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They have rights too

APR 16 - Case 1: “In my 36-year-long journey, I have hardly lived a few years with a sense of human dignity,” said Pragati staring into my eyes. “What brought such a disaster in your life?” I asked him. With moistened eyes, Pragati said, “Mental illness.” According to Pragati, he had been sexually abused when he was six years old by a girl neighbour who was two years older than him. The early and forced sexual intercourse became a childhood fun for some months. But gradually, a complex sexual mindset developed in him. He secretly started watching his parents having sexual intercourse. On some occasions, he became a victim of homosexual abuse. He started to become deeply obsessed by such experiences with a sense of guilt during the rest of his childhood days.

Often, he would be lost in imagination of having sexual intercourse, and he was always afraid of going close to anybody of the opposite sex lest he lost control. The feelings of guilt ruined his healthy psychological growth. He failed to develop a healthy family relationship as well. As a lucky child growing up in an upper middle class family in Kathmandu, he was sent to the best school. The family put him in a hostel. They offered him every material comfort, but they never cared about his mental needs and wellbeing. His family failed to estimate mental health as a priority of life that may bring a tragic crisis in life, sometimes an irreparable loss, if left disregarded. This happened to Pragati.

Case 2: Sujina worked for more than 25 years in a drug factory in Kathmandu starting from her early 20s. She never thought that her work would bring permanent misery in her life. Contrary to her expectation of a peaceful and happy family, her working in a chemically affected environment resulted in her two children being born with intellectual disabilities. When she gave birth to these children with different needs, she was not aware of what really had happened to them. What could be the best that could have been done for them? She passed a number of years with the hope that they would improve. Finally, the children became a permanent burden to her family.

In the absence of appropriate schools to send children with special educational needs, Sujina has had no option but to lock the innocent children at home for the last 20 years . In fact, Sujina’s children represent the fate of the mentally impaired children in the country.

“The birth of mentally impaired children has brought many difficulties in our everyday life,” said Sujina. “There is a huge loss in economic productivity as one person is always required to look after them. Our social relationship has also been adversely affected. People invite us to social functions, but they tell us not to bring our mentally impaired children. Imagine, how much social hurt and void we feel for our children.”

Pragati’s family did not want to talk. They simply turned down my request for an appointment to talk in detail about their feelings. However, I have a few answers for Sujina, Pragati and families dealing with disability cases, particularly, people living with mental impairment and related disabilities. First of all, it is important for us to come out from the sense of guilt; however, that is not easy. While talking about parental emotion, no parents anticipate that their children may face disability consequences at birth or at some point in life. All parents expect and approach the birth of a child within the framework of a set of conceptions and expectations derived from culturally available ways of understanding the birth of an offspring. Parents naturally assume that their baby will be healthy, handsome and wise and have a winning personality. As soon as the baby is born, they seek immediate reassurance that their new son or daughter is “normal”; and at the first opportunity, the new mother fondly checks to see if the baby has the usual complement of fingers and toes.

But all parents are not equally lucky. They are not always able to read the signs of the birth of disability. Besides having toes, fingers and other physical indicators that define normalcy, children are likely to face disability consequences at birth, during their school-going age or during adulthood. Children or adults who are living with disabilities are innocent humans, and they have to assume disability as part of their natural life. But social, environmental, economic, biological and other forms of social injustice can be blamed as causes of disabilities. There is a strong link between social justice and the birth of disabilities.

In terms of human experience, all forms of disabilities share many similarities in the social context. Though arising from physical, mental or intellectual impairment, disability has multiple social and health implications. It is associated with social exclusion, suicide and vulnerability to poverty and premature death.

The Department for International Development (DFID), in a paper entitled “Disability, Poverty and Development” published in 2000, states that “disability exacerbates poverty by increasing isolation and economic strain, not just for the individual, but often for the affected family as well. Children with disabilities are more likely to die young, or be neglected, malnourished and poor. People with disabilities are denied education who are then unable to find employment, driving them more deeply into poverty. Breaking out of the vicious cycle of poverty and disability becomes more and more difficultu. This report presents the perfect truth of the life and experiences of people with disabilities.

People dealing with such different challenges and needs have to understand and realise that disability rights have a powerful human rights dimension, and they have equal rights in the distribution of resources to enjoy their rights. Promoting access to mainstream education for such children as well as campaigning to prevent disabilities should be a key government policy; and the government should ensure that adequate resources are allocated for this purpose. It is clear that in Nepal, thousands of children are facing major challenges in exercising their fundamental rights. It is urgent for us to demand social, economic and cultural remedies and respect for the human rights of such populations.

Jagannath Lamichhane

Posted on: 2010-04-16 11:56