“The walls around my home are only 20 centimeters thick, but they keep out an entire world.” These are the words of a leprosy-affected individual, languishing in one of the 700+ so-called ‘leprosy colonies’ of India, which are inhabited largely by the cured but still stigmatized people.
For centuries, leprosy was a feared disease. A malady with no remedy. An ailment that disfigured hands, feet and face, and scarred the mind. The affected were ousted from their homes, banished from their communities and estranged from society.
In the 1980s, largely due to the generous contributions and concerted efforts of Yohei Sasakawa of Japan, and focused research by WHO, the once feared disease became curable. Thanks to WHO, Sasakawa Memorial Health Foundation, Novartis Foundation, national health ministries and numerous local NGOs, each subsequent year reported a dramatic drop in the number of new cases.
Since then, almost a crore of Indians have been successfully treated of the disease. However, the lamentable fact is that most of them are still marginalized while leading their lives in despair, humiliation and ignominy. Today, the actual number of leprosy afflicted individuals in India is less than a lakh, which is, roughly one percent of the nation’s population.
The lamentable fact is that most of them are still marginalized while leading their lives in despair, humiliation and ignominy.
Even though leprosy is fast assuming the status of a ‘rare disease’, the issue of discrimination against the cured and afflicted alike is still quite rampant. To knock down this barrier, the first step should be to dispel all the clouds of confusion and myths surrounding the disease. Dissemination of authentic information is a must. Using the right medium, the message that leprosy is curable, and that it is non-contagious once the patient starts undergoing treatment needs to be conveyed. Simultaneously, appropriate steps need to be taken to tackle the prejudice harboured against those with leprosy
The primary stigma attached to the afflicted is that they are a burden on society. According to the WHO Goodwill Ambassador for the Elimination of Leprosy, Yohei Sasakawa, the worthy son of the elder Sasakawa, “The onus lies on the patients to prove to all and sundry that they are no lesser mortals and can contribute to society while being economically self-reliant.” Around the world, people affected by leprosy are slowly but surely finding a voice of their own. In the words of Dr. P.K. Gopal, President of the National Forum of the People Affected by Leprosy, “What we want is not charity, but the opportunity to show that we are capable.”
This is where the challenge lies.
Take the case of a young man hailing from a town in north India, who wanted to become an auto rickshaw driver. His license application was rejected when he gave his address as that of a ‘Kusht ashram’.Aguest house under the aegis of a renowned international NGO cancelled prior bookings of a group coming down from Delhi for a conference on the ground that many of them had leprosy, even though each one had been successfully treated. The Hindu Marriage Act cites leprosy of one of the spouses to be a valid ground for divorce. As many as 21 laws (Central and State combined) exist which are unabashedly discriminatory towards those affected by leprosy, even after being cured. It seems an individual, once touched by this bane is forever tainted as a ‘leper’ or ‘kodhi’ or ‘maharogi’. Hence, today, leprosy exists not that much on thehumanbody, as in the mind.
On the other end of the spectrum lies a plant affiliated with the TATA group at Kondhwa, Pune, whose employees include individuals cured of the disease. Regrettably, instances such as these are more of an exception than a rule.
Seven years ago, the Nippon Foundation Chairman Yohei Sasakawa had approached the Office of the UN High Commissioner for Human Rights on behalf of those who are denied their human rights because of leprosy. Since then, a number of NGOs, affected communities and ultimately the Japanese Government have joined the movement. In June 2008, after a prolonged lobbying of the UN Human Rights Council (HRC), a resolution condemning discrimination against people affected by leprosy was welcomed with unanimous approval. The HRC Advisory Committee took upon itself the agenda of drafting a set of principles and guidelines for eliminating stigma and discrimination against the leprosy-affected. The final draft of which will be submitted to the HRC for endorsement in September 2010. Another step in the right directionwas taken on January 25, 2010 in Mumbai, at the historic Crystal Grand hall of theTaj Palace hotel,whenthe business sector joined the fray by supporting the principle of equal opportunity in the workplace for people affected by leprosy.
As many as 15 world business leaders from 10 countries have signed the “5 Global Appeal to End Stigma and Discrimination Against People Affected by Leprosy”. The numerous endorsers included Fujio Cho (Chairman, Toyota), Sir Richard Branson (Chairman, Virgin),William C Weldon (Chairman and CEO, Johnson and Johnson), Ratan Tata (Chairman, TATA Group), Keshub Mahindra (Chairman, Mahindra Group) and Mukesh Ambani (Chairman, RIL).
Sir Richard Branson, at the launch ceremony remarked, “As business leaders we have a responsibility to reject discrimination in all its forms and encourage equal opportunities for all. I hope the Global Appeal will send out a strong message that prejudice and stigma cannot be tolerated in the workplace.”
Using the analogy of a cycle, one can conclude that while the front wheel of medical cure is strong, large and well evolved in case of leprosy, the back wheel of socio-economic integration is still very weak and feebly developed.
