SUPPOSE you were pregnant and the doctors told you that some tests were showing that your child had certain chromosome configurations that would likely result in significant differences in your child as compared to other children. Would you continue with the pregnancy? Or would it depend on the degree of challenge the child would be likely to face — the quality of life, the extent of support available to her, and your own wealth level? What is the role of the state?
This is not a hypothetical situation. Many parents are confronted with similar questions. Or they ‘choose’ not to have tests done, when pregnant, to not know if a deviation is to be expected. These are not easy questions to answer and I am not, in this short article, going to attempt to answer them. But I do want to point out a few things that are pertinent to the situation in Pakistan. Something we confront every day.
I am currently researching the area of disability and education. More precisely, with colleagues, I am trying to study the educational experiences of children with disabilities in Pakistan. What services in education are offered to these children, who offers them and how do children, parents and families negotiate the space for educational services?
One overwhelming sense, across all kinds of disabilities, is that, as a society, we are badly failing children with disabilities. The government is able to offer few services. And across many of these, quality is a big issue. The private sector provision of services — though quality may be less of an issue here — can be very expensive if offered on cost or on the basis of profit, and so is available only to children from richer households. If these services are offered under a philanthropic arrangement, the programmes are much smaller and very difficult to scale.
Where children with disabilities are concerned, we are failing in our responsibilities.
We also know that for almost all disabilities, early detection and early intervention are not just important, they are crucial. Early detection allows early intervention. Quality early interventions allow children to develop their full potential irrespective of the challenge they might face.
In the US, early detection processes are triggered immediately after birth. If a red flag is raised about the possibility of disability, the diagnostics kick in. And if a challenge is diagnosed, there is an entire process for determining what sort of support the child is going to require in the early intervention period (0-3 years). After early intervention, the support moves to preschool and then to school. Individual education plans stay with the child throughout the educational journey. Most of these services, especially in the years the child is in preschool and in school, are provided by the state.
For example, if a child has Down Syndrome, the early intervention period might involve support or therapy from as many as six experts and counsellors. And this might continue in school. Not surprisingly, there is plenty of evidence that these interventions make a huge difference in the life of the child, the parents and the family.
Pakistan doesn’t have a similar system. We do not even have experts in all the relevant fields. And this is not just an issue of the US being rich and Pakistan being a developing country. It is an issue of priority and obligation as well. Data shows that some 12 per cent to 14pc children in any population might face one form of challenge or the other. Are these not our children? Do they not have the same rights as other children?
If you are tempted to take the awful view that ‘when we cannot even provide for normal children why should we worry about children with disability’, rethink your position. Rights are not and should not be subject to a child’s particular circumstances. But if you insist on it, why should we worry about anybody’s child? What could be the reason for public education then? Here I quote from the memoirs of a parent of a child with Down Syndrome:
“Jamie has no idea what a busy intersection he’s landed in: statutes, allocations, genetics, reproduction, representation — all meeting at the crossroads of individual idiosyncrasy and sociopolitical construction. ‘Value’ may be something that can only be determined socially, by collective and chaotic human deliberation; but individual humans like James are compelling us daily to determine what kind of ‘individuality’ we will value, on what terms, and why. Perhaps those of us who can understand this intersection have an obligation to ‘represent’ the children who can’t; perhaps we have an obligation to inform our children about the traffic, and to inform the traffic about our children. As those children grow, perhaps we need to foster their abilities to represent themselves — and to listen to them as they do.
“I strongly suspect that we do have those obligations. I am not entirely sure what they might entail. But it is part of my purpose, in writing this book, to represent Jamie as best I can — just as it is part of my purpose, in representing Jamie, to ask about our obligations to each other, individually and socially, and about our capacity to imagine other people. I cannot say why it is that we possess the capacity to imagine others, let alone the capacity to imagine that we might have obligations to others; nor do I know why, if we possess such things, we so habitually act as if we do not. But I do know that Jamie has compelled me to ask these questions anew, just as I know how crucial it is that we collectively cultivate our capacities to imagine our obligations to each other.” (Life As We Know It by Michael Bérubé)
Do we have obligations to others? What are those obligations? Clearly, some obligations are present for us as individuals, as a society and for our state as well. Where children with disabilities are concerned we are failing in our obligations, and quite significantly. I give no solutions in this article as solutions are aplenty. The real question is, as individuals and as a society, do we want to move towards these solutions or not?
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 11th, 2022