic with her details and her word imagery was powerful. In due course when I began reading the wonderful Amar Chitra Katha comics as a child, I remember telling myself, these are the same stories, that my grandmother told me, but she added greater detail.

Later in life, she was introduced to the Bible, and towards the end of her life, she read only the Bible and abandoned reading any other book, save this one. I could be mistaken. But I do believe she did not read any other book, and only read books and magazines related to the Bible. That was her personal conviction and a decision that she made for herself. She read and re-read her Bible many times over. She would quote large passages from memory with great ease, and give references without any difficulty.

She must have been 55 years old, and I was a young woman just out of Medical College, when she complained to me of blurred vision. She was in despair, as she was not able to read. By that time the family fortunes had ameliorated, and she was well looked after by her children. She didn’t need to work at all. My father wanted her to come to the city to live with us, but she preferred to live in her beloved village. She spent her days in her room, reading and enjoying her Theological books. Once her sight failed, I was the one who took her to an Ophthalmologist, and had her operated for cataract in both eyes and I am fortunate to have looked after her during that period. How grateful she was to me! The restoration of her eyesight was nothing short of a miracle for her. I don’t think she really cared for anything much in her life other than her books. She didn’t want money, didn’t crave good food, jewels or clothes or anything else that people want when their children fare well. The TV had no fascination for her. She was content with her books.

Looking back, she was a peculiar woman who did not belong to her era and social setting. She read till her last day. Her books were her companions all her life. Only three of her children became graduates, and the rest of her children didn’t show any aptitude for reading. My father did very well for himself and became a civil servant in the elite Indian Administrative Services, and went on to hold important public posts and made a distinguished career for himself. It strikes me as no small achievement for a lowly peasant woman to see her son go that far.

Of all her grandchildren, I was the one who inherited her love for books, the most precious gift anyone could ask for. I never ever thanked you, Nanamma.