Attitudes on education.

In general, the child’s parents jointly decided on whether or not to send their child to school, even in an extended family household. A common reason for sending children to school was that many considered education essential to get jobs and therefore, a better life. Some parents felt that their child with a disability would not be able to perform jobs that were prevalent in their area, such as jobs relying heavily on manual labour, and so considered education important for gaining access to desk-based jobs.

“We are educating him because he must not be idle and stay in the house without knowing anything…. We provide education for the sake of education…. Currently, many are working from home on the computer; likewise, he can also do that work through education; without education, he cannot work. Education might have an important role; if he has education, there will not be any problem.”

(Father of a boy, mobility limitation–“cannot do”)

Some parents, particularly parents of children with intellectual disabilities, reported that schooling could also help with their child’s overall development. Some acknowledged that their child may not be gaining the same academic skills as other children, such as literacy or numeracy, but they nonetheless felt it important for them to be with their peers for socialisation:

“Everyone in the family [decided to send her to school]. Only if she studies, there will be brain development. Let her go, until she wants to go. That’s why we send her. If she is inside the house her mind will get affected so, if she is going to school, she will have some clear thoughts.”

(Mother of a girl, cognitive limitation- “a lot of difficulty”)

Few children (8 out of 38) had ever been to a school had started school late between the ages of 6–8 years, however, the commitment of some parents to sending their child to school was evidenced by the personal efforts they took to ensure their child attended. Several parents spent significant time and effort dropping and picking up their child at school and sometimes also visit their child in school during the lunch break. For example, the father of a child having a lot of difficulty with mobility stayed at school throughout the day to provide assistance to his child. Almost all children in school indicated that they liked going to school. However, few of the children out of school reported not liking school, often linked to instances of teasing or abuse when previously enrolled.

The main reasons reported for why children were not in school were complex and often involved multiple concerns or barriers. Cited reasons included poor availability and affordability of transport, fear for the child’s safety and adequate management of their impairment (e.g., falling down due to mobility impairment or seizures with the embarrassment of getting clothes dirty or soiled), the child being disruptive in class or getting teased or abused by other children. Some caregivers questioned the value of school, particularly for children with intellectual impairments or profound sensory impairments, and if their child would be learning anything in school.

“They did not teach him [went to school till 7th standard]. They can teach him only when he can speak; he cannot speak, so he went, sat idly and came back we cannot teach him, and he cannot even talk.”

(Mother of boy, cognitive limitation–“a lot of difficulty”)

Gender could also intersect with disability as a factor hindering school enrolment. Menstrual hygiene management was an additional concern for girls after puberty and caregivers encouraged them to just stay at home while menstruating. Importantly, attaining puberty was also a reason for a parent to discontinue sending their daughters to school. Teachers’ attitudes could also affect decisions to send children to school. In three instances, the teachers had advised the parents not to send their children to school. In these instances, teachers stated that the child was or was perceived to be restless and disruptive in class.

Choice of school.

Among the 38 children who were currently or ever enrolled in school, 32 children attended regular government schools. These were primarily co-education schools, where girls and boys studied together. The cost of sending a child to a government or a private school was a major determinant in the choice of school. There is no school fee in government schools, and the children receive free books and uniforms until class 10. Still, most caregivers reported miscellaneous expenditure for school bags, stationery, and replacing lost books and notebooks. Most caregivers reported that they would prefer sending their children to a private school, as they were perceived to offer a better-quality education. Yet only two children were going to private schools, where caregivers reported that their children were doing well in school. The costs associated with private schools, however, were difficult for many families to meet.

“My husband told me that we will not be able to pay the fees [for a private school], so we will admit him in government school. I said we have only two children, we have to educate them well… but since my husband passed away I am not able to pay the school fees [private school]…. Right now, I am thinking of stopping him from this [private] school. I will think about a school, where I do not have to pay so much.”

(Mother of a boy, vision- “a lot of difficulty”)

Only two children had ever attended a special school for children with disabilities. One child with cognitive impairment attended a special school mainly to receive physiotherapy and because it was felt he would be disruptive to others in a government school. Some caregivers had been advised to send their child to a residential special school, however, they did not want to be separated from their child. They also perceived that care at residential special schools would be inadequate. For example, the caregiver of a child with a cognitive impairment explained the negative experience they had in sending their child to a special school. These negative experiences ultimately led them to withdraw their daughter from the special school and enrol her in a government school, even though they felt her education may have been better in this setting.

“It [residential special school] is a hostel for children with poor brain development. That place was full of flies. Then, a week later they shaved her head, without asking us… She cried when she saw us… if she was there in the hostel, she would have got some knowledge.”

(Aunt of a girl, cognitive limitation- “a lot of difficulty”)

Regularity of going to school.

Most enrolled children attended school regularly except when they had an occasional illness such as fever or cold. However, over a third reported being absent from school two more days in a week for reasons like not having anyone available to drop them at school, lack of available transportation, worsening severity of the disability and underlying health conditions, and fear of getting scolded by the teachers. For example, the mother of a girl with progressive mobility impairment described that her daughter often refuses to go to school even though the children and teachers at school were friendly to her as she is worried about falling over and hurting herself:

“… She is been weaker in this one year; it [disability] increased after giving her tablets bought from Madras … It [going to school] depends on her mood…. She is falling and getting injured… if she wishes to go to school, she will get ready and go. Otherwise, even if we make her get ready and drag her out of the house and beat her up, she will not go to school. Then, after going to school she will keep crying and the teacher tells me not to beat her and let her come to school if she can.”

(Mother of a girl, mobility limitation–“cannot do”)

Getting to school.

Many children were dropped and picked up from school by their family members for multiple reasons like difficulty in walking, as a safer option (as they got pushed or teased on the way), and for carrying the school bags. They went on a bicycle or motorcycle or walked to school if they could. Therefore, for some children, attending school depended on the availability of a family member to accompany them. Getting children dressed and ready to go to school is an additional challenge for families, particularly those with self-care and cognitive limitations. Difficulty in reaching school because there was no one to accompany the child to school or transport being costly led some parents to discontinue their children from schooling. One of the mothers described the challenge of sending their child to school as:

“I stopped him because it is difficult to go to school and come back. There is no bus in this village. We used to go by auto, it is Rupees 100 to drop him at school and Rupees 100 in the evening… he studied like this for two years… so we stopped him as we found it difficult.”

(Mother of a boy, mobility limitation–“a lot of difficulty”)

Physical accessibility.

Children, particularly those with mobility limitations, faced difficulties independently moving around in the school. For example, some experienced challenges to enter classrooms that were not on the ground floor, going to the playground and toilet or going to the teachers’ or headmasters’ room. This poor physical accessibility restricted some children with disabilities to their classrooms, preventing them from fully participating in all school events, such as school assemblies and social time on the playground during breaks. Requiring children to ask for assistance from their teachers and peers to move around the school could lead to feelings of embarrassment, lack of autonomy, and social exclusion.

“He stays alone in class when other children are playing. I asked why he does not ask his classmates to carry him to the ground and back to class, and for that he replied–‘how many days will they take me in and out of class’. Not a single child is with him at that time, he stays alone in class on the fourth floor.”

(Mother of a boy, mobility limitation–“cannot do”)

The accessibility of school toilets was also a challenge. Several caregivers and children reported that the toilets were generally poorly maintained, with issues such as poor cleanliness, no proper wall around the toilet, and toilets being out of service (e.g., locked, no running water).

Even if on-site toilets were in a usable condition, some children with disabilities faced additional barriers in using them. For example, caregivers of children with cognitive impairments instructed their children to come home if they needed to use the toilet because they are unable to clean themselves. Overall, about a third of children in school–particularly children with mobility and cognitive impairments—returned home to use the toilet. Returning home could lead to time out of school or shortened days. Further, children with physical impairments sometimes needed assistance in using inaccessible on-site toilet facilities. This assistance was often provided by peers, which could lead to feelings of embarrassment and awkwardness:

“They [peers] are ready to help but my son is not ready to accept their help. All his classmates are physically equal to him, yet my son fears that they might drop him…. children need to lift him. The second reason is my son feels embarrassed, so we go to school to be with him.”

(Mother of a boy, mobility limitation—“cannot do”)

The mother of a 13-year-old girl with mobility limitations discouraged her daughter from using the school toilet because of a lack of privacy. She said,

“She goes to toilet only after coming back home after she attained puberty…. I tell her not to go in school and tell her to use at home. Toilet is not good. It is just open without wall… So, I tell her to come and use at home. She will rarely use in school.”

(Mother of a girl, mobility limitation–“a lot of difficulty”)

The lack of accommodations and poor physical accessibility of schools led in a few instances to families making significant sacrifices to support their child’s schooling. For example, the mother of a boy with a severe physical impairment explained how his father could not go to work because he would accompany their son to school to provide needed assistance:

“Someone needs to be present in school with him to open the lunchbox and water bottle, carry him when he wants to go to bathroom…., his father stays there, he feeds him food, takes him to bathroom, and brings him back to home from school. My son will say he wants to go to bathroom after having lunch.”

(Mother of a boy, mobility limitation–“cannot do”)

Resources for inclusive education.

In addition to poor physical accessibility, most schools did not have adequate resources to support inclusive education, particularly for children with sensory and intellectual impairments. For example, many children with visual impairments faced difficulties in reading from the classroom board even when they were seated in the front row. Some had come up with workarounds to gain the required information, such as by asking their peers for their notes:

“In school, anything written on the board will not be visible for me…. Only partially it will be visible, Sir. When classmates write, I look at that and write.”

(A boy, visual limitation—“a lot of difficulty”)

Children with profound hearing impairments faced challenges in learning without adapted communication. Some were managing to communicate basic information with friends and teachers with gestures, but communication of more complex concepts such as lessons were challenging without formal sign language. A mother said,

“She will not read… she writes the words…All the teachers understood that this child cannot hear… they arrange a person to write [her exams] and get her to pass… she is studying in 10^th, what is the use? She will just go to school… they (teachers) will tell patiently and if she did not understand that they will just leave it.”

(Mother of a girl, hearing limitation–“a lot of difficulty”)

The lack of accommodations could lead to poor learning outcomes for some children. As reported by caregivers, most children were average in their school performance. Still, some caregivers had received complaints from teachers about their children regarding their homework, poor performance in studies, or not being able to complete parts of the lesson (e.g. performing recitations because of a hearing or cognitive impairment), and had advised parents to help the children to learn at home. There was also an indication that class level and marks do not always accurately reflect the actual learning of children with disabilities, particularly children with sensory or intellectual impairments. For example, some children were in secondary school but could not read and write. Further, the use of scribes was reported in seven instances amongst children with sensory and intellectual impairments, in which the school appointed a scribe to write for children who were appearing for board exams so that they would be promoted to the next class:

“Teachers made someone to write her exam and passed her… she does not know to answer so that they are appointing someone to write for her; she only knows the question and not the answer.”

(Mother of a girl, cognitive limitation—“cannot do”)

“The headmaster said to stop sending her to school, and they will deploy either a child or scribe to write exams for her…. she was promoted automatically till 8th standard; they are saying a scribe will write because she is in 10th standard”

(Father of a girl, cognitive limitation–“a lot of difficulty”)

Relationships with peers.

The experience of children with their peers at school varied from being helpful to distressing. Caregivers and children alike reported instances of peers playing important roles in social and academic inclusion, such as by carrying their school bag, helping in climbing stairs to reach the classroom, taking them to the toilet, fetching drinking water for them, protecting them from other children who might bully them, and sharing notebooks and helping them to write. Most children in the school reported that spending time with their friends was a major motivator in attending school. Sometimes peers helped them to get back home after school and relayed important information to caregivers.

“As soon as we leave him at school, they [friends] will take his bag and they will keep it in his place… If he asks them to bring some water when he sits and eats, they will bring some water and give it to him. If he wants to go to any nearby room, for example, to the headmaster’s room…his friends are helping”

(Mother of a boy, mobility limitation–“a lot of difficulty”)

Still, many children experienced negative interactions with their peers. Over a third of children who had ever been to school had been teased or abused by their peers. Often bullying was disability-targeted, with reports of children being called derogatory names related to their impairments or being picked on because they were perceived to be easier targets (e.g. difficulties running away or reporting bad behaviour to teachers). Children and caregivers reported incidents such as other children stealing their personal items, name-calling, making fun of their poorer school performance, and even being physically beaten.

“Yes, I had questioned them [for calling me names] and fought [with children bullying me], Sir. Because my condition is like this, they all call like that, Sir. They frequently tease me, Sir. Even a single day they do not call me by name, Sir. My classmates call ‘Jhaadai, Jhaadai’[squint-eyed].”

(A boy, visual limitation–“a lot of difficulty”)

“She says -I do not know to read, for that other children are teasing me… She says—children tease saying that I do not know anything. While going to school she will tell me that this boy teased her, and that boy teased me. Boys, and sometimes girls also tease her.”

(Mother of a girl, mobility limitation–“cannot do”)

Even without overt discrimination, some children with disabilities were excluded from social activities at school. Generally, children who could manage to move around independently played with others at school, particularly boys and girls with hearing difficulties. Others, due to the fear of getting hurt, feeling embarrassed to ask for help to go to the playground, or because they might get mocked for losing the game, either were isolated by others or self-isolated, sitting alone in the class or playing indoor games.

“I don’t like to play because I will fall down… It [playground] is full of gravel I don’t like it… I will fall … I will not go to play. I will be sitting… They (friends) don’t call me to play because I will fall.”

(A girl, mobility limitation–“cannot do”)

Teachers’ attitude.

Several teachers were reported to have played positive roles for children with disabilities, such as by providing small accommodations like having children sit in front of the class or giving additional assistance with lessons, and by disciplining classmates who bullied children with disabilities. One of the caregivers said that a teacher living close by had encouraged them to send their daughter with cognitive impairment to school and even accompanied the girl to school.

“Her teachers look after her kindly. She is not able to hear and talk, right, so they will not hurt her, they will teach her and take care of her kindly.”

(Mother of a girl, hearing limitation–“cannot do”)

However, a third of children going to school at the time of the study and half of children who had ever attended school reported verbal abuse or discriminatory behaviour. For example, some teachers were reported to have made derogatory statements about a child’s disability that made the children and the family upset.

“I do not know whether he did something [wrong] or not. Sir [teacher] told him- I will make this eye also blind if you are not obeying… He [son] said that and he cried in the house… Sir [teacher] is telling- I will make another eye blind.”

(Mother of a boy, visual limitation–“a lot of difficulty”)

Further, some teachers discouraged families from sending their child to school, particularly if their child had an intellectual impairment or behavioural challenges. For example, caregivers indicated teachers found it difficult to cope if their child was hyperactive, needed assistance to move around, created disturbances in the classroom, fought with other children, or soiled their clothes. In four instances, teachers reportedly asked caregivers to stop sending their child to school.

“Her teacher makes her sit away from the other children. If they make her sit along with the other children, she can study, but they make her sit in a corner… The teacher told me not to send her there [school] except when the officials come [for school monitoring visit], for accounting purpose. All such problems are there.”

(Aunt of a girl, cognitive limitation–“a lot of difficulty”)