Bengaluru: “Nobody accepted my child into a mainstream school,” said Sudha Madhavi, whose child, Raju has epilepsy, autism and a learning disability. She had to teach her son at home all by herself.
“I am alone fighting for my child,” she told The Wire.
Teachers have said that he can’t sit in one place, that he has difficulty learning what is being taught and that he disturbs others. “What can I do? I have to accept the social norms, right?”
While Raju eventually managed to study in a vocational school, not every child with a disability is admitted to mainstream educational institutions. In fact, out of 78.64 lakh children with disability in India, three-fourths of those aged five years don’t attend any educational institution, according to a 2019 UNESCO report.
Additionally, 12% of the children with disability have dropped out of school and 27% of children with disability have never attended any educational institution.
“My child was not accepted into the two mainstream schools that were near my house in K.G. Halli,” the mother of a child with a disability (she didn’t wish to be identified by the schools) told The Wire. K.G. Halli is in Bengaluru. “The school authorities said that she was not normal, so they can’t give admission to her.”
Her daughter has had cerebral palsy since birth. Her mother recalled that she scored well on the entrance tests that she wrote for acquiring admission to Class 2 in the school. But the school management denied admission to her saying they didn’t want to take responsibility for the child. They couldn’t give special attention to the child as she was not “normal,” the mother said.
The mother asked for her daughter to be enrolled for just one month. However, the administration asked her to enrol her child in a special school instead. “They said that they will not even enrol her in the school for even one day,” she said. She didn’t try elsewhere after that because she said she didn’t wish to be embarrassed again.
Sometimes, the problem starts with accepting that a child has some special needs. That is what happened with Vishra Mahmoud. Her son, Mahmoud Fizarullah, has had epilepsy since birth. Epilepsy is a central nervous system disorder that causes seizures. It affects about 50 million people worldwide, about a fifth of whom are in India.
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“Despite this prevalence, we as parents couldn’t recognise and accept that he has a problem,” Mahmoud told The Wire. Her son had his first epileptic episode when he was seven years old. It took them around six months to figure out what the problem was. “Once, he was seizing for an entire day, and that is when we took him to the hospital,” she recalled. “Indian parents usually find it difficult to accept that their child has an issue.”
Fizarullah was enrolled into a mainstream school at first. When the school authorities couldn’t understand his disability, they would tell his mother, “there is something wrong with your child.” However, they dismissed what they saw as just mischief and disobedience, his mother said. The school failed him from his classes on multiple occasions as well.
According to Mahmoud, there were also days when he had had seizure episodes in school but no one helped him. When she went to school herself after Fizarullah had had a particularly long episode, she said she was told, “Your child has a problem, so don’t come here.” The last straw was in Class 5, when the school’s principal forced him to drop out. “They told us that they don’t want to be responsible if something happens to my child,” Mahmoud said.
Some children like Fizarullah do find a place in mainstream schools but they have a tough time learning and fitting in. “I had to personally go to the school and make the teacher understand how [they could] help my child,” Sharda, parent of a child with an intellectual disability, told The Wire. In fact, according to a May 2021 report by an NGO called Inclusive Education Initiative (supported by the World Bank), 90% of parents and caregivers in India faced obstacles to learning, especially during the pandemic.
“The children have to deal with bullying issues from their peers as well who might not understand how they are different from other children,” said Kavitha Nair, a special education consultant in Bengaluru.
“Once my child came home from school, and he was naked as his peers in the school were bullying him,” Mahmoud said. Fizarullah’s school uniform was torn and only his underwear was visible, she said. Other children in the school would scratch him with a circular or a pencil. “He would come home with all these marks. In fact, I have pictures of all these, to store as memories,” she said as she quickly scrolled through the pictures on her phone.
The school never addressed her complaints nor did it pull up the students who had caused Fizarullah harm. When asked, the authorities would simply say, “They are just playing with each other. You have to take care of your child, he is the one who is not studying well.” “Eventually,” Mahmoud added, “we realised that the problem was with us only, and we accepted it and took him out of the school.”
According to the enrolment statistics of children with disability in schools in India, their number has increased in Classes 1 to 4 – but not at higher levels.
Representative image. Photo: LCCR/Flickr CC BY NC 2.0
A lack of inclusive policies
A part of the problem lies with understanding the kind of disability a child has, Rustom Irani, a disability rights expert in Mumbai, said. “We still have not arrived at a specification at what kind of disability exists.”
Even if some children finish studying in mainstream schools, they may have difficulty entering a college that doesn’t have the same comfortable ecosystem that the school created for them, he said. “This is what happened to me,” he said. Irani wanted to pursue film studies in India but couldn’t because his options in the country weren’t disability friendly.
Second, the existing laws that govern education for persons with disabilities aren’t clear. The Rights of Persons with Disabilities Act 2016 states that educational institutes should “provide reasonable accommodation according to the individual’s requirements and provide necessary support, individualised or otherwise, in environments that maximise academic and social development consistent with the goal of full inclusion.” But according to a May 2020 review by the Vidhi Centre for Legal Policy, the terms ‘reasonable accommodation’, ‘individualised support’ and ‘full inclusion’ haven’t been elaborated, leaving room for arbitrary implementation.
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Nair, the special education consultant in Bengaluru, said school policies should be revised to be as inclusive as they can be and involve all the stakeholders in the process. Additionally, authorities should be educated about what inclusion means and the multiple levels involved. And when implementing the policies, necessary changes need to be made in the school environment, she said.
However, many educational institutions in the country are not designed to cater to the needs of children with special needs. A 2019 report by an NGO named Samarthyam found that schools in Hyderabad didn’t have accessible toilets and entrances, information and communication systems, accessible routes and drinking water facilities, and ramps. The study also found that infrastructure in schools was considered unsafe for children with disability due to lack of awareness about access standards among construction personnel.
In Karnataka, Seva-in-Action reported that special educators in mainstream schools have asked for disability-wise training and subject-specific resources that cater to them. It also found that some 52 schools in the state didn’t have disabled-friendly toilets, 83 schools needed more ramps and 88 needed more handrails.
Irani called this a catch-22 situation. “Mainstream schools say that they do not have many special children enrolling for admission and hence, they do not have inclusive infrastructure,” he said. But parents of children with disability say that they can’t enrol their children in these schools because of lack of such infrastructure.
The issue of lack of inclusive education is exacerbated by the lack of trained special educators in mainstream schools – as illustrated by the experiences of Sudha Madhavi, Vishra Mahmoud and Sharda. “Sometimes, teachers are not equipped to handle these children, because their training doesn’t equip them with what they need to know,” Nair said. Apart from a lack of educators, mainstream schools also have too few resource rooms and materials.
The Sarva Shiksha Abhiyan scheme’s objective is to provide inclusive education by employing five ‘inclusive education resource teachers’ per block. But special educators have pointed out that there are fewer trained teachers than required. “Normal teachers only teach these children because there is no sensitisation,” Kalpagiri, a special educator in Hyderabad, said.
Parents of children with special needs have had difficult experiences with ‘special schools’ as well. After her experience with a mainstream school, Mahmoud said she took Fizarullah to a special school for admission – but came away disappointed.
“Special schools were trying to make a [buck] as well,” she said, while talking about Rs 3.5 lakh fees for three months. The teachers there wanted to have Fizarullah participate in outdoor activities but weren’t aware of the consequences. “He came back home and had a seizure for a long time, after he was made to play football in the hot weather,” Mahmoud said.
The school at which Fizarullah is currently studying only goes up to Class 8. His mother expects to relive many of the same difficulties soon, once he needs to start Class 9.
Anisha Reddy recently graduated from the Indian Institute of Journalism and New Media, Bengaluru.
This article was first published on The Wire.
The featured image is an illustration by Pariplab Chakraborty. To view more such illustrations, click here.