Life is a challenge for the physically disadvantaged people. While many overcome hurdles to living a better life, an insensitive government in Kashmir limits their capabilities. Aliya Bashir reports.
As the world was observing world disabled day to highlight the plight of differently able persons, the disabled in Kashmir were being beaten with bamboo sticks. Ignored by their government, around 500 persons tried to march towards United Nations Military Observers Group at Sonwar.
Police intercepted them at various points, resorted to cane charge and detained around 50 of them. The disabled had taken out the march to highlight their problems and demand fair treatment from the government.
“We had planned to submit the memorandum of 20 demands to Ban Ki Moon through UN office. We started our march from Jawahar Nagar, but were stopped. We, however, mailed our memorandum to Moon,” says Sajad Masoodi, President All Jammu and Kashmir Handicapped Association.
He says that the government has not even conducted a survey to ascertain the number of disabled in the state. The association has 25000 registered members across Jammu and Kashmir and as per its independent survey was done in 2008, the state has more than 3,62,472 disabled persons.
While the government conducted some functions to commemorate the day, a large number of handicapped persons who cannot move out on their own, stayed in their homes.
Tabasum, 23, is fiddling with her cell phone with a blanket on her legs and a heating blower beneath her feet, while her sister Saima, 18, sitting next to her, is reading an Urdu book at their home in Dangerpora, Nawakadal in the old city. Saima is appearing for the higher secondary examination. The sisters have many things in common. In early teens, they lost the ability to walk, sit upright or move their arms. They are suffering from muscular dystrophy, a genetic disorder that gradually weakens the muscles.
While struggling to get educated Tabasum passed her matriculation in 2006. But, due to intense physical weakness and not-so-good financial position at home, she quit studies. Yet, she developed her interest in computers and completed a three-month course from Government Polytechnic College, Bemina.
“I was very upset with the way my parents were struggling to look after me and Saima. The expenses on medicine and our education were huge. I have a normal sister and brother and their education is more important, so I decided to quit,” says Tabasum.
Like Tabasum, Saima too had to learn to dream small. After she passed matriculation with 66 per cent marks in 2008, she wanted to choose science subjects.
“They told me that I can’t opt for the science subjects as I would need to attend practical and regular classes,” says Saima. She opted for humanities, against her wishes.
Last year, Saima for the first time in her life went on a picnic. Her school went on an excursion to Badamwari, three kilometres from her home.
“It was a different world. I was like mad, literally crying to see nature from so close,” Saima says. “When I shared the experience at home, Tabasum also wished to see the place but then things never became feasible.”
Their mother Haleema spends all her day looking after her two daughters. After every eight days, their mother bathes them, changes their clothes, and combs their hair. Since the sisters cannot move on their own, she carries them in her arms.
“I follow them like their shadows. I have to carry them on my shoulders as they cannot move without any support,” she says.
Although, both the children were born normal, it was after the age of four when they were unable to stand by their own and would fall in the absence of any support. After examining Tabassum, a doctor told them that their other child may also have the same problem. Then Saima, their third child showed signs of the disability while other two children Wasim now 21, and Iqra, 16, are normal.
Their father, Muhammad Ramzan Gugjoo, who has a grocery shop outside his house also had to sacrifice in his own way like other family members. In order to spend more time with his daughters, he quit selling carpets to spend more time at his home. “When the doctor explained that the disability of our daughters is for lifetime, I decided that I’ll try my best to keep them away from insecurity and loneliness,” Ramzan says.
From dawn to dusk, both the parents are busy looking after their daughters, yet there looms a worrisome sense of uncertainty about their daughters’ future. “I tried my best to provide them education to make them independent. But Tabasum left her studies and Saima too couldn’t choose subjects she was interested in. That is what is bothering me,” says Ramzan with a sigh.
The impoverished family says they are not aware of any government schemes for the disabled except the monthly Rs 400 pension. “We had to fight for so many years to get a disability certificate,” Ramzan said.
Tariq of Shangus Islamabad was born with low vision. His weak eyesight was not detected early leading to 60 per cent eyesight loss.
Doctors advised Tariq to wear spectacles so that he was protected from any further loss of eyesight. But young Tariq would not care. When Tariq completed matriculation in 1995, with 40 per cent marks, his eyesight loss had accumulated to 80 per cent. Interestingly, his normal twin brother failed in the exams. Tariq got all the applause from his family. He passed his class 11th exam in science subjects but left his studies midway due to worsening eyesight.
For six years he could not read or write and would spend all his time at home listening to the radio. He says disgusted with his life, he contemplated suicide. “I ran off many times from my home and even spent one night in a mosque. But then I understood that it was impossible to live without my family,” Tariq says.
One day Tariq met his former classmate, who used to be an average student, and was now a post graduate in English. This made him rethink about himself.
He resumed studies, and after passing higher secondary examinations as a private candidate, joined the Degree College at Islamabad and completed his B.A degree in 2006.
“There was no infrastructure for disabled children at all in schools and colleges. I managed my studies by using a tape recorder to rewind lectures,” he says.
The same year, Tariq was selected as a contractual teacher but he preferred to continue studies and completed the post-graduation in History from the University of Kashmir in 2008. With 63 per cent Tariq was the third topper in the class, though he used a scribe to write the exams.
The same year, Tariq topped M.Phil entrance in open merit and also qualified B.Ed entrance exam. In July 2009, he was selected as a teacher and posted in High school Anchidoora under RBA category.
Later that year Public Service Commission selected him as a higher secondary lecturer in the open category. He was initially posted to Higher Secondary School, Shangus. However, after learning about his disability, the department did not allow him to teach in the secondary school.
“It was the most emotional setback of my life. I even asked the officials that they can have my demo and even ask the earlier teachers and students where I had studied. But to no avail and was posted as a lecturer in DIET (District Institute for Education and Learning), Islamabad,” he says.
Whatever the bumps Tariq was able to achieve all that because of the support from his well-off family. There are 1.84 lakh children among the 301634 physically challenged people in J&K according to 2001census. There is no school in J&K where special teachers for blind are engaged. Govt of J&K has so far failed to introduce Braille technique of education for the blind. The agencies like Helpline Special School Bijbehara have started the Braille education for the blind.
Disability is not always congenital. Abdul Hameed Dar, was happy living with a family. On 20 July 1993, he left his home to visit his migrant friend’s house in the neighbourhood.
He still remembers his younger daughter tugging at him and pleading to come along. “She put her brooch on my shirt. And I gave her five rupees,” Dar recalls with tears in his eyes.
Dar was walking on the third floor of the house when the floor damaged by seeping rainwater broke off. He fell through and received a spinal cord injury disabling him for life.
Coincidentally, two days prior to the accident, Dar had read a detailed article on spinal cord injuries in a newspaper.
“When I fell, I followed the instructions as suggested in that article. Doctors later attributed 50 per cent of my recovery to follow those instructions,” he says.
After being hospitalised for many months, Dar resumed his work and tried to behave in a normal way. He was an inquiry officer at JK Tourism Development Corporation. “I was never bogged down by my disabilities and I tried to hone my skill in an optimistic and pragmatic manner,” says Dar.
From the last 17 years, Dar has seen up-close the fate of the disabled people in Kashmir.
“The state government and its social welfare department are disorganised as far as their programs and policies towards the disabled persons are concerned. They (government) have made a mess of it,” says Dar.
In 1993, the parliament passed an act for the welfare of the people with disability and the state government also endorsed the J&K Persons with Disability Act 1998. The act makes it the constitutional obligation of the state government to provide rehabilitation, relief, social empowerment, medical healthcare, barrier-free infrastructure, equal opportunity and full participation and legal protection.
Dar says that physically challenged persons often live in penury and are “usually tormented for small things”. “They are the weakest, most socially backwards and downtrodden people in the state,” he says.
As the government, which mostly boasts about empowering disables, does nothing to provide them access to public places, government offices, parks, shrines, lakes or health resorts, they remain confined to their homes. Medical researchers say such persons need more recreation and exposure to the natural world without any hurdle.
“Nobody understands our pain. We too want to move out with family and friends. But, there is a lack of disabled-friendly facilities outside our homes. Why this indifference? Don’t we have the right to visit places of our faith and belief,” asks Dar.
As a disabled person is always in need of the support system, the “whole family becomes disabled”. “I don’t move out and my wife does not leave me alone in the home. As our children feel that the parents cannot move out, they also stay home in solidarity with us,” Dar says.
Composite Regional Centre (CRC) Bemina Srinagar is the only institute meant for the rehabilitation and human resource development of persons with disabilities. The Rehabilitation Council of India (RCI) has recognized the Institute for the courses like special B. Ed, Diploma and bachelors in rehabilitation therapy, prosthetics and orthotics and other courses.
“CRC has got part-time directorate and most of the faculty members are missing. The administrative officer’s job has been given to an accountant as an additional charge. The courses are taught by guest faculty,” says Javed Ahmad Tak Chairman of NGO
Humanity Welfare Organization Helpline. “Thus the students develop flawed concepts about the disability sector in which they want to work.”
Tariq, also a member of humanity welfare organisation helpline has been actively advocating the cause of the disabled.
Though Tariq has qualified the much sought Kashmir Administrative Services exam, the PSC authorities, he says, told him that he cannot be selected as there was no post for blind candidates nor any reservation for the disabled persons.
“We don’t want sympathy or alms. We want cooperation, if I am disabled but my sentiments are not disabled,” he says. “If it is right to education, why can’t blinds have? If we are a burden let all persons with a disability be killed. And if there is any policy or scheme then there should be the active implementation of that.”
Tariq says many students with orthopaedic disability qualified KAS prelim but are confused whether PSC will give them reservation as in other states.
“There was no reservation for us while in other states reservation is given in all courses,” says Tariq.
“In J&K Assembly, the question regarding disability had one answer from ministers which is that they have sanctioned integrated social security scheme (ISSS) pension for 50000 disabled people and 50000 more will be covered soon. But what about our education and employment which is our basic right,” Tariq laments.
Javed Ahmad Tak’s life took a twist on 21 March 1996, when unidentified gunmen barged into his uncle’s house at Bijbehara in south Kashmir with the intention of kidnapping his cousin, a National Conference activist. He was then 21. Bullets pierced through his spinal cord, liver, kidney, pancreas, spleen and intestines. His right kidney, spleen, part of liver and intestines were removed. The surgery on his spine did not help to leave him wheelchair bound.
Javed underwent severe depression and stress. He lost his friends and solitude and confinement started taking a toll on him. Somehow he tried to retract his life.
He started free tuitions for poor children and kept himself busy with the children of his locality for hours which overcame his trauma to some extent. “God helps those who help themselves,” he believes.
The enthusiasm teaching generated, encouraged him to pursue studies by doing two distance certificate courses in Human Rights and Computing from Indira Gandhi Open University. Getting more confidence he started working for the rights of physically and mentally challenged.
“For poor people facing disability, life is very hard and miserable in my area. Disabled persons mostly depend on social security. There are no provisions for them to get employment and live with dignity. So, I started my life in my own way,” he says.
With all the optimism he could muster he went on but life was never easy.
Seeing the social stigma, lack of access to education, employment, health facilities and accessibility, the disabled face, Javed started writing complaints to Human Rights Commissions both at a state and central levels.
After completing his master’s degree in Social Work at Kashmir University, he worked for the welfare of the disabled persons and started fighting for their rights. Besides seeking support from community leaders, Javed filed public interest litigations in J&K High Court. The PIL resulted in the government services recruitment board implementing reservation for the physically challenged.
Javed’s struggle at the Kashmir University forced the university authorities to place ramps at the entrance of seven buildings including hostels, administrative block, examination block.
Javed has been awarded the National Award for Welfare of Persons with Disabilities, as well as the J&K State Award for Social Reforms and Empowerment.
Javed’s NGO has started a special school for visually impaired children and children facing different disabilities, providing Braille education and vocational education to them.
“We work for the advocacy of vulnerable and marginalized sections of the society. So far we have succeeded in filing a PIL in the J&K High Court which resulted in the formulation of policy for physically challenged and provision of three per cent reservations in employment and education. The scholarships for academic and professional courses have been included in the policy,” says Javed.
Worldwide equal opportunities, protection of the rights and full participation of disabled persons are considered as rights, however, here the popular perception is yet to graduate from perceived notions of charity.
Though the Indian disabilities Act -1995, JK persons with Disabilities Act – 1998 and UN convention of the Rights for persons with disabilities ratified by the country in 2008, the disabled in J&K receive police batons when they ask for the constitutionally guaranteed rights.
“We wish we get our due to prove ourselves as real contributors in the development of our state. But there are hurdles in our empowerment hampering the integration of disabled in the mainstream society,” Javed explains.
Until the time governments learn to respect the constitution and fulfil its obligations, the disabled can only count on their families.
Four-year-old Ayman Nazir wants to play with her cousins, and walk like them. Throughout the day, she makes many attempts to walk, whether to get a toy or mimicking other kids in her family. But she can’t.
Ayman is the only child of her parents, who are trying their best to get her treated. The family came to know of her disability when she was not able to stand on her feet. “My every happiness is linked to Ayman. Till I am alive I will take care of her dreams and wishes so that she wouldn’t have a feeling of disability,” says her mother, a resident of Wanbal, Rawalpora.
The family says that there is no government or community support for the disabled. “The disabled persons are always a neglected lot. The pain can only be understood by those who have a member suffering from such a problem, otherwise, no one can feel what you have to go through bringing up such children,” says Ayman’s mother.
WRONGED
The government of Jammu and Kashmir seems insensitive to the problems faced by physically or mentally challenged persons.
1. In 2006 a draft policy formulated by then secretary to government social welfare department to replace existing laws regarding empowerment and rights of disabled to bring them in line with the UN Convention for the rights of persons with disabilities, ratified by the country. But it is still awaiting implementation.
2. As the decadal census of 2011 has already begun, the enumerators are not sensitized about identifying and properly registering persons with disabilities. There is a need to train the enumerators properly so that the real picture regarding the number of persons with disabilities is known and the government is able to draft a concrete policy regarding their rehabilitation.
3. All universities in the state should provide concession in fee and reservation in admissions and jobs to students with disabilities.
Barrier-free building codes and bylaws should be made so that persons with disabilities have full access. The handicapped should be given more time to write exams as they are at a disadvantage as compared to normal students.
4. Unlike other states, there is no reservation for admission of persons with disabilities in professional courses like MBBS, BDS, Engineering, B. Sc Agriculture, B. V. Sc, B. Ed and other such courses in J&K.
SRO 294 provides three per cent horizontal reservation, but the Board for professional exams denies them reservations in all exams, which also goes against the JK Disabilities and Indian Disability Acts 1998 and 1995 respectively.
5. In J&K the monthly assistance amount is RS 400/= which is released in a haphazard manner that too after months. But, in other states, the disability pension is 800 – 1000 rupees for severely disabled people who need extra expenses as medical aid and other expenses.
6. There should be one berth reservation in Legislative Council to discuss our issues and protect the rights with physically fit members to sensitize the other members regarding disabled persons.
7. There should be an appointment of a full-time disability commissioner, as in other states.
9. The disabled face accessibility problems almost in all buildings like hospitals, schools, universities, courts, railway stations, civil secretariat and other government departments. In the absence of ramps or lifts, the disabled persons face hardships. Besides, all the under construction buildings are having disabled unfriendly architectural designs.
10. Employment through SSRB, PSC and district authorities should take disability in consideration. There should be no discrimination in class 4th appointments made at the district level.
11. No curriculum for the blind children has been framed so far by the education department in J&K hence there is no school for blind here. In other states, blind children are given Braille script based education.
12. The railway in J&K is futile for them as the stations are not disabled friendly. Construction of ramps instead of stairs could make a difference.
13 The DDRC’s in different districts are defunct and the clients are not in a position to seek benefits of rehabilitation and aids and appliances there. The CRC lacks a full-time director and professional Administrative officer and proper faculty.
