Put yourself in the shoes of a little girl being denied a bus ride because the driver claims she looks ‘evil’, or a little boy left alone in the playground because the other mothers won’t allow their children to play with him. Imagine what it must be like to hear derogatory terms like muusala (loosely translated as ‘cursed’ or ‘bad luck’) or pissa (a mad person) constantly follow you in whispers, or to be laughed at in school because you can’t read and speak as well as your peers. Try to picture how you would feel if you were discarded by your community, rendered invisible and unseen just because you are different from what society has deemed normal.
The plight of differently-abled children and their constant struggle to survive in a world that views them askance is no secret. Differently-abled children make up an intrinsic part of our society, yet despite constant advocacy, policy making, and awareness-raising on local and international levels, they remain among the most marginalised and vulnerable groups of children in the world.
The Global Picture
The UN Convention on the Rights of Persons with Disabilities declares that every differently abled person is entitled to the full and equal enjoyment of all human rights and fundamental freedoms, including the right to accessibility, participation in public and cultural life, and the right to be included in the community. Simply put, they have the same rights we do. However, it is plain that the world has a long way to go before differently-abled children can be seen in a light equal to that of their ‘normal’ counterparts.
Often we find that in addition to having to deal with the challenges presented by their disability itself, many special needs children also face a multitude of social, attitudinal, and financial barriers which hinder them from being the happy, productive individuals they could otherwise be. Frequently hidden within their homes or confined to institutions, they are often denied the basic rights enjoyed by their peers, suffering isolation and discrimination on a global scale. They are also disproportionately vulnerable to exploitation, violence, and abuse, with disabled children seen to be 3 to 4 times more likely to experience violence than their non-disabled counterparts. Though we do hear a few inspirational success stories that part the dark clouds now and then, in most cases, differently-abled children continue to be blighted by stigma, judged as individuals by their disabilities and limitations rather than their abilities.
A WHO World Report on Disability reveals that there are over a billion people in the world living with disability. 5.1% of the world’s population below 15 years of age suffers from severe or moderate disability, with 0.7% facing severe disability. At first glance, the figures do not really appear significantly large, yet the actual numbers they represent ‒ 93 million and 13 million respectively ‒ are staggering. Statistics also reveal that out of the hundred million children with disabilities under five years of age, 80% of them are from developing countries like Sri Lanka.
What Is The Status Of Special Needs Children In Sri Lanka?
Statistical data on children with disabilities is scarce in Sri Lanka, as it is on an international scale, but the 2012 Census of Population and Housing reveals that 1.67% of the children between the ages of five and nineteen are living with disabilities.
When it comes to focusing on special needs children, Sri Lanka has not exactly remained idle. Initiatives to provide for and promote their welfare can be traced back to the early 20th century when a school for the deaf and blind was established in 1912. Over the years, a number of policies and laws have been enacted in the spirit of providing special needs children with their rights, like the 2003 National Policy on Disability, the National Action Plan for Disability (2013) and the Protection of the Rights of People with Disabilities Act. In addition to that, several government and private institutions dedicated to uplifting, enabling, and educating differently-abled children are currently in operation all over the island. For instance, a 2014 study reveals that there are 26 national special schools around the country, as well as 525 special units attached to mainstream schools. The first move to adopt integrated education took place way back in 1968, when special needs children were included in regular schools, and even now, inclusive education is widely practiced in most schools around the island.
This begs the question: with all these measures taken and such solid legal frameworks in place, why do differently-abled children remain so far away from achieving inclusion and equality?
Various existing issues tend to intersect and throw up countless barriers to equality and accessibility for these children. Chief among them are:
- Lack of implementation
- Lack of data on disability in the country
- Stigma, myths, and misconceptions
- Lack of awareness
For instance, being a developing country, many special needs children from rural areas are poor, with their parents and caregivers often unable to even eke out a living, leave alone focus on concepts like schooling and education. Poverty and disability often compound each other, and most special needs children from low-income families face a severe lack of resources due to impoverishment and lack of awareness.
Speaking about these children in rural areas, Malathi Kahandaliyanage, consultant special educator and behaviour therapist, and council member of the SLACD (Sri Lanka Association for Child Development), says that most schools in all districts do have special educational coordinators and teachers for children with special needs. However, many special needs children miss out on accessing these resources simply because their parents do not know that such resources exist and are completely unaware of the rights of their child. “Distribution of available resources should be streamlined, while creating awareness of the inclusive education policy at the same time,” she says, emphasising the importance of awareness-raising amongst rural communities. She also adds that support groups could be established in villages to act as the voice for these children and advocates for equality in education.
The Curse of Stigma
Stigma, whether self-imposed, imposed by society, or by parents and caregivers themselves, forms the root cause of nearly all the challenges faced by differently-abled children in the country. For instance, being a culture that thrives on superstition, it is not unusual for less enlightened people to view these children as bad luck or “evil”, or to believe that these children were born this way because they have “sinned” in a previous incarnation.
The social exclusion compounded by stigma creates an environment nonconductive to development, further pushing these children into isolation and invisibility. Parents and caregivers, too, face constant struggles in the uphill task of raising a special needs child, with many of them forced to soldier on with no support system in place. Community support could go a long way in paving an easier path for these people, but unfortunately, society is not always as understanding and helpful as they should be.
Kahandaliyanage explains that in Sri Lanka, being a predominantly Buddhist country, most people look at disability as Karma and a burden that need be borne by the family.
“People tend to look at the whole family with pity,” she says. “As a result, most of these children stay at home without any access to education.” She also points out that children who live in homes or institutions are often merely viewed as “poor souls” who can only live on alms and handouts. “The idea projected is that they are at the mercy of other people, and that they cannot live as a part of our society independently while contributing with their unique abilities.”
The notion couldn’t be further from the truth. Provided with the right resources and training, many special needs children have the capability of being productive members of the community in their own unique way. Proof of this can be seen in projects like CBL’s Sahan Sevana, a biscuit factory which employs intellectually-challenged individuals with the aim of empowering the differently-abled and shifting the way society perceives them. It is also not unusual to occasionally hear motivating stories of special needs children excelling in various fields.
“We need to emphasise that differently-abled children have something to offer to our society and that they too are a part of our social fabric,” stresses Kahandaliyanage, adding that as a country, we need to address this issue with awareness, advocacy, early detection, early intervention, identification, acceptance, and inclusion, providing these children with a platform to be the best they can.
To their credit, the Government does seem to be attempting to take steps to address the issue. For instance, according to Kahandaliyanage, the SLCDA has partnered the Ministry of Education, the Ministry of Health, and the Ministry of Social Services in an initiative to educate all stakeholders by conducting workshops to create awareness and educate teachers, parents, and first respondents about inclusion, integration, adaptation, and accommodation as well as the best practices to be implemented where special needs children are concerned.
Many differently-abled children and their parents dream of the ideal inclusive society, where they can go to school, visit a park, or go shopping for groceries without people gawking, staring distastefully, or calling out derogatory, hurtful comments. Of course, there is a long way to go before we can get there, but perhaps with one step at a time, we can reach our goal.
Featured image courtesy: icddelhi.org