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Life after Leprosy: How Leprosy inspired the beginning of Women In Need

Updated: May 19, 2020

Over two decades, Women In Need has helped individuals start their lives anew, and overcome what stood in the way of their happiness. We’ve saved lives, distributed aid and essential supplies, provided funding for small businesses, upheld a shelter for abandoned women, and even reunited families after decades apart. Our story has many chapters, but it all began back in the early 90s at Dattapur’s leprosy colony, where Leah and Usha first met.

At this point, Usha was undergoing treatment for leprosy and studying the disease, while Leah was volunteering as an English teacher in the colony. The two years she spent there awakened her to the suffering of leprosy victims, especially women. After contracting it herself, Leah received conflicting medical advice from two leading leprosy experts - one advising her to start MDT (Multidrug therapy) immediately, and the other advising against MDT on the basis that it would trigger a lepra reaction, which had in fact happened to Usha. After getting a third opinion from another prominent leprosy expert, she decided to undergo MDT.

The following 8 months taking treatment at the colony gave me the opportunity to think about my future and I realised that leprosy had become more a part of my life than expected or intended. Not least, I had been inspired by Usha. So training at Gandhi Memorial Foundation (GMLF) was a necessary step in being able to join forces with Usha and set up our own charity.”

By the time their experience at Dattapur came to an end, Usha had overcome leprosy without any physical scarring, but emboldened by a changed state of mind, and a determination to help those who didn’t receive the level of care she did. Initially, Leah wanted to study in Japan and had no intentions to set up a charity but what she saw, the people she met, and the experiences she had, led to opportunities that felt right for her to pursue.

While training, they both came across individuals that shifted their worldview. Women who, in spite of their affliction and all the mistreatment that comes with it, had an unwavering strength, resilience and compassion. They inspired Leah and Usha to set up Women In Need, a charity ran by women for women, to give a helping hand and a leg up to those left behind by society.

Training gave them a window into the ways a leprosy diagnosis opens the door to different forms of oppression. Back then, and even today, when a woman of a low socioeconomic status is diagnosed with a condition like leprosy, overcoming the disease itself isn’t the only battle she has to fight. It’s not just her health that’s compromised, but her dignity, sense of self-worth, and respect from others. The age-old taboo follows her around like a shadow, infiltrating all of her social interactions, and rendering her vulnerable to exploitation, as Leah and Usha came to witness while training. As leprosy affects the nerves, routine body checks were expected, but some leprosy paramedics used these examinations as an opportunity to sexually exploit vulnerable women. At the time, studying leprosy wasn’t a natural career path for women, so most leprosy paramedics were men. Some of them, under the guise of a standard procedure, used their professional authority to command women to completely undress as a routine part of the examination. This was unnecessary, but many women fell victim to the deceit of these paramedics, who took advantage of their lack of awareness of standard protocol.

When some of the patients became aware of what was going on behind closed doors, many of them understandably had anxiety about coming forward for examination. This was just one of factors that motivated Leah and Usha to provide a safe space for these women to undergo treatment in; a space where they felt comfortable, where they could set their own boundaries, and not be coerced into revealing parts of themselves they didn’t want to.

But the exploitation that went on during treatment was just one dimension of a multifaceted problem. Leprosy treatment was, and still is, free to the public at government primary health centres across India, but the stigma is so strong that it prevents people – especially women – from seeking treatment. Leprosy is curable, but its perceived incurability is so deeply rooted in public perception that people try to conceal their symptoms out of fear of what could happen if others found out.

For many women, what’s at stake if their husbands or in laws discovered their diagnosis is worth more than their own health. They have to choose between sustaining contact with their children, economic security and living in the place they call home, or seeking medical help for their escalating symptoms. The former almost always outweighs the need to look after their own health. When families and communities do find out, victims often have their quality of life relegated to extreme poverty and isolation. The stigma only reinforces existing gender and social inequalities, and employment is one of the main arenas where leprosy-related stigma can completely drain your prospects. Some of the women Leah and Usha met had lost valued jobs and respect in their communities, which led to the development of serious mental health issues that remained untreated for years. This only exacerbated the neglect of their nerve-damaged hands and feet, resulting in even worse deformity, disability and life-threatening septicaemia.

Most of them couldn’t afford the cost of public transport to government hospitals, which - combined with long waiting times and having to tolerate members of the public covering their faces to make them feel unwelcome -meant that they preferred to let their condition worsen than face the prejudice that awaited them in hospitals.

So, Leah and Usha brought the medical aid to people’s homes, treating their ulcers in a safe space where they didn’t have to confront the stigma. Their support tackled a range of leprosy-related difficulties, such as delivering cooked meals to minimise the risk of injuring their hands while cooking, repairing their shacks to protect against vermin and extreme weather conditions, and providing special protective footwear to accelerate wound healing. To address the loneliness that comes as a side effect, they also organised social outings to secluded locations, where women were free to enjoy a place of natural beauty with companions who wouldn’t treat them differently because of leprosy.

Fast forward 15 years and the leprosy work goes on. The stigma may be as old as the disease itself, but that doesn’t mean society’s treatment of it should be outdated too. By increasing awareness and continuing the educate the public on leprosy, we hope to build a world where people can cure their afflictions without fear of discrimination.

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