The Ethics Committee Workshop.

(3 May ’09)

            When I agreed to be on an ethics committee as a lay person, I hadn’t a clue what it was going to entail. I was told I needed to read the consent form for patients (this was a medical ethics committee). If I understood what was written, they were sure anyone could. (Advantages of having a low IQ, I thought to myself, get to be on a committee and all!!). Sounded easy.

Wasn’t.

 For a couple of times I sat uncharacteristically, perfectly silent through the meetings because I couldn’t understand a word of what was being heatedly discussed. Later I came to know that this was amongst the most debate-filled committees in the city. Advantage mine. Over a period of time, I added words to my vocabulary: placebo, randomized study, double-blinded, unblinding, multi-centre, exclusion criteria. I learnt to improve my diction by saying pharmacogenetics and epidemiological.

            The consent form that I was supposed to read came with 10-40 attached pages of Greek-Latin-Japanese-Eskimo-Sanskrit sounding words, quite unpronounceable and certainly impossible to spell on one’s own: drug names. Drugs means medicines in this context. I worked hard at understanding what ‘this’ was all about.

‘This’ means clinical trials. They were/are happening all over the country, involving multi-national pharmaceuticals. Since India needs to protect its own, there are (really good) guidelines and protocols to follow, chalked out by the ICMR. The Ethics Committees, which comprise a mix of medical, pharma-, legal and lay persons, ensure that the participants aren’t subjected to unsafe practices or unnecessary risks. It’s not a question of gut-feeling, intuition, “I think this is wrong” but clear scientific reasoning, calculated risk-taking, logical steps involved. Hence the tomes to read before one can give ‘informed consent’.

No doubt there are loopholes that crooked people will use, but it’s heartening to note that there are several seriously concerned persons (amongst doctors and others) who want to protect the interests of participants and are doing something about it.

There were obviously other lay persons on other such committees who were as lost as I was, so Dr. Urmila Thatte of KEM hospital Mumbai and her team decided there should be training for them. I had acquired just enough knowledge to be kicked up from the chair to the stage side and was on the Faculty (sounds great, but involved days of hard work making a presentation). The topics covered what bio-medical research was, evolution of research ethics, components of a research protocol, compensation issues and my baby: the informed consent process.

Occasionally, the attendees threw up questions. One diamond-stud wearing ‘social worker’, possibly in her ‘sixties, was more concerned about the fact that we lay persons were called ‘non-scientific members’. I don’t think she knew the meaning of lay, else she wouldn’t have insisted on being called one. Some wondered why Indian lives weren’t compensated in dollars. Were our human lives worth any less? That was a topic for a sub-debate. Who monitors/audits the committees themselves? A sub-sub-debate followed. The sponsoring company had its own point of view. And the arguments veered way away from the main subject every time and had to be dragged back by the moderators. The more I interact with the medical community, the more I find that there are as many very concerned practitioners as greedy unethical ones. Here, too, I was reassured by the reactions of those present that they wouldn’t let the bad eggs get away. Not an easy task in India. It’s easy to be cynical, difficult to fight the system, and these were fighting hard to make sure clinical trials were fair.

Now, armed with a little more information than before, am looking forward to more meetings, waiting to learn about what’s happening in the field, in the country, of a subject that’s excitingly new here.

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Perspective.

(5 April ’09)

            Looking back at the last eight years, I wonder how I’ve managed it all. A full time job, managing the house with a part-time (one-hour) domestic help, six books (my pride and joy) and freelance writing. Some say I’ve turned into a machine. Some say it’s stressful. Can’t say. For I’ve also taken great holidays, read books, witnessed incredible classical performances (music, dance, plays) on stage.

            I’ve lived in a colonial bungalow in Jodhpur, right under the shadow of the Umaid Bhavan, in Bareilly where my house stood in the middle of an acre sized compound… I’ve set up home in the most beautiful places: Ooty, Srinagar, Avantipur, Hyderabad, Tambaram, and yes…Goa. They’ve all been charming. I’ve tended rose gardens, had monitor lizards as ‘pets’, chased my Labrador away from squirrels, fed peacocks on chilly Halwara winters, done several treks in the Himalaya and the Sahyadris, drunk wine straight out of the cellar at Nashik, cooked leisurely meals, para-sailed, participated in dog-shows (well, I didn’t, you know that), and more. It’s been an enviable journey.

I’ve worked in Delhi and Goa.

But it was Bombay that gave me attitude. It sharpened my mind, it taught me to value merit, work hard, focus on the task at hand. It taught me not to take professional criticism as personal comments. It taught me to sift and select the correct things from tradition and not follow blindly things my grandmother did. It taught me that a good worker was more important than which community s/he belongs to. It has stimulated aspects of my life, allowed me to speak fearlessly. The feudal nature of other parts of India are less (not entirely absent) here. Relatives don’t rule every aspect of my life…well, at least one has a choice of leading one’s life the way one wants to without imposed familial dos and don’ts.  It has given many courage to live on, live on, live on.

In spite of the clean, bright blue sky which I love, the green expanse, the fronds of my favourite tree: coconut, the juicy flesh of my favourite fruit: mango, the flavour of my favourite seed: cashew, in spite of the fact that I love my home state, I find myself clinging to Bombay. Friends tell me that one’s energy levels don’t depend on where one is, that Goa’s not necessarily laid back, it depends on what one does, and what one chooses to do. But clinging to Bombay is about other things. Here, neighbours are friendlier, for the colony or society culture, which is but an extension of a village-spirit is alive and kicking.

It is Bombay which has shed the curtain on the ugliness of incest and child abuse so common in India. I am amongst those who believe that India is one of the worst culprits of children-abuse in the world. Ok, maybe parts of Africa, Pakistan, Bangla-desh are competitors, I don’t know. Whether it is to make children work or take advantage of their helplessness to satiate adult lust, I believe India leads. Why? Because of the silence that is expected from children. Because of misplaced loyalty that one expects from family. Because of the way we glorify suffering in silence. Bombay breaks away from that norm. At least, it tries to. Whether it’s defying extreme right-wingers or encouraging gay movements, whether it is living together in harmony after inter-religion riots, whether it is championing animal rights’ movements, or saving a heritage locality, whether it is ‘adjusting’ in a packed train compartment (unparalleled anywhere on this planet)… Bombay leads.

Having said that, having lived and worked in other places, I can confidently say, the only other place where, in spite of the occasional hiccups, women can live, work and travel on their own, where the oppressed have channels to speak their mind, where the old and the modern meet is Goa. Not internationalized Bangalore, not power-packed Delhi. I hope these elections give us a government that nurtures that spirit. I trust Goans will make that happen. That’s the only ‘item’, ie: political awareness and public will, where Goa leads and Bombay lags.

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Tears n Cheers.

          If you ask me the time of day I get a lump in my throat. I’m that sort of person, happiest when miserable. Glum without reason. I sniffle whilst watching Chitrahaar or standing for Jana Gana Mana.  If I see a policeman guiding traffic with flailing palms and elbows, I have to hold back on-coming sobs. If the traffic obeys him, I howl. I can cry because the sun has risen and then again when it sets. The poder on his round, when he honks on that balloon like gadget, triggers sadness in not just me, but even the dogs (who express that sadness through long-drawn howls) and crows in our neighbourhood. When a fisherwoman reduces the price of a wato without me having to bargain myself hoarse, the water in my eyes isn’t sweat. Same-same when the auto-wala doesn’t cheat me outrageously. (Rare, na?) I cry when my neighbour switches on her air-conditioner because the choin-choin sound it makes gets on my nerves. She cries because we’re so silent. “Neighbours must,” she tells me, “share reversing music (the noise cars make whilst reversing) and mobile ring-tones … otherwise what’s the use?” This phrase, “what’s the use” is one of my favourite tear-jerkers. When someone says it, out comes my tissue-box. 

 “You must eat mangoes during the season, otherwise what’s the use…?”

 “You have a sore throat. Drink haldi-milk, otherwise what’s the use…?”

 “Now BJP is in power, we must have special status, otherwise what’s the use…?” So far no one has explained what the phrase means, but anyone who’s lived in Goa for long has to understand it, otherwise what’s the use…?

If weeping cleanses the soul, mine must be tattered with all the laundering.

These days, mixed tears abound. The bus-conductor who shoves me into a Bombay-local situation triggers off sad hiccups. When he and the other passengers push me out of the rusty and rattling vehicle, I deal with more tears, but of relief. How lucky I am to have survived the ride, I think. I think the same on the Betim-Panaji ferry during office ‘rush’-hour.

          Our television GuessWork Channels gave me plenty of reasons to shed tears last week. ‘News’ was passé. Before our PM swore in front of mikes, cameras, swamis, neighbours, industrialists, film-stars and other not-so-aam persons, streams trickled down my cheeks. Because of boredom. You see, the salty-liquid overflows my eyes when I yawn. Fashionably made-up twenty-somethings with fancy diction panted into my television screen wondering just who would become a cabinet minister, get which portfolio, sit next to whom at breakfast time, whether NawShar would come, etc. This went on for twenty-four monotonous hours, day after day, with repetitive advertisement-breaks. When finally ‘the list’ was announced, there was an I-told-you-so competition amongst the channels that cheered me up somewhat. I love clowns, even when they’re wearing suits and ties.

Other things that cheered me up: the train accident in UP. with 3297 survivors. (The convoluted logic of thinking about the living, not the dead comes from my CA. Tax, he says, is 30%; think of the remaining 70% to make yourself happy.)

Then, our mangoes came back from Europe; their lowered prices have banished the tears.

Third, the clogging and overflowing of the naalaas has been delayed by nine days, according to the meteorological department’s prediction of the monsoons’ arrival.

An episode closer to home dried up my lachrymal glands in surprise and annoyance. A young land-survey official was measuring someone’s small residential plot during a site-inspection for land-conversion. The owner was a ‘senior’, a retired person wanting to build a small house with his savings. The land-survey official made the old man pick up the tape, walk here, go there, hold the end properly and taut, bend, stretch, hold hands up, walk through some shrubbery... it was good to see a young government official involving the citizenry in his work without discriminating by age. I’m sure this official wouldn’t discriminate by gender or caste either. He’d be equally callous to pregnant women and snooty builders.

About the accountability and transparency happening in Delhi: I’m waiting for a trickle-down effect so that Goem sarkar will also become people-friendly and efficient. Just the thought gets my tear-glands a-working. The brimming lids will squeeze out some drops … as soon as the Regional Plan is finalized, the transport problem is tackled, the garbage issue is resolved, the mining and tourism industries are on track …. Hope springeth eternal.

Sniff.

The Mobile World

(11 Jan ’09)

            I must be the last Mumbaikar to own a mobile phone. Correction, it was thrust on me by the powers-that-be where I work, so I still can’t claim ownership of one. Yes, now I have two. To me, a couple of months ago, a mobile phone was a cordless receiver in the palm of a friend who paced down and up and down and up his tiny flat. He moved, hence the phone was mobile, I figured.

            One day, up on the sixteenth floor in my office building, I started at the sound of a rooster crowing. It wasn’t sunrise, and it wasn’t a farmyard. Ignorant me, didn’t know it was just a mobile ring. Pretty soon I learnt of asses braying, rockets firing, snatches of Chopin’s classics, bhajans, patriotic numbers, clanging bells, etc. I also heard one message-aaya-message-aaya-message-aaya disturb a quiet afternoon in the library, after which the rules insisted on only vibrator-modes. A funnier one was ‘it’s the phone, you fool, pick it up’. Now there are ‘daddy’s calling’, ‘mom here’, babies wailing, babies squealing in laughter and recording(s) in the voice(s) of the phone-owner(s).

            For myself, I chose bull-frog for one phone and tin-can-tune for the other. Then, for calls from Boss, it’s a vomiting sound, for one from husband it’s water flowing (ah, when it’s in a jeans’ pocket, heads turn), for calls from close friends, it’s the signature tune of the company.

            A decade ago, the most irritating thing was the car-reversing tunes. Nights were disturbed by repeated Saare Jahan Se Acchaa and/or twinkle twinkle little star or jai jagdish h’rray. I feel very sad for gods, specially hindu ones, because they are called upon to listen to their names (echoing horridly around heaven) at all times of night/day, in bylanes, compounds, the highway, whilst parking…poor gods. Now, the menace is the mobile phone. But, one wonders, how did we live without them? hm?

            Last weekend, at a hill-station, I heard a familiar sound. The koel’s throaty call. I turned and saw no one near me, I was the solitary figure on that kacchaa road. I swiveled once more, only to realize that this was no mobile phone ring, this was the real stuff. That’s how deeply the city has intruded into my soul. The upside is that I’ve connected with so many friends from the past, in distant lands, that the mobile really has shrunk the world. And smses have become a part of literary events: I’ve taken part in two sms poetry competitions.

            Smses remind me of the messages that flooded my set after the Mumbai gun battle on 26/11. Against and about regional political parties, against and about the media coverage and lots of glory, glory, glory about the local cops. On this latter point, I have my views. The three senior police officers who were shot dead did nothing brave at all. They were bystanders who came in the way of the bullets. They didn’t know who was shooting, the shooters didn’t give a fig who they were. Their deaths were a big bonus for whoever was behind it all. And for that, some people have actually asked for gallantry medals to be awarded to them? How silly is that. The really brave ones were anonymous, not at all in the limelight, and the officer who led them, who knew in that pitch darkness when he kicked in a door, that there would be terrorists, murderers on the other side, waiting to blow him to shreds. He knew he was entering his grave. Yet he did so without faltering, and his loyal troops and colleagues followed him without giving the itsiest thought to what might happen. They had a job to do and they’d do it successfully. That officer is battling grievous injuries to his head and face in a local hospital, well away from the media. He and his kind are noble and brave, not the three cops who died. The latter may have done great deeds whilst they were alive, and let’s remember them for that. Their death wasn’t heroic. Let’s give this a thought. We in Goa must give it a thought, for the Paradise may well be on the hit list. No point being complacent. I keep bringing up this topic lest we forget.

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