The many conflicts of children with disabilities in Jammu and Kashmir

It's ‘chillai kalan’ — the 40 harsh winter days in Kashmir now. Everything is foggy and frozen in the Valley. The period will end on January 29. It will be followed by ‘chillai-khurd’ and ‘chillai-bachha’ — the long winter spell — likely to end in March.

For Srinagar resident, Tahreen Qadri, life is one long ‘chillai-kalan’ that is refusing to end. The 45-year-old mother of two children with disabilities is fighting multiple battles. She is single-handedly taking care of her twins after her husband died due to a heart attack in 2022.

These days, Qadri has no source of income. Earlier, she was running a small tailoring shop from her home. Her fading eyesight does not allow her to sew clothes anymore. A few days after Qadri gave birth to her twins, one of them, Mohammad Qurram, was detected with hydrocephalus — a neurological disorder caused by an abnormal buildup of fluid within the brain.

Her other son, Mohammad Daniyal, suffered from a malignant eye tumour when he was six months old. Despite multiple surgeries, Qurram’s condition worsened. He has developed developmental and physical disabilities. Qurram uses a wheelchair and has only 40 per cent vision. Daniyal lost vision in his left eye because of the tumour which was successfully operated upon years ago.

“Both my boys (9) are my life. Since their birth in 2015, we (she and her deceased husband) have tried our best to give them the best available medical care. We took our children to Delhi, Hyderabad and Jammu for their treatment in hospitals. We have lost all our savings. We have sold our house, cars and jewellery. Today, I have nothing,” Qadri cried, narrating her plight.

Soon she regained her composure. Qadri added she was a fighter and would not give up until her sons became independent.

Who will give justice to the Kashmiri mother?

While Daniyal is studying in a private school, Qadri is fighting hard for Qurram’s education. “Qurram cleared an assessment test in a private school. But I can’t afford the school fees. I have been repeatedly requesting the authorities to help my elder son and provide for his treatment and rehabilitation. Nobody is listening to my pleas. I desperately need a job. Otherwise, it will be difficult for the three of us to survive,” said Qadri.

Like Qadri, hundreds of parents of children with disabilities in the union territory of Jammu and Kashmir are facing insurmountable roadblocks in providing education and healthcare facilities to their children. The erstwhile state — now a union territory — is always in the news for its military strife. The violence has ruined scores of families. The families of disabled children are enduring added conflict. They are battling for inclusivity and accessibility too.

According to the 2011 census, there are more than 1.01 lakh children (56,336 boys and 45,062 girls) with different disabilities in Jammu and Kashmir.

No law to protect the rights of disabled children?

The biggest obstacle for special children is that schools —especially private ones — are reluctant to admit them citing lack of special educators and disabled-friendly infrastructure and equipment.

Parents say government schools where disabled children are admitted are ill-equipped to cater to their special needs. Thus often children are forced to stay at their homes without any means of education, therapy and rehabilitation measures. These children are losing their valuable years in the hope of getting admission to a school. Thus putting their future at stake.

Denying education to children is a gross violation of the Right to Education (RTE) Act 2009. Under the RTE Act 2009, children with disabilities must be provided with inclusive education in a barrier-free environment.

For more than a decade now, Srinagar-based child rights activist Zaheer Jan has been filing public interest litigations and writing letters to the authorities to provide special children with equal opportunity in education, a fundamental right under Article 21.

Jan told The Federal that as per the Rights of Persons with Disabilities (RPWD) Act 2016, implemented in Jammu and Kashmir after the abrogation of Article 370 from the Constitution of India in August 2019, every school should give admission to children with special needs.

The RPWD Act, 2016 makes it mandatory for all schools to provide admissions to children with special needs.

“Despite government rules and regulations, children with disabilities are unwelcome in the mainstream school system in the union territory. They are treated like second-class citizens. As there are no education and health facilities for disabled children, in a place which has been witness to conflict for ages, the childhood of these children has been destroyed due to the apathy of the authorities,” added Jan.

Earlier, the National Education Policy cell of the Jammu and Kashmir Directorate of School Education (DoE) after receiving a notice from the National Commission For Protection of Child Rights (NCPCR), instructed that no school — government or private — in the union territory can deny admission to children with special needs. The NCPCR notice was the result of a plea submitted by Jan on behalf of hundreds of parents of children with disabilities.

Can children be hopeful for a better tomorrow?

Speaking to The Federal over phone, Mohammad Iqbal Lone, commissioner for persons with disabilities, Jammu and Kashmir, said that Samagra Shiksha under the Department of School Education and Literacy has conducted a baseline survey of children with special needs in Jammu and Kashmir.

“The survey results should be out soon. Then we will have an exact number of children with various disabilities in different districts of the union territory. The survey will give us a clear picture of the educational status and rehabilitation measures available for the children,” he added.

In the year 2018-19, the Ministry of Human Resource Development or MHRD launched Samagra Shiksha – an integrated scheme for school education covering children with special needs from classes I to XII. The scheme is governed and regulated by the provisions of the RTE Act 2009.

Lone informed that 1.76 lakh people have got disability certificates in Jammu and Kashmir under the Unique ID (identity) for Persons with Disabilities, or UDID scheme. “When it comes to institutional care, there are a lot of facilities in Jammu and Kashmir. In non-institutional care, there are three rehabilitation centres — supported by the government — for children with special needs. The government works closely with the NGOs,” he added.

Acknowledging that a lot of children with disabilities are denied admission to schools, Lone said it’s an issue not just specific to Jammu and Kashmir but across India.

“We have to remember that Jammu and Kashmir is the last place in India where the RPWD Act 2016 was implemented after the abrogation of Article 370 in 2019. The process of bringing special children into the education system is evolving across the union territory. The education department has appointed nodal officers for this specific purpose. We are hopeful the gaps will be removed soon.”

According to Samagra Shiksha, 21,000 children with special ‎needs are enrolled in various schools across the union territory. Officials of the Department of School Education, Jammu and Kashmir, maintain that 64 fully equipped ‎resource rooms have been constructed wherein 83 special educators/resource persons are working to provide educational as well as ‎therapeutic support to the children. At least, 5,000 children were provided assistive devices ‎under Samagra Shiksha in 2023.

‘Children with special needs are treated like ajuba’

Baramulla-based businessman Shafiq Rehman, whose son Zunoon has autism, feels completely dejected because of the non-committal and discriminatory attitude of the government towards children with disabilities. “We never got any help from the government. The authorities don’t care about children with disabilities. They are treated like some ajuba (wonder). We don’t see any attempts on the part of the government to bring disabled children into the mainstream education system,” said Rehman.

Zunoon, 10, who has a speech impairment, needs an attendant 24X7. Since 2021, Zunoon has been going to a special school—Dagger Parivaar School — in Baramulla. The school is an initiative of the Chinar Corps-Indian Army and Indrani Balan Foundation, a Pune-based NGO, for specially-abled children.

There are around 40 children in the school who have disabilities like autism, down syndrome and hearing impairment, among others. “He attends the school for two hours a day. In the school, he gets occupational therapy. The school does not have special educators to help the children,” rued Rehman.

Zunoon was diagnosed with autism when he was three years old. In 2017, Rehman shifted to Srinagar to provide education and healthcare facilities for his son. The child was admitted to Delhi Public School, Srinagar — which has a learning resource centre for children with special needs. “My son’s condition had improved a bit during his time at Delhi Public School. However, we have to return to Baramulla due to the tense atmosphere in the wake of the abrogation of Article 370 in 2019,” said Rehman.

In May 2023, activist Jan started a campaign, Inclusive education for children with special needs as per the RPWD Act 2016. Some of the main demands of parents raised in the campaign are to provide inclusive education to children with special needs, vocational training for them and appointment of special educators in government and private schools across Jammu and Kashmir. "Our demands are yet to be met by the authorities," said Jan.

Woes of working mothers

Dr Gazala Ahmed, an ophthalmologist from Anantnag, said working mothers with children with special needs, hardly get any support from the authorities. Her son, 6, has mild autism. Last year, when Dr Ahmed, who works in a government hospital, sought leave to take her child to Delhi for treatment and therapy, her superiors were non-supportive.

“I had to beg for my leave. I was allowed only 30 days leave from work instead of the 90 days I had asked for. We had to travel to Delhi and these treatments take time. My superiors know my child's condition, but they refused to understand my situation. As it was a short period of therapy and treatment, it did not do any good to my son,” added Dr Ahmed.

Dr Ahmed said that since childcare leave of two years is every working mother's right, she was discriminated against by her superiors. “I also attend night duties in the hospital. During that time my son is alone at home. I can’t hire a nanny to take care of my special child as they are not trained enough to do so. I can’t leave my job also as I need money for my son’s treatment.”

Moreover, her husband, a doctor, is posted in The Line of Control (LoC)-- a military control line between the Indian-and-Pakistani-controlled parts of the former state. Thus it is only Dr Ahmed who is taking care of her child. “My husband is away from home for five years as he is posted at the LOC. Despite orders from the government ensuring that parents with disabled children should be posted close to home, authorities are not approving his transfer,” said Dr Ahmed.

As far as her son’s schooling is concerned, Dr Ahmed added that schools don’t have special educators and infrastructure to take care of her child who needs speech and occupational therapies. When it comes to his therapies, Dr Ahmed takes her son to a centre in Srinagar regularly as even the government hospital in Anantnag has bare minimum facilities for specially-abled children.

‘I want my daughter to get a good education to be independent’

Eleven-year-old Syed Minha Muzaffar from Srinagar loves to greet everyone with a "hello". Then she asks, "How are you?". When she is asked about her well-being, she answers with a smile, "I am fine."

Her mother Nuzhat Qazi, a government lecturer, told The Federal that her daughter had become a “chatterbox”. “My daughter talks a lot, these days.” It was not a mother's complaint but rather an excitement that her daughter who was unable to utter a word a few years ago, is now talking relentlessly.

Minha has a developmental delay. Qazi’s only wish is that her daughter gets admission to a school of her choice. The school is not giving admission to my daughter as she is a child with disabilities, rued Qazi. “I want my daughter to get a good education to be independent. I don't want her to be dependent on anyone, not even on me. She is a smart kid. If she gets good education and support, she will excel in her life.”

The “discriminatory attitude of the school” in denying admission to Minha has caused great anguish to her mother. Qazi says she has developed depression and is under medication. “Please help my daughter to get admission,” she pleaded.