My Ma

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My Ma died on Christmas day. She was a special Ma.

Thinking of childhood is so nostalgic. That is especially true because my childhood was really a lot of fun. I did not go to school until I was 8 years old because of my polio, that I contracted when I was 3. Lucky me! I was schooled at home until then. My mother taught me to read.

I remember having a surgery when I was 4 or 5 years old. It was a hip release or something like that. I was in a huge plaster of paris cast and was in bed for a long time. I am unable to tell, if it was a month or two or just a few weeks. I remember my mother telling me stories to keep me entertained as I lay in bed. My mother did not study beyond high school. However, I remember her reading every day, just to fill me up on stories, for I had quite an appetite for them. I would listen and ask for more. And she never disappointed me. I enjoyed that very much. Looking back it feels so good.

We moved to Coimbatore, as my father was posted as the Additional Collector/District Magistrate of that city. We were given a huge British Bungalow to live in. It was such a stately home – a vestige of the Raj. It had a huge banyan tree and acres of land around. My mother tended a well-maintained garden with all kinds of flowering plants there. I ate my food perched on a low branch of the Banyan tree. I was still recovering from the surgery and I was thoroughly pampered! My mother would gather the children of the office staff– the office attendants, the drivers, the dhobi- who also lived on the campus, and she would tell all of us stories. She would make us sit on the floor of the corridor that ran along the bungalow. She would give us Rasna to drink and murrukku and rose cookies that she made to eat. We sat in a round formation, and she would tell us a story a day. The next day, one of us had to retell the story back to the group, to the accompaniment of much laughter and impatient prodding. For Christmas that year, she made all of us do handmade ornaments for our indigenous Christmas tree. It was the most rustic Christmas tree ever. They were mostly made of various kinds of paper, string, glue and clay and color. Then she organised games for us, and gave all of us small gifts, which she wrapped like a giant toffee.

Every day she would go into the garden and bring back flowers which she strung for me. Violets of different hues and violets with stripes. Kanakambarams. Jasmines. Roses of every size and color. She would dress me up like a button. She would take time every day in the morning and evening to do so.

She would bring back the wounded mynahs and kingfishers from the garden into the bungalow and nurse them. She would set them free.

She made the prettiest smocking frocks. For my 5th birthday, she made a violet smocking frock which I vividly remember. It had the most intricate colorful pattern. She hid the frock from me for all of those months that she was secretly making it. On my birthday, she sat me on a chair on the front porch, closed my eyes, draped me in it, and then made me open my eyes to see it. I remember being thoroughly thrilled. She also made panties for me with a lot of frills. They were the sweetest things a little girl could wear. I look for those frocks and panties in shop windows whenever I go shopping, and I have never seen anything quite like them!

After my father died in 2002, I did not see her happy face. Her personality slowly started changing and I didn’t realize then that she might be sick. For a couple of years I was antagonistic to her as I didn’t understand her. We did not get along at all. She was severely depressed. Subsequently she went on her religious trip to make matters worse. This once amiable parent morphed into someone who was totally unlike herself. She was always frowning and filled with fear.

Only very late did I take her to see a Professional. Shame on me. Many times during those 7 long years that were difficult, I began to fear, if I ever imagined the good childhood days with my mother. Did it really happen just like I thought it did?!

On Pongal Day 2009, she had a heart attack and while admitted in the hospital, she had a cardiac arrest. I thought she was gone. I made a pact with God even as the medical team were defibrillating her, to give me 10 more years with my mother. It was nothing short of a miracle that on the third shock she was resuscitated and came alive. Subsequently she fought valiantly for 6 weeks in the ICCU and sailed through. Something happened to her in there. She was never depressed after she came out. It was a new lease of life in every sense of the word. We saw the former twinkle in her eyes. My young cousins told me with incredulous disbelief that they never knew, that Pedamma/Atha was so much fun!! I never imagined that such a recovery were ever possible, and it once again reposed my faith in God.

And true to my pact it will be 10 years come Pongal this year. Those precious 10 years were a gift from up above. It was stories at the dinner table all over again. So much joy and simple pleasures. She supported all my risky ventures wholeheartedly. She cultivated her own ring of wonderful friendships and did what gave her pleasure. She read her Eenaadu newspaper from top to bottom and kept abreast of current affairs. She read her Bible and prayed fervently. She watched her Shubavaartha TV with relish. It was a faith that was so pure and innocent. I spent many hours with her talking to her about her fun childhood with all her siblings. We went out a lot.

I asked for 10 years and I got 10 years. I regret not having asked for 15 years. I regret that I never learnt her recipe for peethala pulusu or pappu chaaru. I regret that I did not see her face the last time she served me coffee as I was couched over my keyboard typing something furiously. So many regrets. If I could only have one more day with her. But that will have to wait until I myself make the cross over to the yonder shore.

The stinging absence is unbearable. My heart may explode. Craving for one more hand grasp and squeeze of your fingers.

I told you so many times. And I’ll tell you once again. I love you Ma!

 

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.