“Promoting self-help, not sympathy”: Kashmir’s She Hope Disability Centre Provides Support for a New Life
“Keep Guns Outside, Please.” The brightly-colored sign on the gates of She Hope Disability Centre is a reminder of Kashmir’s ongoing conflict.
Sami Wani, the young manager, smiles when asked about the instruction. "We have a military camp nearby. They would often drop by for friendly visits, obviously with arms and ammunition. The patients, especially children and women, would get scared"
Did he get the desired result? “They stopped coming,” he laughs.
Sami Wani has been running the She Hope Disability Centre since 2001, offering physiotherapy and corrective surgery, as well as hearing aids and low-cost prosthetic legs (the latter pioneered by Mobility Equipment Needs of the Displaced, MEND, a New Zealand-based charity). Housed in a single story, four-room brick building, the center has treated more than 700 people in the last two years alone.
In 2008, She Hope was among 12 finalists in the BBC World Challenge, shortlisted from 1,200 nominees. A global competition organized by BBC World News and Newsweek, World Challenge selects the best projects and small businesses demonstrating innovation and enterprise at the grassroots level, and awards them with financial aid.
Wani says he gave a tough fight, but ultimately lost out on the number of votes needed to win the challenge. "The voting was done by email (in itself a challenge) and I had no money for publicity - how could I have made it?” Wani was counting on the $20,000 prize money to set up a hostel for patients in remote areas and to pay his staff salaries, which have now gone unpaid for the last three months.
"The cost (of treatment) is prohibitive," he explains. "We give out all these aids free of cost and also take post-operative care of our patients. Their rehabilitation is also our responsibility." But like his patients, Wani is resilient.
In the post-operative care ward of the center, shy 14-year-old Rihana is laying on a bed with her leg wrapped in a scarf. Removing it, she reveals a cylindrical steel wire frame, or external fixator, encircling her lower leg. Sitting close by, her mother Sakeena says Rihana’s left leg was shorter than her right, which made her limp. She says nobody told her that this could be treated. "We thought it was God's wish until I heard about this centre and came to check for myself."
Rihana giggles happily at the idea of returning to school - now sans embarrassment and the prospect of being taunted by other children. Her mother is happy that her daughter can lead a normal life, which also means a good match in marriage.
The number of disabled persons in Kashmir has sharply increased from the last two decades of ongoing conflict, further overstretching the already-inadequate health facilities offered in the region. Hospitals in Kashmir, generally overburdened, cater to basic heath services. Wani’s initiative goes far beyond by reaching out to the disabled and providing them all they require, both medically and with support services.
According to an article published by Combat Law in 2008, "there are 302,670 persons with disabilities, constituting about three percent of the total population of the state, as per the Census of 2001. Unofficial estimates overtake that figure, as it only takes into account persons that are registered as differently-abled." So no formal survey has been carried out to accurately determine the exact number and types of disabled persons in Kashmir. Based on its own calculations and numbers served, She Hope estimates that 20,000 people urgently await basic assessment.
Wani says the recent burst of protests saw a further increase in the center’s patients. "We actually did a few amputations and treated a lot of cases during the protests that the valley witnessed during the later half of 2008."
Since childhood, Wani nurtured a deep desire to do something for the disabled, which eventually led him to sideline his career, dedicating himself fully to the center. After training to be a physiotherapist at a college in Manglore, India, Wani returned home to Kashmir in 2001. A chance email led him to contact Rob Buchanan, Director of MEND.
When Wani inquired about a job, Rob gave him an exercise. He asked him to tour the local area and calculate the number of disabled. Wani went door to door and was astonished to count 1,500. He suddenly understood what Rob was getting at.
Wani says this encounter with Rob helped him identify what he was yearning for: a chance to make a difference.
With the help of MEND he opened a single-room community-based rehabilitation program in his hometown of Vyail, around 20 km from Srinagar, the capital of Jammu and Kashmir. Every week he visits a new village with his staff and begins creating awareness of the causes, prevention and treatment of disabilities. This is followed by identification, assessment and referral of disabled people to his center.
The experience has been an eye opener. "I was really pained to see the lack of awareness, especially among people in remote areas. Poverty and the high cost of treatment made things even more difficult for them," says Wani.
The social stigma attached to disability, particularly among women and especially in rural areas, adds to the complexity of the problem.
Wani recalls an incident where villagers told him about a family with a deaf girl. "She was so beautiful. We approached her parents to help her, but they refused to admit [she had a hearing] problem. After a few days, her mother came to our center for help." Wani says she was very concerned that someone would learn about her daughter's disability.
Realizing the need to upgrade his center's infrastructure and facilities, Wani started pooling resources. With the help of his father who provided land, he constructed a four-room building. He also hired two physiotherapists, an occupational therapist, a speech therapist and a driver. Donations came from the police and Indian army, as well as locals.
Throughout the year, She Hope conducts awareness campaigns and identifies people with disabilities. Surgery cases are identified and treated during the winter by the local government hospital. The center then provides the required aids, oversees postoperative care and looks after the patients’ rehabilitation.
Wani’s mentor, Rob visits every year for a few months with his team of doctors and helps Wani with the surgeries and aids.
In the summer, the center is converted into a special school for the disabled where every child is given individual attention and taught per his or her specific requirements. Deaf students are given speech therapy and the blind are taught Braille, after which many children are able to join the normal schooling process. She Hope also admits mentally –challenged students.
Living up to their motto of "Promoting self-help, not sympathy" the center also has a vocational program that provides training in practical arts and crafts like basket weaving, cutting and tailoring, with the aim of helping their clients become self-reliant.
"In some cases it is really difficult for the patients to go back to school, especially when they have crossed a certain age, so we try to help them by teaching some skills," says Wani, cradling a fruit basket made by a trainee at his center. She Hope also offers them soft loans for setting up their own small businesses. Wani's face is radiant when he talks about a girl who opened a tailoring training center of her own in her village.
Wani’s next goal is to set up a hostel facility for patients. "There are far off areas where there are no roads and no reliable means of transport, so it is really difficult for patients to come for daily physiotherapy."
In 2007, supported by the Finnish Abilis Foundation, She Hope set up services in Kupwara District, which was hit by a massive earthquake in October 2005. "The earthquake caused much devastation and the number of people left disabled was really alarming. With limited resources we were able to treat only a small number, but we got almost 300 cases," says Wani.
The center has submitted a few proposals for funds to the state department of Social Welfare, which has in turn forwarded them to the Central Government of India. Though the government has cleared She Hope for foreign grants, thus offering the promise of much-needed growth, Wani says the files are gathering dust there. “It is a long, long wait and I am still waiting.”
The center may not have won the $20,000 prize and is surviving from one grant to the next, but that does not deter Wani. He continues to dream of opening a center in every district of the state, with the hope that no disabled person will suffer from want of treatment.