Touching the untouchable

THE first time I visit the small clinic, I'm greeted by a row of elderly women. They're sitting outside, resplendent in their saris, and on my approach, the conversation stops. As I pause to greet them, they regard me with shy curiosity. Then, like a ripple effect, their faces light with smiles. They bow their heads and press together their gnarled hands, saying: "Namascar" with touching deference.

The clinic, at the heart of the sprawling city of Nagpur, has been running for just over a year. For Leah Pattison, from Frosterley, in Weardale, and her Indian friend, Usha Patil, it represents something of a miracle.

Since starting their work helping women victims of leprosy, a major scourge of lower class India, they have fought against a tide of prejudice and suspicion. In a country where women have few rights, and those with leprosy are shunned, few could understand why Leah and Usha were trying to save them. Yet from first meeting at a leper colony, where Leah was a volunteer and Usha a patient, they've shared the vision of offering hope to those worst affected by the disease.

Such is the stigma attached to leprosy that even doctors fear it, with many refusing to treat sufferers. When it came to finding premises, Leah and Usha were faced with a brick wall. "The main thing was to rent a property," says Leah. "When we mentioned the leprosy word, it was a big no-no. Usha and I went everywhere and people were just not prepared to rent us property. Even though people know leprosy is curable, they still call it the 'big disease'."

Eventually, a local chemist came to their aid, renting them the building beside his own, with the bonus of being a source of drugs. While smaller than they would have liked, the clinic is self-contained and clean. It's been furnished by the Rotary Club, including branches in the North-East, and has shelves full of pills and dressings. The clinic's seclusion gives patients much-valued privacy, and for Leah and Usha, it's a vital base for Start, the charity they've set up.

While I've been expecting somewhere grim, with awful sights and an air of misery, I couldn't have been more wrong. The atmosphere is relaxed, with staff and patients chatting amiably, and there are frequent bursts of laughter. Although there are deformities and horrific ulcers, there's a sense of warmth that seems to issue from the walls. I feel both humbled and awed to be in a place so full of joy.

At the centre of everything are Leah and Usha. They have a team of eight staff, including a doctor and a nurse, but carry out much of the care themselves. They refer to the patients as 'ladies', and not just 'women', which I find intensely touching, and they never use the word 'leper'.

Leah says they cherish their hands-on approach.

"Tuesdays and Fridays are our days to sit with the ladies and talk over their problems and do dressings, and that's when we really give them quality time," she says. "We have been with them from the beginning and we enjoy the contact. It will never be the case that Start or whatever we're doing will become so massive that we won't be able to give one-to-one time to the patients."

The mutual affection between Leah and Usha - at 34 and 30 - and the older women transcends cultures and generations, and is palpable in every gesture. It's clear that the clinic does much more than meet physical needs.

"It's all about helping the ladies to feel good about themselves, helping them not to feel untouchable," says Leah. "We provide the basic things like food, housing, clothing and medication but we also encourage them to take pride in their looks, which we feel will improve their self-confidence. With every individual, we go through their family history and their whole medical history. I'd like to think that what we do, we do thoroughly."

Among the patients, Dewkabai's story is typical. She caught leprosy at about 13 and was banished to a colony, where she lived in isolation for many years. On her return to Nagpur, she found her family hostile, and it is only thanks to Start that she survives, being provided with cooked meals and having her ulcers dressed daily.

Like all the women, Leah knows Dewkabai inside out. When we visit the elderly patient's home - a single room of mud and cow dung - she explains her situation. "Dewkabai is one of those people who hasn't coped with leprosy very well," says Leah. "She's always getting into fights - I understand how she feels actually. She's deteriorating physically as she's getting older. She has back problems and we've had to force her into physiotherapy."

Yet Dewkabai's spirit is part of her charm. Her toothless grin lights up a room and when she speaks of Leah and Usha, her hard edge softens. "She says we're like her sisters," Leah translates.

Others among the patients are less resilient. With her severely deformed face, Nagabai tends to hide away. I'm loath to ask to take her picture but she submits - hating every minute, yet wanting to appease Leah's guest. When asked what she and Usha have done for her, her eyes fill up with tears. "They've brought me happiness," she says.

"She cries a lot because we ask her how she feels," Leah explains. "Nobody asks these ladies how they feel."

Nagabai's deformities, like those of the other patients, have been caused by pure neglect. The tragedy of these women is that leprosy is completely curable by simple antibiotics. That poverty and ignorance have, for so many, led to disfigurement is a source of frustration for Leah.

"You catch leprosy like a common cold but it's very difficult to catch," she says. "It's a very gradual disease - you have to have it for four or five years to get severely deformed.

"Most of our ladies have nerve damage, which is a permanent thing. It causes a loss of sensation in the hands and feet. The bone becomes infected and it works its way out, and you end up losing fingers and toes. We have a constant battle in trying to educate our ladies that they shouldn't neglect themselves."

Key among Start's concerns is trying to reunite patients with their families and, where possible, getting them to play a part in their care. It's never easy, but Leah and Usha persevere, resorting to bullying when they have to. They also try to forge relationships within the group, holding up the battlers as examples. "Some of the ladies have so many problems and they're just so positive, and some of them have relatively minor problems and they're just so negative," says Leah.

For one of the youngest patients, elfin-faced Wimal, there are hopes of marriage. "She's a lovely person - she's got a very youthful personality and she's quite cheeky," says Leah. "I think someone with the same condition might take a shine to her and see beyond her deformities."

Perhaps from years of silence, or because they have blanked them out, the women are reluctant to discuss their pasts. Yet Leah and Usha, who first met them at their most desperate, truly know how far they've come. For Usha, the women's journey has been especially poignant, as having suffered years of leprosy, it's one she's made herself. Now well and thriving, she's proof of what can be achieved.

"Usha has had to contend with her own insecurities," says Leah. "When I first met her, she didn't want to go outside. Now she goes to England and speaks to the Rotary Club. For Usha, this has been a remarkable journey."