Visibility and inclusion- advancing the case of children with disabilities

An invisibility cloak is a prop that is sure to excite children; what better than a touch of magic, to vanish, disappear for others, even when you are right there. But for children with disabilities, being invisible is a terrible fact of life – being counted, is a challenge. The cascade of other inadequacies in society that inhibits children with disabilities from achieving their full potential continues to be a call for action – on the part of communities and governments. With World Disabilities Day observed in early December, it is time to evaluate what more needs to be done, acknowledging that the barriers are physical, but also much more. 

No disaggregated data

A recent UNICEF report reveals stark disparities in access to rights and services for the nearly 108 million children with disabilities in Asia and the Pacific. Birth registration, in particular, is a fundamental human right. Yet for many persons with disabilities, especially children, the process is riddled with barriers. Tanja B. Sejersen, and Manal Hassan of the ESCAP’s (United Nations Economic and Social Commission for Asia and the Pacific) Statistics Division, say that a number of children in the region do not even have a birth certificate – thus impeding their access to basic rights, services such as health education and social protection. They argue, in an article, that “Civil registration, the official recording of life events such as births, deaths, marriages and divorces, is more than paperwork. It’s a gateway to belonging.” 

“In terms of birth certification, in India, there’s no explicit discrimination on the basis of disability,” says Pratik Aggarwal, executive director, ASTHA, a non governmental organisation working to include children with disabilities. But he hastens to add: “When it’s a larger ecosystem – how do you count children with disabilities? Apart from the Census and other surveys, we really don’t have disaggregated data on the health conditions of children with disabilities. The National Family Health Survey should actually cover children with disabilities, but it doesn’t. So, we don’t have data on how many children with disabilities have been immunised, or how many children with disabilities are enrolled in anganwadis, how many of them have malnutrition. This is also undercounting of disability.”  

When a parent has a disability, or if both parents have some form of disability, it can be a nightmare trying to access hospitals and government systems in order to access treatments and services meant to assist them, including trying to figure out interventions for their child, school admissions, and immunisation, says Mr. Aggarwal. Then the efforts to ensure the child gets a gainful education and is trained to be independent can be excruciatingly painful.

Expanding early intervention  

Srinivas Tata, director of ESCAP’s Social Development Division, says the “Incheon Strategy to ‘Make the Right Real’ for Persons with Disabilities in Asia and the Pacific includes a goal to expand early intervention and education of children with disabilities. In 2022, ESCAP assessed the region’s progress towards Incheon Strategy goals, and found most countries in the region were already implementing or in the process of designing early childhood intervention programmes.” However, the quality and accessibility of these programmes varied, and many followed the medical model of disability rather than the social and rights-based model.  

“Overall,” he says, “children with disabilities are significantly less likely to attend and complete school – from preschool to upper-secondary school – than children without disabilities. Accessible learning environments, early identification and intervention capacity, and inclusive teaching and education are critical, but are not uniformly available in most countries. In addition, the COVID-19 pandemic caused a disruption in education, and those in need of special education models or strategies suffered more than children who did not need such interventions.  

Early intervention and education are critical, Dr. Tata adds, as they have life-long impact. “But change can only be accomplished if the ecosystem becomes more accessible and inclusive. For instance, without adequate and accessible disability benefits, children may not be able to access early intervention. When accessible public transport doesn’t exist, children with disabilities in rural and remote areas won’t be able to go to school easily. And unless the labour market becomes more inclusive, even highly educated persons with disabilities would fail to be an active member of the economy,” he explains, indicating the disabling cascade that impacts on the life of children with disability. 

As Sejerson and Hasan add: “Inclusion isn’t just about access—it’s about recognition. It’s about ensuring that every person, regardless of ability, is counted, seen and valued.”