“THE biggest thing in my success has been parental support. My parents made me accept my disability and built my confidence. My mother used to teach me and help me with my homework when I was in school. She used to teach me the alphabet with charcoal and puzzle games,” said one person from a sample of visually impaired students and young people we interviewed.
The odds are stacked against children with disabilities when they try to get a fair chance at accessing essential services and opportunities. Societal attitudes, even in our contemporary society, are brutal, to put it mildly. “You are blind, what is the point of talking to you”; “My two uncles who live with us ... think I am good for nothing and consider me a burden”. A mother of a blind child said sometimes relatives say that the birth of this child was the outcome of some sins of the parent. Comments like these have been commonly reported in our interviews with visually impaired children and their parents and teachers.
The state in Pakistan is also not doing what it should to provide the needed support and services to children who have a disability as well as their parents. There are very few schools for the disabled and these, by and large, are poorly resourced. There is a shortage of resources for assistive equipment as well as technologies and a severe shortage of trained teachers and caregivers. Transport facilities are scant. Mainstream government and private schools do not have effective ‘inclusive education’ programmes. There are almost no support programmes for families with a disabled child. One statistic to keep in mind, when thinking about state-provided services to children with disabilities is that though we know that 10 to 12 per cent of children in our population face one challenge or the other, in terms of disability, governments have spent only 2pc to 3pc of education budgets on providing education services to these children.
Though not-for-profit providers are working hard to fill the gaps and offer much better service in general, it is not enough, given the needs. Access to privately provided services, even when they are not for profit depend on the socioeconomic conditions of the family in question; hence, the poorest families, who are in most need of support, are generally not able to access these services. More importantly, it should be borne in mind that by law it is the state’s duty and responsibility to provide support services to every child and their family.
Parental support for children with disabilities can mean the difference between life and death.
The socioeconomic context of the family is significant but in our data and interviews, what emerges as much more important and decisive is parental support. Even here, it is the support, encouragement, the hard work and grit of mothers that comes out as a big factor in determining opportunity sets for children with disabilities.
A special education teacher told us: “Only those kids get ahead whose parents take an interest in them. This is true for general education too, but it is essential in special education as parents have to take a stand for their child’s education. It is not important for the parents to be educated; they just need to be concerned.”
A visually impaired student told us: “When I was a child, I had low vision and my mother used to make notes for me with a big board marker. Later, when I lost my vision, my mother would make notes and read them out to me. Even now in college, my mother makes notes for me.”
Another visually impaired student said that despite opposition from the larger family and neighbourhood and all kinds of rumours, her mother changes two buses to take her to school every day and then stays and waits in the lobby until school is over to bring her home. She does this in addition to looking after the other children and doing all the household chores.
Another mother started a grocery shop out of the front room of her house to get some extra money so that she can keep her special child in school and provide for his non-tuition school expenses. She works some 20 hours every day to keep things going.
Parental support is essential for building confidence in children. This is true in all contexts. But if a child faces a challenge, parental support becomes even more important. There has to be a champion for the child in the household and family: this champion fights for the rights and opportunities of the child. Across the world, we find parents a lot more involved with offspring who have disabilities so that they can work around the challenge their child faces. Even in Pakistan, a lot of not-for-profit educational institutions for disabled children have been created and are supported by parents whose children face these particular disabilities.
But the importance of parental support increases exponentially in a society like Pakistan where there is much stigma around disability, societal attitudes are primitive, and state-level support for children with disabilities, as well as their parents and families, is absent. Parental support, in this societal context, can mean the difference between life and death.
In our interviews, in almost every case where a child with a disability was able to get access to the needed services, which should have been there as their right but are not, has been due to exceptional parental support. And within the supportive household, the role of mothers cannot be overstated.
We, as a society, are asking a lot from parents — and quite unfairly. We can only hope that as the state starts to deliver on its responsibilities and as societal attitudes change, there will be less need for such high levels of commitment. But given the current status, this might be too far in the future; for the millions who face unfair odds right now, it is their mothers who will be the decisive factor in how well they do in life.
The writer is a senior research fellow at the Institute of Development and Economic Alternatives, and an associate professor of economics at Lums.
Published in Dawn, November 25th, 2022