The migrant worker is also a woman

Column for Mathrubhumi (translated into Malayalam)

Link:
https://english.mathrubhumi.com/features/specials/even-in-the-covid-19-migrant-narrative-women-don-t-count-1.4777812

The image of the scattered rotis on the railway track near Aurangabad, Maharashtra will come back to haunt us for a long time, even after this Covid-19 crisis ends. In the early hours of May 8, a goods train mowed down sixteen migrant workers, who were walking from Jalna to Bhusaval, a distance of 157 km, to catch a train to their home state of Madhya Pradesh.  They were resting on the train tracks and fell into a deep sleep, one from which they never woke up.

Most of them were young men. In fact, the face of the migrant worker that we have seen on TV screens and in photographs, as thousands of them make their weary way home, is that of a man. Occasionally, you see women and children when entire families leave the city.

But are we missing something here?

In fact, many women are also migrant workers. The poorer amongst them work in brick kilns, as farm labour or on construction sites. The women, who have a basic education, work in the service industry in cities, as sales girls, as beauticians or as waitresses.  There also many young women who are employed in several small-scale industries such as the garment sector, where they live in hostels close to their place of work.

We must also not forget Northeast India, from where thousands of young men, and women, travel a long way to work in our bigger cities. While the workers on daily wages, such as those we see desperately finding a way to return, are the more visible in the current exodus of migrant workers, these young people from the Northeast are equally stressed. They also have no income, no money to pay their rent, and no transport to return home.

Whether women move to the cities accompanying their men, or they move on their own, they face the same struggles. They have to figure out how to survive, often in a hostile environment if they happen to be a racial or religious minority. Young women, in particular, living away from their homes, are vulnerable to sexual violence, as much or even more than what any Indian woman faces if she ventures out into the public space alone.

During these times of Covid-19, the young women from the Northeast, who in any case are harassed because they look different, have been especially targetted. There have been several deplorable incidents of women being spat upon, even assaulted, and called "Corona" because of their looks.  This represents the worst of racial and gender prejudice.

Several economists have pointed out that we are wrong to presume migration is only from villages to big cities.  People also move from smaller villages to the bigger ones, from villages to small towns, and also from the smaller towns to the big cities.

The work of the women who migrate, or the ones who stay back, is in many ways the same. If they move with their husbands, they still have to ensure that there is fuel and water in the temporary shelters where the poorer migrant workers live. Back in their villages, they are burdened with the same tasks as they wait each month for the remittance to arrive.  In either case, even if they find work and add to the family income, it is barely enough for survival. At a time like this, when there is no income, how will these people survive, irrespective of whether they stay back in the city, or eventually make it back to their homes?

This is a story that has yet to unfold, one that will have long-term consequences on the health of the more vulnerable amongst them, namely the women and the children.

This crisis has exposed much about our society

My column for Mathrubhumi (translated in Malayalam)

Appeared on Sunday March 29, 2020

https://english.mathrubhumi.com/features/social-issues/covid-19-measures-should-also-acknowledge-mumbai-s-poor-1.4673545

 She lies on the pavement, every part of her body covered with a thin sheet. I pass by her every day.  This is Uma, a child of the street, who will turn 18 next month.  At the age of 16 she gave birth to a little girl, who will turn two next month. 

As our world staggers with the reality of a deadly virus that is crossing borders and regions, spare a thought for those like Uma and her child.  She has no walls that can provide her social isolation.  She has no water with which to wash her hands. And she has no confidence to approach a health provider for fear she will be turned away.  And this, in India's richest city, Mumbai.

The crisis the world, and India, face with the steady spread of Covid-19, has exposed much about our societies.  In India, above all it has exposed the callousness of the entitled and the weakness of our public health system.

The fact that the virus came to India because those with the money to travel abroad brought it in has still not sunk in.  Every day you read stories of people who have travelled refusing to accept that they should voluntarily stay at home and not infect others, that they should get tested when required, and that they should accept isolation if tested positive.

Instead, what we witness is many who are simply not following this protocol.  As a result, even though so far we are being told that there is no community spread of the virus, do we really know?  Already in Mumbai, a domestic help tested positive because she works in a house where the owner, who had just returned from the US, tested positive.  Multiply such instances and you get the picture.

And then, the women who work as domestics live in over-crowded urban settlements, where dozens occupy tiny spaces, where water is scarce and sanitation inadequate.  The idea of  "social isolation" in such a place is unimaginable. 

How long before the infection spreads, if it has not already done so?

I ask because even as we concentrate on limiting the spread of infection, and increasing our capacity to test for Covid-19, we also need to address the unchanging reality like the living conditions of the urban poor that make the spread of infection virtually inevitable.

The most vulnerable are those without any shelter, like Uma.  She is part of a family of waste pickers.  Every day, they sort dry waste.  They touch paper, cardboard, plastic and other forms of waste that would have been touched by many hands, including those with the infection.  I haven't heard of any plan to keep these citizens of our cities safe from infection.

Instead, middle class housing societies are talking of ways to shut the poor out, in the belief that they are the ones who carry the infection. Typically, they refuse to accept that it is their class that has contributed to the spread of the infection. Not just accidentally because they happened to be in the countries that had already been stung by Covid-19.  But by refusing to take the necessary precautions, such as social isolation and testing to ensure that no one else gets it.

If there is anything I wish at this time of death and disease it is that those with wealth realise that if we have a system that works for the poor, it will work for everyone.  On the other hand, no privatised health system can prevent the spread of a deadly virus because it will automatically exclude those who are the most vulnerable, people like Uma.

Out in the open

The Hindu, Sunday Magazine, October 12, 2014

Absence of sanitation facilities for women during disasters enhances their vulnerability. Photo: AP

The absence of sanitation facilities for women during disasters enhances their vulnerability.

Last month, while our attention was diverted by what our politicians were doing on foreign shores and at home, tragedies on a massive scale were being played out in many parts of the country.

Besides the devastating floods in Kashmir last month, vast swathes of the rest of India have also been inundated by floodwaters. Odisha, Bihar, Assam and Meghalaya have seen some of the worst flooding in years. For these states, floods are an annual phenomenon. But this year they have been worse and in places where the waters never advanced with such force in earlier years.

So even as the usual tamashas and tirades occupy our news space, spare a thought for the women, men and children in these states who are still struggling. Even as I write this column, an estimated four lakh people in Assam and Meghalaya, spread over 4,446 villages in 23 districts are homeless or badly affected by the floods. Thousands of people remain in relief camps because they cannot go back to their villages.

In Odisha last month, rising river waters submerged thousands of villages in 23 of the 30 districts in the state. In Bihar, too, the flooding has been relentless, spreading destruction, destitution and disease.

While the reports in the media on these states are few and far in-between — you have to make a determined effort to mine out the news from mainstream Indian media — the few reports that have appeared make heart-rending reading.

One report that I found particularly touching appeared in The Hindu on August 27, 2014, under the headline, ‘Women fight shame in flood hit Bihar’ (http://www.thehindu.com/news/national/other-states/women-fight-shame-in-flood-hit-bihar/article6356043.ece?homepage=true). It quoted women in Bihar’s Supaul district talking about the particular challenge that they face as women in the wake of floods.

A woman in her thirties was quoted saying, “Poor women like us face more problems to relieve ourselves when floods force us to flee our villages. It is our fate. No one can imagine this except those like us.”

Another older woman said, “We have no option but to relieve ourselves in the open by closing our eyes and minds to the hell-like situation.”

What they are talking about is the pathetic absence of any sanitation arrangement for women during such disasters. You might argue that in any case many of these women would not have toilets and are therefore used to open defecation. But can anyone imagine what this woman means when she says they close their “eyes and minds” when they go out to relieve themselves in a flooded landscape?

Why, people would legitimately ask, should we make such a fuss about women’s problems at such times when everyone — men, women and children, as well as the elderly — are affected? I do so because in many ways women’s vulnerabilities are enhanced at such times. If they confront a daily challenge of sanitation, this is compounded during floods and other disasters. Yet, when relief measures are put in place, the particular needs of women are often overlooked.

In a powerful article that Assam-based journalist Teresa Rehman wrote after the 2010 floods in her state (infochangeindia.org/environment/features/sanitation-in-the-time-of-floods.html), she quotes a woman called Salma Begum from Sonitpur district: “Sometimes we have to seek permission from the owners of a dry patch in order to defecate. Most often we have to do it discreetly, on other people’s land, as it becomes difficult to control oneself. Sometimes, during the floods, we starve ourselves so that we do not need to defecate.”

In this instance, women like Salma were beneficiaries of the government’s Total Sanitation Programme, in particular low-cost toilets. Yet, one flood, and everything including these toilets are washed away. Women like her are then left with no alternative but to revert to the age-old practice of open defecation, with the added complication of not finding a dry spot.

Floodwaters are indiscriminating. They sweep away everything and everyone that comes in their way. But for the survivors, the story varies greatly depending on class, caste and gender. And this is where the voices of women like Salma from Assam or the women from Bihar must be heeded. The process of relief and rehabilitation must necessarily be ‘gendered. The absence of toilets is a woman’s problem in a very specific way.

Sweeping our streets clean is all very well but surely cleanliness must mean that women do not need to live through ‘a hell-like situation’ on a daily basis.

(To read the original, click here.)

The Hindu, November 16, 2012

OPINION » OP-ED

November 16, 2012

Conversations across the LoC

KALPANA SHARMA

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The HinduTALKING PEACE: Women crossing the LoC at the Kaman Bridge on November 5. Photo: Special Arrangement

TOPICS

diplomacyIndia-Pakistan
international relations
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The perception gap on the condition of women on both sides was evident at the latest intra-Kashmir dialogue

November 5, 2012. Women stood on both sides of the Line of Control on the Srinagar-Muzaffarabad crossing in Kashmir. As they waited, it began to drizzle. Officials on both sides seemed to be waiting interminably for the other side to open the gates. Finally, the waiting ended and for the first time in the troubled history of Kashmir, 10 women from the Kashmir Valley, Jammu and Ladakh walked across the Kaman bridge to talk about peace with their counterparts on the other side of the LoC.

A journey that took them only a few hours was many months, almost a year in the making. Since 2007, women from both sides of the LoC had met in two Intra-Kashmir Cross-LoC Women’s Dialogues facilitated by the New Delhi-based Centre for Dialogue and Reconciliation (CDR). The first meeting was held in Srinagar, the second in Gulmarg in 2011. On both occasions, the women from across the LoC had to undertake a four-day journey across the Wagah border.

This year, the newly-formed AJK Women for Peace Organisation based in Muzaffarabad decided to hold the dialogue. The women they invited from Jammu and Kashmir insisted they would only attend if they were permitted to travel across the LoC.

Misconception

What should have been a routine matter in fact took months of intense negotiation. There is a misconception on both sides of the LoC that the 2005 confidence-building measure (CBM) of opening the Muzaffarabad-Srinagar road was only to facilitate the meeting of divided families. In fact, there is no such specific reference in the agreement and it is open to Kashmir residents on either side. Yet, because of this assumption, only those wanting to visit family on the other side could seek permits.

On November 5, when the 10 women crossed over they set an important precedent that could open the way for many more intra-Kashmir dialogues.

The cynics would say, what of it if the larger political issue of Kashmir remains unsettled. Yet, a prerequisite for peace between countries and between regions must necessarily be a meeting of minds between the people. In the absence of routes of communication, how can there be any conversation that could presage peace?

This is what the three dialogues between women have been attempting. It is not as easy as it sounds. Apart from the logistical problems, there is a real perception gap.

If you say “Kashmir”, “women” and “suffering” on the Pakistan side of the LoC, the only response is the suffering of women on the Indian side. There is an automatic assumption that just because there is no conflict of the kind seen on the Indian side, women across the LoC face no problems. Indeed, even during the three-day meeting in Muzaffarabad, which still bears the scars of the devastating 2005 earthquake, this perception gap was evident.

Some of it is inevitable as there have been campaigns, studies, books and reports in abundance about the many ways in which women in Jammu and Kashmir have suffered since the beginning of militancy in 1989. In contrast, there is little by way of similar studies about the impact of conflict on women on the other side of the LoC. As a result, there is a tendency to focus entirely on women on the Indian side. And many of the demands in the consensus statement reflect this, such as a call for demilitarisation and setting up of a Truth and Reconciliation Commission.

The delegation from Jammu and Kashmir, however, repeatedly asked that they be informed of the situation of women on the Pakistan side of the LoC. Some information did come through but not nearly enough.

For instance, there was practically no mention of the problems women face in the Neelum valley. When Indian and Pakistani troops exchange fire — despite the 2003 ceasefire agreement, violations continue — the families in the Neelum valley bear the brunt. On the Pakistan side, this is also a poor region. Many of the men have migrated to jobs in Pakistan’s urban centres or the Gulf. The women left behind are displaced for varying periods, their isolation from the rest of the region denies them basic services such as health care, and their poverty increases their vulnerability.

There was also silence about the thousands of women who crossed over in the 1990s and live in camps or have merged with the local population. These displaced families are being given some relief according to a recent study but most of them, particularly the women, want to return to their homes in India. Only a small percentage living outside the camps did not want to go back.

Still, at the end of the three days, this difference in perception was set aside because the main issue was not comparative suffering but how to address the needs of women on both sides of the LoC.

The overwhelming demand was for easing travel and communication between the two sides, including a special appeal by the women from Baltistan, Gilgit and Ladakh for a crossing that would facilitate their travel. Almost all the women, from both sides of the LoC, had heart-rending stories to tell about the price their families have paid because of the impenetrable line dividing the region. And even as they talked of this, there was joy as two sets of cousins “discovered” each other from among the participants.

Happy experience

The most remarkable experience was that of Effat Yasmin, an economics professor from Kashmir University. During a casual conversation during a coffee break with Sajda Behar, a section officer in the education department in Muzaffarabad, she discovered that their mothers were first cousins. In fact, Sajda had applied for a permit to travel to Baramulla in 2005 and only got it this year. She is yet to make the journey.

Like Sajda’s long-pending journey, the journey to peace is complex. This might have been a women’s dialogue. Some of the issues were specific to what women experienced. But you could not escape the politics underlying the Kashmir issue. The women who talked know this and do not deny it. But they believe that they too should have a role in formulating peace because they have carried the burden of conflict.

(The writer went to the meeting in Muzaffarabad on the invitation of the Centre for Dialogue and Reconciliation.)

Unequal unions

The Hindu, Sunday Magazine, May 27, 2012

Taking the plunge: Wishes fulfilled? AFP PHOTO

Why should women obliterate their personalities, their lives, once they get married?

Last week, a young man, 24 years old and a graduate, introduced me to his new bride. He comes from a tradition-bound Maharashtrian family. The couple had completed their round of temples in the city. And I was told that after a month, the bride, a girl born and brought up in Mumbai like the bridegroom, would be dispatched to a village in the Konkan to help his mother with the housework.

The young man introduced his wife as Tapasya. I asked the young woman her name. She said it was Usha. “But ‘they' have changed my name”, she said. And both seemed to accept this unquestioningly. As if it was the most natural thing to do. So the girl loses not just her last name but also her first name. In other words, she becomes a new person, apparently with no connection with her past.

This name-changing custom, followed only in some parts of India, is at the extreme end of the continuum that ordains that a woman's identity and independence ends the day she takes her marital vows.

The change of name might seem a minor issue. But it is what it represents that needs to be questioned. Why? We need to ask that. Is it essential? Will it make a difference to the quality of the marriage? Will it make a difference to the lives of the young people entering into matrimony? And why only the girl? Perhaps both ought to change their names so that they start their lives on a completely clean slate!

First in France

A stark contrast is France where the new woman in the Presidential Palace in France, is the first unmarried woman to live there alongside the man elected as President. On May 6, France voted in Francois Hollande of the Socialist Party as President. With him came his “First Lady”, Valerie Trierweiler. The two are not married and as of now have no plans to do so.

Ms. Trierweiler has been married twice, divorced twice and has three children. Mr. Hollande has four children from a previous relationship. And the French do not think this relationship is worth even a comment.

What is interesting about this is not just the non-marital arrangement. Or the ease with which the French seem to accept it, but the fact that Ms. Trierweiler, a 47-year-old political journalist with two decades of experience, has chosen to continue in her profession. She says she has no plans to be financially dependent on her live-in partner. “I haven't been raised to serve a husband. I built my entire life on the idea of independence,” she is quoted as saying in the New York Times.

The idea here is not to advocate an end to the institution of marriage or to debate whether live-in relationships are ideal. But the example of the independent Ms. Trierweiler is interesting not just because she is with the President of France, but because their relationship and her attitude towards it highlights an important question on women and marriage.

Is it essential for a woman to obliterate her personality, her life, once she gets married, or when she enters into a publicly-acknowledged relationship with a man? Does she not have the right to remain her own person?

Is there something sacrosanct about women subsuming their lives in that of the men they marry or live with?

Surely this is one of the reasons girls count for so little in our society.

In India, we are not encouraged to ask such questions. In fact, questioning in general about anything is actively discouraged. Children are firmly told not to be pesky if they question. Girls are put in their place if they do — or called “Maoists” as a Kolkata student was branded by West Bengal Chief Minister Mamata Banerjee during a recent television talk show.

In our educational institutions, “note-taking” is the norm, not argument and questioning. As a result, there are scores of so-called customs that continue unquestioned by most people except a few who are inevitably called “rebels”. But women's status within marriage is most certainly an issue that needs constant questioning.

Expected sacrifices

Some of this is changing as more girls get educated and follow careers. Many customs have been questioned and have been modified. Yet, the expectation that the woman will automatically and willingly “sacrifice” her independence, her career, her personality, and even her given name at the altar of marriage somehow remains sacrosanct.

What is even more perplexing is how, despite a so-called “modern” education, the majority of girls continue to accept without question that their years of freedom, or independence, are limited to the time they get married.

Some edifices are too solid, too difficult to bring down. But perhaps we can begin by training our young people to ask: Why?

(To read the original, click here )

You too Mumbai?

The Hindu, Sunday Magazine, December 25, 2011

 

Changing times: A separate ladies coupe in the Mumbai suburban train. Photo: Shashi Ashiwal

A recent survey reveals that women don't feel safe anymore even in Mumbai, a city where women have been part of the public spaces for a much longer time.

In October, Mumbaikars woke up rather rudely to a reality that millions of women living in that great city have to live with every day — that of sexual harassment in the public space. The incident that caught media attention took place outside a restaurant in suburban Mumbai. A group of friends, men and women, stepped outside the restaurant. When one of the young men objected to lewd remarks being directed at a woman in their group by four men who were hanging around, it first appeared that the matter would end there. Instead, these four returned with reinforcements, set upon the men in the group, killed one, Keenan Santos, on the spot and grievously wounded another, Reuben Fernandes. The latter died in hospital.

The incident shocked the city. Was it safe no longer for women to go out even with men friends? Was it unwise for men to intervene if women are harassed? And why did none of the people who stood by and watched intervene or call the police? Could this really be happening in Mumbai, a city where women feel safer than they do in practically any other city in the country?

Shocking findings

A recent survey initiated by the women's resource group Akshara in Mumbai along with Hindustan Times and market research organisation Cfore has put some concrete numbers behind this unfortunate but emerging reality in the city, that women are not as safe as they thought they were. Of the 4,255 women interviewed for the survey, 99 per cent of them said they did not feel safe. What has changed to make so many women feel unsafe?

The public transport system in Mumbai is still better than in most Indian cities. Between the BEST buses and the local trains, over 80 per cent of the city's population travels. You would not know this if you saw the traffic jams at all times of the day. Yet, even people with cars and two-wheelers prefer Mumbai's public transport system. It is certainly a better and more pleasant option than spending long hours on the road. It is by no means as comfortable as the Delhi Metro. But the local trains especially are efficient and transport millions of people each day, way beyond their capacity.

Mumbai's local trains have separate women's compartments that do help in minimising the chances of sexual harassment on the trains. But in the buses, although there are a few seats reserved for women, there is no such separation between the space occupied by the men and women. It is here that women report the maximum amount of harassment by way of men rubbing against them, feeling them up etc. The survey revealed that 46 per cent of the women reported being sexually harassed. However, unlike Delhi, where women travelling on buses are afraid to shout or object to harassment because other passengers rarely support them, in Mumbai by and large women do get such support.

Apart from the buses, on Mumbai's streets too women report being touched, followed and subjected to lewd remarks. After dark, in areas such as the pedestrian underpasses, they feel particularly vulnerable. Girl students find that stepping outside their colleges is often hazardous as men are waiting to ply them with unwanted attention.

Changing experience

Why should any of this information come as a surprise? It does because the perception that Mumbai was safer for women was based on their lived experience. Ask any young woman who has grown up in Bangalore, or Delhi, or even Chennai about the sense of liberation she feels when she moves to Mumbai. The principal reason is the ease and safety of travel, even at late hours of the night. This gives them a sense of freedom, of choice, that they do not have in places where their movements are restricted because of the absence of safety after dark or the inadequacy of transport.

Women have used the trains and buses in Mumbai for decades. They have been in the public space, working in offices, selling wares on the streets, running small businesses, working in restaurants and in a myriad other jobs. So women have been an integral part of the public space in Mumbai for a much longer time than in more conservative cities in the North, for instance.

If despite this, the majority of women say they feel unsafe, then the reasons need to be considered and addressed. The steps taken to deal with this would be relevant not just for Mumbai's women, but for women in other cities as well.

One of the telling statistics in the survey was that 63 per cent of the women who faced harassment never told their families. Worst still, in a city where women have counted on support from men if they objected, 78 per cent of the men interviewed (776 men were part of the survey) admitted that they did not help.

What should be done? It is clear a stronger law is essential to deal with sexual harassment — at the workplace, in educational institutes and in the public space. Women should not feel that they have no option but to remain quiet. But even if there is such a law, it can only be effective if women feel it is possible to use it. Many cities, including Mumbai, are now beginning to realise the importance of not just laws but making it easier for women to approach the law enforcers. Hence in Mumbai there is one number that women can call if they are attacked or in need of help.

Larger context

But even a stronger law, better policing, a more responsive criminal justice system will not suffice. What is happening to women in our cities is the result of a growing culture of impunity — where you know you can get away with breaking a law regardless of whether it is a minor misdemeanour, like driving through a red light, or more serious crimes like defrauding public funds or even murder. In such an atmosphere, not just women but anyone who is vulnerable will feel unsafe.

At a time when people's protests seem to be making some impact on public policy, perhaps women too have to launch protests that demand an equal right to safety in public spaces. “Freedom from sexual harassment” is a campaign that everyone would support. Akshara has launched a Blow the Whistle campaign, urging women to shout out if they are harassed. College students in the Mumbai are conducting a Zero Tolerance Campaign, the Chappal Marungi and Freeze the Tease campaigns. These are positive steps. Women cannot afford to sit back and be silent victims.

(To read the original, click on the link)

Too bitter a pill to swallow

The Hindu, Sunday Magazine, June 12, 2011

THE OTHER HALF



Falling ill is precarious business anywhere in the world. But in India, if you are poor, or live in a village, overcoming even routine illness can sometimes become an insurmountable hurdle. First, there are few health facilities within reach. Those that exist are ill equipped. Doctors don't come. Medicines are not available. Even if you somehow make it to the nearest district hospital, there is no guarantee that you will be treated. And if you seek private care, something 80 per cent of Indians are forced to do, you will end up permanently in debt. Most Indians have no health insurance.

Better than nothing

In such a situation, if someone approaches you and says they will actually pay you if you agree to take a new treatment for an illness that you have, most poor people would agree. What harm can it do? Often doctors, in whom the majority of patients put their complete trust, endorse the trial.

But harm there can be, and is possible from participating in what are ‘clinical trials' where new drugs are tested for their efficacy on humans. And despite regulations, codes of ethics and monitoring, every now and then we hear of people who die during these trials.

Last year, an intervention by a women's health rights group, SAMA, exposed the manner in which a study, where tribal girls between the ages of 10-14 years in Andhra Pradesh and Gujarat were given the Human Papilloma Virus (HPV) vaccine that prevents cervical cancer, went horribly wrong. Seven girls who received the vaccine died. Their parents believed the reason was adverse effects of the vaccine (see The Hindu, Sunday Magazine, April 18, 2010). The SAMA report prompted the Central government to set up an inquiry committee to look into the study and in the meantime asked that it be suspended.

The report of the government committee appointed on the HPV vaccine study was released in February this year but became public only a few weeks ago. Although it concludes that the seven deaths were “most probably unrelated to the vaccine”, it also adds that “the cause of death in all the cases cannot be established with certainty.” And as for violation of ethical norms, it observes “several minor deficiencies in the planning and conduct of the study”.

However, it is these so-called “minor deficiencies” that can sometimes make the difference between life and death for people who are already vulnerable. In the case of these tribal girls in Khammam district in Andhra Pradesh and Vadodra district in Gujarat, the deficiencies included the absence of “informed consent” (the consent forms were signed by hostel wardens instead of the parents of the girls being informed and their consent sought). Furthermore, a proper procedure to monitor the health of these girls for adverse effects was not in place. This is particularly important as most of these girls were already undernourished. The committee's report notes that there was no uniform reporting system for Adverse Events Following Immunisation (AEFI), which included nausea, vomiting, diarrhoea and abdominal pain as well as giddiness, jerky movement and neurogenic shock. Worse still, the girls had no health insurance cover for treatment in case they fell ill on being vaccinated.

Consent by proxy

Although the committee does not indict either the drug company or the organisation that conducted the study, and also concludes that the inclusion of girls between the ages of 10 and 14 was justified given the nature of the drug, it has questioned the “legality and morality” of the circular from the Andhra Pradesh government permitting hostel wardens and head masters to sign the consent forms on behalf of these girls without informing their parents. It has gone further by stating: “The committee stresses that everyone shall desist from research on tribal population, unless of specific benefit to them.”

The HPV vaccine controversy draws attention to one aspect of clinical studies and trials, how vulnerable groups are roped in without proper consent and without health support in the event of problems. In this case, the connection between the vaccine and the deaths could not be conclusively established. But even where it is, the companies try and get away without paying compensation.

On June 6, newspapers reported that the Drug Controller General of India (DGCI) had summoned nine drug companies who conducted clinical trials that led to the death of 25 people. According to the DGCI records, last year, a total of 670 people who were part of clinical trials died. But the death of only 25 could be linked to the drugs. Of these, only five families were compensated within a range of Rs. 1.5 to 3 lakhs.

This news item gives us a small window into the ‘industry' of clinical trials in India that is worth millions of dollars. It has been clear for some time that these trials need to monitored much more closely. Some of this kind of scrutiny is taking place. Apart from official bodies like the DGCI, there have also been some independent studies. One of these, by Sandhya Srinivasan titled, “Ethical concerns in clinical trials in India: An investigation” for the Centre for Studies in Ethics and Rights, is particularly instructive. Ms. Srinivasan has looked at the trials of three drugs, a drug to treat breast cancer and two drugs for psychiatric conditions. Many of these drugs are expensive and it is tempting for those with terminal conditions, like cancer, to agree to be part of such trials. The report reveals the many loopholes in the rules and regulations that allow drug companies to appear to be sticking to the letter of the law while violating the spirit.

Going unnoticed

The ethics of human clinical trials is a complex subject that requires more space to discuss than is available in this column. But the two developments – the report of the government committee on the HPV vaccine and the DGCI's intervention on the question of compensation for trial related deaths – illustrates how so many things remain hidden until there is a crisis, or some independent group investigates. The problems remain hidden particularly when the people involved are the voiceless, like the young girls of Khammam district. Had it not been for groups like SAMA, perhaps no one would have ever known about what was going on.

This is not to say that new drugs should not be developed to combat disease. No one questions the need to test these on humans before they are licensed for use. But the process of certification of their safety should not lead to death or disability of those who are part of the trials. Nor should the precondition of consent be abused the way it was in Andhra Pradesh. And nor should the financial vulnerability of the majority of people in India when faced with a health crisis be cynically exploited for such trials. The onus is on the manufacturers of these drugs, who claim they are producing them to save human lives, to actually do so.

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Different and able

The Hindu, Sunday Magazine, May 1, 2011

THE OTHER HALF

KALPANA SHARMA

To be a woman, and to be different or disabled is to carry a heavier baggage of discrimination and violence. Yet, there are inspiring role models…

Photo: Rajeev Bhatt 

The sky is not the limit:Deepa Malik, a paraplegic, has won national and international medals in swimming, shotput and javelin and participated in the formidable motor sport event, the Raid De Himalaya.

Two women, both widows, were beaten to death on April 18 in Ranila village, Rohtak district, Haryana. Their crime? They were suspected by Naresh Kumar, the nephew of one of the women, of having a lesbian relationship. 

According to newspaper reports, Naresh suspected the 34-year-old Suman of having an affair with his 35-year-old aunt, Shakuntala. So he dragged Suman out of her house, battered her with a stick until she fell dead and then went to his aunt's home and killed her as well.

What is it that fuels such terrible intolerance? Women are victims of violence, we know, but are women who make choices that are not the dominant ones even more vulnerable? Are women, who out of no choice of their own, disabled – physically or mentally – prone to a much greater degree of violence? And what about those who are born male but believe themselves to be female, the transgender? How do they survive in a society like ours that exhibits such high levels of intolerance for anyone who does not fit the dominant norm?

Gendered realities

These were some of the issues addressed at a recent meeting in Kathmandu, Nepal, organized by CREA ( www.creaworld.org) and intriguingly titled “Count Me In”. Women who do not fit dominant societal norms are counted out, eliminated from our consciousness, virtually rendered invisible. As a result, if they are victims of violence, no one cares or even acknowledges that this is also a reality in our gendered world.

One of the more fascinating areas that the conference explored was women and disability. Much is written and discussed about disability in general. Even the census now counts the disabled. But how are disabled women treated in a country where even able women have to struggle to be recognised as human beings with equal rights?

Anita Ghai is a striking looking woman in a wheel chair. She teaches psychology in a Delhi college. In a paper on ‘(Dis)ability and exclusion', Ms. Ghai touched on a central issue concerning disabled women that we rarely address: their sexuality. It is assumed that if a woman is confined to a wheel chair, or is impaired in other ways, she is de-sexed or asexual. Can she not have sexual feelings? Can she not be the victim of sexual violence?

Ms. Ghai recounted several stories that graphically portrayed the lives of disabled women. Meena, for instance, who was afflicted by polio as a child, describes how she hated going to school because everyone called her langri (cripple). When she wanted to go to the toilet, the teacher would refuse to let her go. By the time the teacher conceded, it was too late for Meena to make it from the classroom to the toilet because of her disability. Meena had to hear taunts from the other children and could not understand why the teacher did this.

Ms. Ghai recounts other, more horrific, stories. Of disabled girls being left with male relatives in the belief that they would be ‘safe'. Instead, the girls suffered sexual abuse but were unable to talk about it. She also writes about how while disabled men are able to get ‘normal' women as wives, disabled women have no such luck. If they get married at all, it is with tremendous difficulty that a match is arranged. One woman, for instance, decided that even if marriage was not possible, she wanted to adopt a child. But when she approached an adoption agency, she was told that she was ineligible.

The conference also brought together women who have overcome all kinds of disability and refuse to get cowed down. Amongst them were the arresting Jeeja Ghosh, Head, Advocacy and Disability Studies, Indian Institute of Cerebral Palsy, Kolkata. If you listen carefully, you can understand every word that Jeeja speaks. She does so with great difficulty, but also with great passion. Speaking on the issue of disability and sexuality, Jeeja pointed out that “Women with visible physical impairments, who fail to measure up to the society's standards of a perfect and beautiful body, are marked as ‘undesirable' depriving them of their feminine identity. Thus they are socialised in a culture of asexuality.” She argues that this results in ‘internalised oppression' where the disabled woman herself begins to believe this, resulting in a lowered self-esteem.

More vulnerable

Women with disabilities face greater violence not only than women in general but even compared to men with disability. Renu Addlakha of the Centre for Women's Development Studies, New Delhi, described the many types of violence that disabled women face within the family home. These include physical violence and verbal abuse from the caregivers, lack of respect and a tendency to be treated like children even when they are adults, deliberate neglect — such as not feeding them in time, or giving them medication, confinement or being kept out of view of visitors to the home, drugs added to their food to keep them quiet and if they are angry, or assert themselves, labelling them as mentally unstable.

Humbling experience

Meeting women like Jeeja, or the wonderful Kanchan Pamnani, a corporate lawyer who lost her sight gradually but has not lost her will or her determination to be independent and to fight for the rights of others like her, was humbling in more ways than one. Kanchan, for instance, has successfully fought for the sight impaired to have the right to open and operate bank accounts, something that was not permitted earlier. As a lawyer, she has looked at existing laws, those dealing with disability but also others — such as labour laws — to see if they address the issues of disability. For instance, she believes the Copyright Act needs to allow exemptions for the visually impaired who need to reprint texts in Braille, or convert them into audio books.

Being conscious of these issues forces us to accept that there are other dimensions to violence against women — mediated not just by caste, class or community but also by disability. Women who are different out of no choice of their own, as with the disabled, or because they have made a choice, as with lesbians, are also citizens of a democratic country, and therefore entitled to the rights and privileges accorded every other citizen. Our collective gaze towards them determines the extent to which we can be called a tolerant and civilised society.

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A tale of contrasts

The Hindu, Sunday Magazine, March 6, 2011

THE OTHER HALF

Are women better off today, or worse off? The answers, like most things in India today, are contradictory.

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We should not delude ourselves into believing that a few women making it to the top ... means that Indian women have overcome all barriers.

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Flying high: Sub Lieutenants Seema Rani Sarma and Ambica Hooda, the Navy's first airborne tacticians.

On February 26, the front pages of many newspapers carried a report about a man who delayed a Delhi-Mumbai flight because he did not want to be flown by a woman pilot. After everyone had boarded, and the plane was ready to take off, he heard during the routine announcements made before take-off, the name of the captain. It was a woman! He was adamant that he wanted to get off and reportedly told a fellow passenger, “I don't want to die! She can't handle her home, how will she handle a plane.”

The drama ended after several hours when the passenger was persuaded to apologise to the woman pilot and to the women on the crew. The airline explained that the passenger was of “unsound mind”.

Shared perception?

So we can laugh it off. A cranky passenger holds up a flight. Does that mean the majority of men fear for their lives if a woman is piloting a plane? Probably not. Yet, do men secretly ask the same question: Can she really handle a plane, a business, a bank, the stock market, a newspaper, a TV channel, the defence department, the police etc etc?

In this day of political correctness, few voice such apprehensions openly. There are always the exceptions. Like Maharashtra Industries Minister Narayan Rane. Speaking at a seminar on women and politics in Mumbai on February 24, Rane took the bull by the horns and stated his position: “It's all very well to demand women's quotas in politics but take care of the house and children first,” he reportedly told his largely female audience. “That is our sanskriti and that is what I believe.” Not a hint of political correctness there. Yet, is the minister exceptional in having such views, that women should abide by our ‘ sanskriti' first and then worry about things like political participation, or is he echoing the thoughts of the majority of men in this country?

In the context of March 8, International Women's Day, we do have to ask these questions. Are Indian women better off today, or worse off? Has there been change, or do we still have a long way to go? Have mindsets and perceptions about women's role, their status, their worth to society changed or does it largely remain the same?

Just as India's economic growth story is one of contrasts and contradictions, so too is that of women's status in India.

On February 28, even as Finance Minister Pranab Mukherjee was reading the budget in Parliament, the last day of the census exercise ended. For three weeks, 2.7 million enumerators have collected data on our 1.2 billion people. It is being called the biggest census ever attempted anywhere in the world.

For Indian women, the census data holds a special significance. In 2003, the results of the 2001 census were made public. And one of the more shocking statistics that emerged was the male-female ratio. It shook up policy makers and those fighting for women's rights. For, despite economic growth, health programmes, specific mother and child programmes, the sex ratio in the zero to six years group was heavily skewed in favour of boys. Girls were either not being born, or were dying before they reached the age of six.

The story of entrenched son-preference leading to the misuse of technology for sex-selection is now well known. But it was the 2001 census that gave us the real picture, the actual numbers. Will the 2011 census indicate an improvement, or a further decline? We will have to wait until 2013 for that.

Perplexing

In the meantime, there is always news that defies the logic of sex selection and the declining sex ratio. Haryana, the state with one of the lowest ratios of women to men, has been producing a slew of remarkable women athletes. They shone not just during the Commonwealth and Asian games last year but just last week the Haryana women's hockey team came away with a gold medal in the recently concluded National games. How is this happening? Are Haryanvis finally valuing their women more than they did in the past?

Admittedly, these visible signs of change do not represent the whole story. We should not delude ourselves into believing that a few women making it to the top in the world of sport, business, media, or any other arena where women were formerly not noticed, means that Indian women have overcome all barriers. It is also true that the signs of change are more visible in urban areas where you now see women everywhere – even at the on-going World Cup matches as never before.

Just as the census figures will finally confirm whether the efforts to make a dent on son-preference are allowing more girls to be born and to survive their first six years, the latest report by UNICEF on the State of the World's Children reminds us of the distance still to be travelled.

Focusing this time on adolescents (15-19 years), UNICEF's data is not reassuring. It covers the estimated 243 million adolescents in India and points out that 56 per cent of adolescent girls in India are anaemic, that 30 per cent of them are married, and that three out of five women in the age group 20-49 were also married as adolescents. Despite the ban on child marriage, 29 per cent of adolescent girls in urban areas, and 56 per cent in rural areas are married before they turn 18. Worse still, the data reveals that one in five women in the age group 20-49 years had given birth before they turned 18.

Read together, this means that millions of girls, who are underweight and anaemic, become wives and mothers before their bodies are ready to bear children. And these are the women who then form part of the depressing statistic of maternal deaths in this country.

Such data does not discount the real victory of the Haryana girls on the sports field. The media, in its constant effort to appear celebratory about India, tends to discount one reality while overplaying the other. But both are part of the same story, one that indicates some success and many failures.

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