Wednesday, March 19, 2008

The Shadow Series II : Shades of Stigma

I remember the time when I had to go for this interview for a job in an agency that worked in the field of HIV & AIDS. After a round or so questions my interviewer (and eventually boss) asked in what way could people who were HIV positive be accommodated in the organization. Having never worked in this sector before I was a little stumped. My reply was that they could be any offered job that they were qualified for and were healthy enough to do.

For added measure I added that if any one of them was better equipped for the job than me, they ought to be taken in as any other candidate would be. In spite of that some what naïve answer, I was offered the job. It was only after having accepted the job and beginning work that the import of the question that was asked in the interview came through. For, stigma against those who were HIV positive were just about every where and the effects of stigma translating into discrimination in different spheres of life was equally pervasive.

It is not easy to discover the odor of stigma – an attitude that attacks like a mad dog, without reason and rationale but bites to kill and maim. In spite of every thing an understanding of stigma in a scientific age still eludes me. I remember the time when I first met a gay person, a chap who had done his MBA from a reputed institute and was dressed like any other man in the room and looked the same. He spoke for an hour on the discrimination that he faced from childhood, wanting desperately to be like other men, attracted to girls and women and not other men but it never happened. His parents tried every thing they knew from science to faith healers, when they gave up and he grew up, he tried every thing but nothing worked. Finally when stigma caught up with him even in the starched world of his corporate sector job, he quit to lend his talents to a Trust involved with sexual minorities.

I haven’t forgotten that man yet and I doubt that it will ever will any time soon. From him I learnt the lesson that stigma not only has no reason, it is no respecter of class either. Education will not necessarily eradicate it, in a grotesque fashion; it may actually amplify your hates and dislikes. I know many, many people who have probably never really known a single gay person in their entire life as friends or even acquaintances in any depth, but have read a book or two or may be just one book…. And based on what they have read ghosts and images appear that they then learn to shun.

There used to be a time when there used to be a lot of leprosy colonies and leprosy homes. Belonging to another century very literally – most were set up in the late nineteenth or early twentieth century, these colonies used to house cured or deformed leprosy patients who had been cast out by their families. Those who had children, used to send them out to stay in these homes where they could go to school away from their “tainted “parents. Those who were not lucky enough to find place there used to beg on the streets with open sores crudely bandaged. Similarly the water the Dalits drink is differently designed, and their tea cups in the tea-shop are located in different time and space. and the shelter under the tree for a landless Dalit is not really made of an equal summer. That was stigma, out in the open and pretty much in your face and it was correct.

But stigma is not always out up front, in your face. No one can explain women who became HIV positive after sleeping with no one but their husbands face stigma — or for that matter why their children do not get admission to schools. Why sexual minorities face discrimination just because of their orientation is different and not because they have been seen “having carnal intercourse against the order of nature” using the language of the penal code or why even well-to-do Muslims find it tough to make headway when it comes to buying property even in so called progressive cities like Mumbai.

Yes stigma is certainly an open sore; very much of the sort that we see on those chronic leprosy patients out there begging on the streets. But the greater stigma is the one lurking in the shadows. It lies in wait like an unseen phantom present every where but visible no where except in the nearest mirror. There it stares back at us glassy eyed, as we preen ourselves in front of it – about our education, our awareness and most of all our empowerment from all those notions that others but not us are captive to. That unspoken stigma is the bigger fear and it will not be so easily overcome without a long and arduous battle.

Monday, March 17, 2008

Shadowy Objects of Pity

The other day I was traveling in a small town in North India and had settled down for lunch with my hostess in a cozy restaurant when a school bus drove up across the road. The bus was empty but a quick look at its signage gave me a hint about the kind of school it was. Before even I cold venture to ask though, my hostess who too had noticed the bus spoke to inform that it was the bus for a school for the disabled and that it was doing a great job in that small town in looking after the educational needs of the disabled children.

There is little doubt that the school whose name starts with Karuna…… is doing a great job but it is a question to ponder upon as to why disabled and other handicapped people need our karuna- a word that does not lend itself to easy translation into English but which has in built with in the components of pity, compassion and mercy. But why should disabled children be objects of pity? Is it their fault that they were born this way or subsequent to being born were maimed by polio or hit by a car in a road accident or in some other way, suffered a debilitating disease that left them crippled in some form and dependent on others?

Admittedly, pity and compassion are far better responses to plain indifference and neglect that one might typically expect to face given the stigma attached to disability. The whole issue of stigma in a supposedly civilized society to people with leprosy, disability, epilepsy is of course a subject o study in itself. But coming back to ground realities – consider this : “According to India’s first ever published disability census report (Census 2001) released in August 2004, of the 21,906,769 physically and mentally challenged people, 16,388,382 live in rural areas. The National Sample Survey Organization (NSSO) in a study released in April 2004 has concluded that only 9% of the disabled people had higher secondary education and in rural areas less than 1% were enrolled in schools.”

With these dismal statistics, it is of course correct to reason that compassion and karuna are far more desirable motives and emotive movers than callous indifference in our society and some one doing some thing even out of pity, is better than vast numbers of people doing simply nothing at all. However it would be nice to move to a situation where we recognize that people who are handicapped, disabled, differently abled , whatever way we choose to address them; are not objects of pity – they pay taxes, fulfill the obligations and duties of citizens and discharge their duties as individuals living in a town or village with in their own limitations like any one else – it is just so that many of us are a little more adept at masking our short comings and limitations whereas among the disabled , their short comings are pretty much visible up front and so we the smart and the able bodies can throw occasional alms of pity at then and sedate our souls.

Of course it is not a matter of the disabled alone. It could be about the mentally ill or “paagal” in street parlance, the destitute and the derelict, the elderly and the frail— although charity is better than nothing, it is good to move on and recognize that they have a place in the world, that they have some thing to contribute and that they have rights, though they may not have the strength or the understanding to demand them or fight for them. Very often human rights are left to be interpreted and enforced by the state and have come to be associated with custodial deaths, encounter killings and such other nefarious activities. Of course human rights is concerned with these matters and should be. But human rights is also a matter for the common citizen – to go beyond indifference and ignorance to display karuna and compassion and pity and all the associated emotions – but then go beyond that to recognize that every one has human rights and it is every one’s responsibility to help enforce them – in small ways or big….

Tuesday, March 11, 2008

Palliative Care : Love in a time of Hopelessness

A couple of years ago a friend of ours was diagnosed with cancer. After the usual treatment with radio therapy and chemo therapy had run its course and it was clear that the patient was terminal, he was moved home. However the rigor of looking after the demands of some one who was getting weaker by the day was far too demanding for the family which too understandably was going through its own emotional stress. Some one suggested that the patient be shifted to a hospice. The suggestion was made on two counts – first, that this would provide an opportunity for the family which was physically and emotionally exhausted to recuperate and secondly because as a person approaches an “ end of life” situation, the level of care required becomes increasingly professional with pain management components combining with emotional and spiritual therapy.

At that time, in the city of Delhi, there was only one hospice existing that any one knew of; so some one went off to enquire. The nuns running it were welcoming enough but said that they usually were quite full and a place became vacant usually when some one passed away. In effect, there was a waiting list for their facility at most times. However on this occasion, a bed had just become available fortuitously which could be allotted. So the friend was shifted to the hospice where amidst the best possible care that he could have received under the circumstances. He died there a few days later.

With increasing life expectancy in India the incidence of diseases like cancer are on the rise and yet as we found out through our own experience, we are only beginning to recognize the value and significance of palliative care or” end of life” care as it is also has been termed. Palliative care in India is beset by many barriers. A key factor is the ominous overtones inherent in the word “palliative” or end of life. Even if all available evidence says so, it is not easy for any one to accept that their loved one is terminally ill and that conventional treatment to try and “cure” is not going to work any more. It is not easy to accept that the wisest and the most compassionate course of action after a certain point of time is to prepare some one for their last days. End of life care begins operating from the premise that a cure is no longer possible. The focus of care and treatment starts with the intent of accepting the inevitable and making the patient spiritually, emotionally and physically prepared for dying. This is a rather radical paradigm shift for the medical and nursing care givers too, as their traditional training them prepares them to treat with the intent to cure.

Typically palliative care in India has typically tended to be restricted to increasing shots of morphine as cancer progresses through the body. But of course palliative care is more than pain relief though that is an important component no doubt and will continue to be so. The rise of HIV & AIDS and other debilitating diseases has widened the parameters of palliative care and it is no longer just pain relief or “end of life” care. Today it is not only terminal care or only for dying. “Palliative care now emphasizes the quality of life of the patient and the treatment required to maintain as normal and positive a life as possible, irrespective of the number of years of life left and whether or not eventual cure is possible.”

Incidentally, although palliative care is a relatively new field in the country, one state where it has stuck deep roots is Kerala. The state has two-thirds of the approximately 100 palliative care services in the country. These services cover a population of 32 million in a country of over a billion people which of course is grossly inadequate. The missing link as well as the gap- deliberate or otherwise is summed up well by the statement made some time in the late 1990s, the famous psycho-oncologist Buckman who said that “there was one missing chapter in Harrison’s Textbook of Internal Medicine. The missing chapter was, “What do you do when all the treatment advised in all the other chapters fail?”

Palliative care is that missing chapter. It is missing in our planning, priorities and programs but is fast emerging from the shadows as an urgent necessity as we and our loved ones live longer and become more and more prone to debilitating and life threatening diseases that can not be perhaps be cured but with some a professional approach endured, and possibly endure well.

Monday, March 10, 2008

A Bahu from Bengal

Kerala has been a pioneer in man power export in many areas and for long. But a new manifestation of this export should be causing all of disquiet. The state has largely been known for its export of man power as NRIs but of late it has begun exporting women as brides in girl starved North Indian states like Haryana. On the face of it, cross cultural marriages in an ethnically fragile country ought to be encouraged as a cementing factor – except for two things – The “ export” of brides and their relatively easy availability would mean that there is even lesser incentive for communities in many of these North Indian States to abort female fetuses. Demographic threats have often been held out as a potential deterrent that might work to retard the increasingly wide spread malaise of female feticide.

The other thing that is happening is that human trafficking, particularly trafficking in women and minor girls is shifting shapes and is often enough now coming disguised as marriages. Trafficked women are no longer clandestinely bought and sold as used to mostly happen, it is possible now to “marry’ such women and then “divorce’ such women who then go on to “ marry” other men.

With marriage – whatever be its colors enjoying social sanction, it becomes difficult to prosecute any one and with birth certificates and mirage registrations largely non existent in rural hinterlands, it is next to impossible prove that a particular girl was a minor or that a particular woman was not married but trafficked. In India in any case, the Prevention of Immoral Traffic Act despite its name, covers only offences occurring in brothels and non brothel based trafficking as occurs in these kind of sham marriages are not covered. So effectively India lacks current ant trafficking laws.

Of course the issue of trafficking and women being trafficked is not restricted to Kerala and is perhaps more rampant with more dire consequences in other impoverished states. “Trafficking can be disguised as migration, commercial sex or marriage. But what begins as a voluntary decision often ends up as trafficking as victims find themselves in unfamiliar destinations, subjected to unexpected work,” A BBC report for instance quoting the Assam police informs that since 1996 3,184 women and 3,840 female children have gone missing in the state and many have ended up working as call-girls around Delhi or used as “sex slaves” by wealthy landlords in states like Punjab and Haryana. That piece of statistic means that we are talking of about two women a day.

The market rate for a bride currently it seems is between 4,000 and 30,000 rupees ($88 to $660) and the custom of buying brides has not just infected the states of Haryana and Punjab only, it is spreading. In a district where the urban sex ratio is the lowest in the country at 678/1,000 and where the largest tehsil has a sex ratio of 535/1,000, the system of bride buying has become quite rampant in the last five years. Shahjahanpur’s block Bhawaal Kheda has several villages where, due to the low sex ratio, men have been buying brides from states like West Bengal, Orissa, Jharkhand and Bihar.

Coming back to the case of the brides out sourced , even if a woman is not bought and sold in the slave market, the racial memory of polyandry as in Draupadi it seems still persists. As the Hindu reports “ In some villages in Punjab, however, all the men in a household have access to the bought bride. She has no choice. Even if she is married to one brother, she must be available to all the other brothers in the house. Thus, polyandry exists, particularly in poor households where only one man can “buy” a wife. Sex selection has ensured that there are too few local women available. And poverty has dictated that only those with money can “buy” a woman. And with sex ratios touching 535 girls per 1000 boys in parts of the country, it may be that soon in places there may be no women to celebrate or observe the annual International Women’s’ Day that just went by.

Sunday, March 9, 2008

Saluting Youth

The other day, in accompanied my mother to her bank so that she could withdraw her pension from the bank (a nationalized bank!) she had a hip fracture some months back and although the bank was is within walking distance, she has lost the self confidence to make it to the bank on her own.

The first thing we had to do once we entered the bank premises was to obtain a token. This was the rule even though it was the middle of the month and the bank was empty. But the bank – though a public sector one has gone high tech and instead of the brass tokens that were handed out a decade or so ago (it has been a long time since I actually went to a bank!), they have installed a gadget where you press button and a piece of paper with the token number oozes out of the opening of the gadget which looks a bit like the credit card reading machines in shopping malls.

The man who attended to us at the counter was a man who looked as if it wouldn’t be too long before he himself would be queuing up where my mother was and some other guy would be sitting on the other side of the counter. I thought a man like that would be sympathetic to a senior citizen and her requirements but I was to be proved wrong. As soon as we had presented the cheque which my mother had spent all afternoon writing so that she would get it right, the elderly clerk observed that some piece of writing on the cheque was not visible enough and she should either re write and resign the cheque or write a fresh one.

When I took it back, my observation was that every thing was perfectly legible even though it was true that a portion of the cheque was a bit fainter may be than the rest. But it was certainly nothing much to make a fuss about. By the time I came back my notions about PSUs and the associated images were of course reinforced all over again, but more disturbingly, I came back with some freshly injected notions about age – and whether it was a true aphorism that you cant teach an old dog new tricks.

In my bank the atmosphere is distinctly youthy. There are a few cabins but though they have boards dangling over them, and they are more in the nature of large cubicles. Usually they are not occupied – the folks sitting there are out some where manning some counter dealing with customers whom the bank calls clients. The bank doesn’t seem to have any clerks or if they have, you cant make out who is one. The person who is sitting down with you to an answer a banking query today could be at the teller window tomorrow dispensing cash or in the back office the day after.

But of course this is not a comparison of banks, this is more about attitudes – the young and the old and some of that rubs off. Most of the nationalized banks are close to a hundred years old and most of the newsy private banks are a decade old. It is simplistic to say that they young are all good and great and the old are all cranky, hide bound souls but there is a distinct freshness with which one does business with the young.

But coming back to my bank when you grab one of these young people – they seem forever in a hurry and their attention span to listen is pretty limited, the gut reaction is to try and help – think out of the box if necessary but provide a solution. No they are not breaking any laws, but they are able to think unconventionally, call up a colleague on the spot on their mobile with you sitting right in front, and within minutes you have an answer.

This “can do” attitude is infectious and helpful. Sure the bank wants my business, but so does the public sector bank of my mum. But the old men and women out there have al the time to listen provided you get your tokens and got to the right counters and said your salaams but having heard you out, they will use their newly gained knowledge to only tell you that the problem you thought to be relatively simple is actually more complicated and twisted like knots.

May be I should go out too and make a pitch for younger leaders, parliamentarians and others to be given more roles and responsibilities in running the country; my small example at the bank tells me. The old have heaps of knowledge but they use their knowledge to not solve problems but tie up the whole thing in complicated knots. The young relatively speaking know less, but they use the little that they know to tackle the issues and give life a push forward.

As Asif Zardari was saying the other day about Kashmir; may be it is right to keep the issue in cold storage till all of the older generation who know every thing about the dispute first hand fade away and then let a later generation with less knowledge but perhaps better perspective tackle the matter dispassionately. May be he was right. And some advice for the common man - if you want less red tape and more banking choose a new generation bank; if you want a free course on banking laws and lack hobbies to pass your time – go to a nationalized one.

Friday, March 7, 2008

Migrants are Everywhere

In the midst of all the talk about the migrants in Mumbai and whether they are a burden or an asset to the city, I came to visit my mother in Kolkata. She lives in the Ballygunj area, once (probably still), an extremely elitist old money colony of the Bengali elite. After uninterrupted Left Front rule in the state since 1977 which effectively cut down industrialization and jobs for the educated Bhadrolok class, most of the young people left the city and today a large part of old South Kolkata is decaying buildings and elderly residents. The ambiance is unmistakably old world Bengali. So it was with some level of curiosity that my mother announced that a couple of girls who spoke Hindi had come to live as paying guests in the neighboring house.

In a culture, where people are classified as Bangali(Bengali) or O Bangali( non Bengali) with no grey shades in between, the arrival of the girls who would chatter away in Hinglish is currently still an amusing phenomena as they bring in life into an otherwise deadened community. But some disquiet is clearly there. What happens next? Some more girls coming in paying guests? Boy friends? Parties and Loud music? No one quite knows and every one is keeping their fingers crossed.

The only non Bengalis people in the area are aware of are Marwari builders trying to buy up their mansions and whose ostentatious life styles are looked upon with contempt and at the other end, the Bihari rickshaw pullers and laborers – generally looked upon in Kolkata with pity rather than anger. And yet can some Marwari families and Bihari laborers who have been in the city for generations and who speak the language and idiom with a rare fluency that will always elude the probasi(non resident Bengali) be called sons of the soil ? That question has never been attempted.

The situation in Delhi is far more interesting. The original people of Delhi – the folks who lived in Shahajanabad – Ballimaran, Chandni Chowk are today miniscule. The whole of that is captured within one parliamentary constituency out of Delhi’s seven. The others who are authentically sons of the soil are the outlying villages – Narela, Najafgarh, Badli, Samaipur and many, many others. These are and always have been villages and very rural except that the city has grown all around them and suddenly they find themselves befuddled.

The bulk of the people who live in Delhi today are migrants and a big portion are people displaced by the partition and who have come in from what is now Pakistan, gone into business, made money and bought property which they let out often by putting out classifieds in the daily newspapers. A typical transaction where the lesser is a migrant, the prospective tenant is also a migrant will reveal a lot. After scanning through the classifieds and short listing a few houses, a phone call is made to the landlord in the phone number listed in the advertisement and a time to get together is fixed.

Once the parties have got together and the opening pleasantries exchanged, the land lord asks the key question – what is you shubh naam? - Your good name please? A hush accompanies the question for in that question lie a hundred answers. If I am typical (I am not but that is a different matter…)my name will reveal to a waiting audience, not just that but my caste, my language, my religion, my dietary habits and possibly even my political ideology. It might even provide significant clues as to my occupation, my income and my life style. All this is largely based on stereotypes but when a dialogue is happening between strangers, pictures and images loom pretty large. The interesting thing about these interviews is that although a large portion of the land owners are North Indians and a big majority landed as displaced people needing housing in the post partition era, North Indians are at the bottom of the ladder when it comes to picking tenants.

Echoing Delhi’ Lieutenant Governor’s remarks most land lords believe that among migrants into the city , the South Indians are the favored lot as most believe that they are reliable law abiding, not aggressive and in general law abiding. Most advertisements are too discreet to say this upfront but some actually do so. The classification typically allows only North and South, so when I say I am from Bengal, there is momentary confusion but thus far I have passed the test. However I don’t know how Muslims with a name like Abdul Aziz would fare or a Christians with a name with Anthony Gonsalves would fare.

Eventually possibly xenophobia is ingrained in our genetic make up; but what we do differently in different places is respond more or less humanely recognizing that trade, travel and eventual migration is just as much part of the human genetic make up. Indians, who constitute one of the world’s largest Diaspora and have received varying levels of welcome at different places and even different times, should have assimilated lessons connected to migration and even reverse migration long ago. But we haven’t done that.

The Shiv Sena may say that Biharis are an unwanted lot every where and like Tejinder Khanna’s statement that maybe a politically incorrect truth. But perhaps it will take a man of Abdul Kalaam’s vision to make Bihar a more attractive place to live and work, so that a day may come when people or at least a section of them actually revert back to their place of origin. Isn’t that beginning to happen a bit – as India changes, many NRIs who went out in search of lucrative pastures outside, are now finding the grass increasingly greener this side of the fence ? Migration is a complex phenomenon- it will take a lot more than raving and ranting to make a rational sense out of it and draw up humane policies that will make it less necessary for people to migrate out into unwelcoming shores.

Wednesday, March 5, 2008

The World of Widows

When Deepa Mehta was making her film” Water”, one of the controversies that latched onto the book was the allegation of the renowned Bengali author and current president of the Sahitya Academy , Sunil Gangopadhyay alleging that the movie was based on portions of his well known work “ Shei Shomoy”, translated into English as “ Those Days”. That may not be true because the novel is set in the late nineteenth century whereas Deepa Mehta has set her story in the midst of India’s freedom struggle with John Abraham playing a freedom fighter.

However the fact really is that Deepa Mehta could well have chosen to base her film in the 21st century and not in the 20th where she did or in the 19th where Gangopadhyay’s novel is set and frankly little would have changed; there is little that would have changed. The Bengalis of that day packed off their widows then to Kashi for a life of abstinence, prayer and penance while the men lounged in pleasure gardens. The widows, many of them child widows, did not have to worry about prayers – there are and were men in plenty to “take care” of their needs. Such scenes are shown in “Water” as well as in Sunil Gangopadhay’s novel.

I guess that the opposition that Deepa Mehta faced when she made the film would have been a bit muted if these were facts of the past because it is easy to say to others that it was some thing that happened in then…. We are modern today and we have moved on and these child widows and women living lives as depicted in the film aren’t lived in any more. That would have been a nice position to be in except that we aren’t. The sad fact is that in spite of untiring efforts of reformers like Ishwar Chandra Vidyasagar and his friends and many others subsequently, widows as well as child widows abound and exist and not very far from India’ National Capital—may be about 150 KM at the most.

Vrindavan is the town most people have heard of because of its association with the childhood of Krishna and the many other associations with his life. However not many my know that the Vrindvan of Krishna was a town in ruin by the middle ages and it was more or less recaptured by the jungle by the Bengali Vaishnavite mystic , Sri Chaitanya Maha Prabhu, who in 1515, more or less founded the town that we know today as Vrindavan.

The fact that the Vrindavan rapidly became a place of pilgrimage where the wealthy feudals ventured once a year to pay obeisance to the deities and the added advantage of being even further away from Bengal from Kashi meant that Vrindavan soon became a place where one could dump one’s widows. Many mansions built by the elite of the day, now mostly in ruins and decaying by the day are still to be seen in the town and it is possible to imagine that as in Varanasi the men of the day came to Vrindavan too with their retinues for pleasure as much for piety.

In the movie, apart from an opening reference to ‘the woes of widows’ in the Laws of Manu traditions regarding widows are not fully explained outright but unfold within the story. The widows live lives of enforced asceticism, atoning for the bad karma that has that has killed their husbands. Their unadorned white saris and shaved heads mark them for all to see. In life too , there is often little to differentiate the reel and the real as perhaps symbolized by the widow’s white worn by ” chuhiya”, the child widow in “Water” and the scores of widows like the ones in the picture above who wander the streets of Vrindavan, much like cows who incidentally fare better than the widows in terms of board and lodge with traders funding plenty of gaushalas in the town. I wonder why Sunil Gangopadhyay got agitated that Deepa Mehta lifted her script from ” Those Days”. A man of his eminence should have known better. A lot of abominable things that we thought only happened those days are still happening “These Days”.