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Mainstreaming along the Indus

A group of committed individuals is actively involved in rehabilitating those with disabilities in the high mountains of Ladakh. SUJATHA PADMANABHAN writes on how an uphill task has been realised because of dedication and sensitivity to others' needs.

Health workers being trained in screening for disability.

IMAGINE you are cerebral palsied, with a multiple disabling condition that necessitates the use of a wheelchair for your mobility. Now locate yourself in a small and remote village amid bare and rugged mountains at a height above 11,000 feet in the district of Leh in the cold desert region of Ladakh. The problems may not be immediately evident, but for a moment, ponder on the mobility issue. Even if you had developed the required muscle power to manoeuvre your wheelchair over the undulating terrain, you would in all probability have discovered very soon that your wheelchair was not designed to do so.

Yet, persons with disabilities, one of the most marginalised groups of all societies, who live in the high mountains of the Leh, Khaltse, and Nyoma blocks of Leh district are today not without hope. A quiet revolution is taking place in their lives in villages as high as Mudh and Nidder at about 14,000 feet in the Changthang area, and as distinct as Hanu Goma with a strictly endogamous population of pure Aryan race.

The catalyst for this big change has been a small but highly committed group of individuals of the Namgyal Institute for People with Disabilities (NIPWD). Established in June 2000, the group initiated work in the three blocks of Leh district with a very clear philosophy of mainstreaming disabled individuals into systems that exist for the normal population, without segregating them by establishing a specialised institution to cater to their needs.

As a result, a perceptible change in the attitudes of a large number of government officials, members of the Ladakh Autonomous Hill Development Council, and citizens has taken place. The Health Department, for example, has initiated training programmes for its health workers in conducting surveys to determine statistics relevant to disability. Besides, with the help of NIPWD, a local person has been chosen to undergo a one year training course in physiotherapy to be able to oversee the physical therapeutic needs after he returns. The Health Department has been open enough to consider absorbing him once he finishes the training.

Refreshingly, the Education Department has been as supportive. While the staff of the Namgyal Institute busied themselves over the last six months, identifying disabled children who were not going to school and then facilitating their admission into Government schools, the Education Department deputed a teacher to do a one year post graduate diploma course in special education. This teacher, having just completed her training, will function as an itinerant special educator, helping the government schools meet special needs in the classrooms.

In the village of Stok, about — 20 kms away from Leh, 13-year-old Rigzin Tamchos has Spina Bifida, a congenital defect of the spinal column. He had never been to school as he could not walk. A visit by the staff of NIPWD, and a discussion on the need to ensure barrier-free environment to allow for mainstreaming, enthused the school principal to get his students to construct a wooden bridge across a stream that they all crossed by jumping over boulders, but Tamchos could not. Today, Tamchos is in Grade II and his principal proudly tells visitors that physical inaccessibility was the only barrier to his education.

Twenty-five year old Tsering Chonzom spent all of her waking moments in the glass room of her traditional Ladakhi house in her village in the remote Changthang area. She had a panoramic view of the village below, and in the distance the snow capped mountains. But this was little solace to Chonzom, a cerebral palsied quadriplegic young woman, who had little to do outside her room. Nor was it any solace to her family members who did not have the wherewithal to involve her in any of the activities of village life. But things changed dramatically for her when a paper bag unit was launched in her village. This seemed like a viable vocational option for NIPWD to catalyse for a number of the 18 plus disabled adults like Chonzom, as Ladakh has had a very successful ban on plastic carry bags over the past few years. Four units function now, and in each group persons with differing abilities support each other in the many tasks involved in the entire production process. Today, 22-year-old Nargis who has mental retardation, plans to buy herself a pair of much needed shoes before the coming winter from money that she has earned, while Iqbal, severely physically disabled, says stoically, `` It does not matter to me if my monthly earning is small. I am now employed and busy all day.'' With a mischievous glint in his eyes, he adds, ``Don't visit me on Sundays, as that's my day off!''

While NIPWD linked up with existing governmental systems, it has also actively networked with other NGOs and institutions to make them include disability in their mandate. Recently, it linked with Ladakh Adventure Sports Institute (LASI) to see how persons with disabilities could be roped into their activities. What ensued is inspiring. Nargis, who had not been part of even a trekking group before, joined the first ever women's expedition to Kanglacha at 21,000 feet. She made it to the advance base camp at 18,000 feet, which is no small achievement for a first timer. LASI also helped in conducting archery training for a number of disabled young adults from many villages. Archery is a summer pastime in Ladakh, when a number of archery competitions are organised. The trainers from LASI discovered that those with hearing impairment showed a distinct potential for the sport, probably due to the fact that sounds around them caused no distraction.

In 1996, ``The Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995'' came into force. This law was to ensure equal opportunities for people with disabilities and allow for their full participation in society. Efforts that are ongoing in Ladakh ensure the implementation of the Act in full spirit. Hopefully these will multiply to reach out to the entire disabled population of Ladakh, which is roughly estimated to be two per cent of the total population of 1.5 lakhs.

Such initiatives are valuable pointers to the way in which environments, hitherto created and controlled wholly by the able bodied, could be modified to enable persons with disabilities to participate.

On my recent trip to Ladakh, as the staff of NIPWD excitedly discussed its awareness raising plans for World Disability Day which is celebrated on December 3, I glanced at the immense landscape all around me.

Iqbal applies gum to the paper bag he is making.

We were on our way back from a long trip to the villages in Khaltse block. What I saw reflected the philosophy and the efforts of NIPWD — little boulder strewn streams and canals criss-crossed the mountain sides and the village fields to finally merge with the gushing waters of the Indus river. Yes, it is an uphill (or downhill for the waters) task for disabled persons, I thought, but with commitment and sensitivity towards disadvantaged groups from every section of society, maybe one day it would be difficult for us to tell the streams from the river.

The writer trained as a special educator and has worked with the Spastics Society of Northern India. Currently, she is with Kalpavriksh, an environmental action group.

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