Leprosy : The shadow lingers

One of the hallmarks of a developing and progressive society is the degree to which it is inclusive – inclusive of minorities, marginalized and other vulnerable sections of society who may normally not expect to find a place under the sun. Such a place of equality is what the Indian constitution guarantees in Article 14(equality) and Article 15(no discrimination)

It is this provision that one takes shelter under to fight for one’s rights; whether it be gay activists, or those who are fighting discrimination against one’s HIV status. And yet, in the gargantuan labyrinths of the Indian states, discrimination is in built in to our laws itself; effectively legitimizing them.

Usually it is assumed that the law is ahead of times when it comes to social legislation for it is understood that while society has many obscurantist and divisive influences, law makers at least in theory are above such influences and will enact laws that are progressive and inclusive. That was how laws that made Sati illegal or raised the age of marriage got into the statute books ; not because society as such was ready for them but because legislators of the time thought beyond their times and into an equitable future.

So what is one to make of the recent Supreme Court ruling that those leprosy patients cannot contest a civic election or hold municipal office in Orissa state? The case was brought to court by two men who were elected to a civic body in Orissa in 2003, but were later disqualified as they had leprosy. The Orissa Municipal Act of 1950 bars people suffering from tuberculosis or leprosy from holding such posts. “The legislature in its wisdom has thought it fit to retain such provisions in the statute in order to eliminate the danger of the disease being transmitted to other people from the person affected,” Supreme Court judges CK Thakker and DK Jain said in their ruling,

In the colonial era, the central government passed the Lepers Act of 1898, which provided legal provision for forcible confinement of leprosy sufferers in India. A hundred and more years have passed by ; politically India is an independent state, has become a signatory to the UN resolution which says discrimination against leprosy patients must be ended. Medically, leprosy is detected early and thanks to a multi drug regime, cured early too. And yet a few years short of the second decade of the 21st century, piles of archaic legislation keep those who happened to have contracted leprosy at some point on the margins of society.

The Life Insurance Corporation Act of 1956, which specifies a higher premium to the leprosy-affected, is one such law. The Special Marriage Act, Dissolution of Muslim Marriage Act 1939, The Hindu Marriage Act, 1956 or the India Divorce Act, 1869, all have provisions for divorce on the grounds of a partner suffering from incurable and virulent leprosy. Similarly, the Juvenile Justice Care and Protection Act 2000 says a child found to be affected by leprosy should be dealt with separately.

A leprosy patient cannot stand for local body or panchayat elections in states like Chhattisgarh, Rajasthan, Madhya Pradesh, Andhra Pradesh and Orissa.This prohibition extends to tuberculosis patients in Orissa’s Panchayati Raj Act. Further, if a member of local office contracts tuberculosis or leprosy during his/her tenure he/she may be declared ineligible for the job. While there are heaps of organizations fighting for the rights of those who are HIV positive, and there is pressure to constantly enact laws that are sensitive to some one who is HIV positive. There is a ringing silence when it comes to the rights of those who are being victimized for having once contracted a disease that is now completely curable.

Mahatma Gandhi, in his life time had made tending to leprosy patients and bandaging to their wounds as a personal initiative in his mission to create a society that was inclusive. Sixty years after his death, the work of fighting stigma and discrimination in alls spheres of course continues; but more pertinently in leprosy; the battle is even against an insensitive State and the laws it has kept on the books; not only sanctioning discrimination; but actually making it legal. And that feels worse !

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.