S Karpagam’s 22-year-old daughter is often mistaken for being mentally-ill, though what she actually suffers from is intellectual disability. Highlighting the difference between the two is the key to increase the social acceptance of such persons with intellectual disability, say parents and activists, as the country observes another National Day for the Mentally-Retarded on Monday.
Experts say that an estimated two per cent of the population in India suffers from intellectual disability. In almost all these cases, it is the parents who have to face the challenge of managing a special child while dealing with the stigma of the society, starting with neighbours and relatives.
“As they cannot always express their feelings even to the caretakers, such children sometimes scream if they have stomach pain or such discomforts. In such cases, if the neighbours are not aware or understanding enough about their behavioural problems, it leads to problems,” says Karpagam, who discovered her daughter’s disability when she was six.
According to activists, those from lower middle-class and poor families have to bear the brunt to meet even the basic needs. These children require equipment and financial support and easier access to public transport among other needs. The most difficult issue is education. There are private schools, which come at a cost that most of the poor cannot afford.
“There is only one government school for these children in Chennai. And the Sarva Shiksha Abhiyan programme gives only half an hour therapy weekly, which is not sufficient,” points out Karpagam.
Equally difficult is meeting the increased expense for the children. According to many parents whom spoke to, particularly those from poorer families, the medicines are expensive, and the cost varies depending on the child’s condition. The `1,000 stipend that the State government gives cannot meet expenses, they say, seeking a substantially higher amount. A senior official with the Welfare of the Differently-abled department says the stipend will soon be hiked from `1,000 to `1,500.
As these children become adults, they can be initiated into vocational activities. However, it requires patronage from people — customers have to buy the items the children make, says S Sasikala, mother of a 23-year-old girl with intellectual disability. “If normal children are allowed to interact closely with these special children, the awareness about their difficulties and challenges would increase, which in turn would create a difference in the way they are perceived by the society as a whole,” she adds.
Experts say that managing intellectual disability changes from child to child, depending on the seriousness of the condition — mild, moderate or severe. For those children with minor disabilities, it is possible to admit them to special streams like Open Schools. “Fortunately, our 12-year-old daughter falls in the mild category. Her academic and social skills have improved slightly. It is said that about half the children have only a mild disability. Having witnessed the progress in my daughter’s case, I would request those like her to be admitted to normal schools,” says K Gopinath, a parent.
According to senior officials with the Welfare of the Differently-abled department, the State government had many initiatives for the welfare of the intellectually-disabled. The department is also initiating programmes specifically targeting such children in association with NGOs.
Those organisations who have land in possession are being given as much as `5 lakh to construct school buildings, besides paying the salaries of two teachers and a physiotherapist.
“There are adult homes for the mentally retarded, functioning in almost every district where they get all facilities, including medicines, treatment and so on. For running these facilities, these homes are allotted `10 lakh every year,” says an official.
Also, the National Institute for Empowerment of Persons with Multiple disabilities (NIPMED), Chennai, is supplying equipment for them free of free of cost, he points out.
“Government hospitals also have the capability to provide therapy to the children. But it seems not many parents are aware of these facilities that the government is extending to their children,” said the official.
Accommodating these children in schools depends on the condition of the child. “Mild category children are being taken into open schools. Parents only have to approach these institutions,” claim officials.
Many like Gopinath and Karpagam say that social acceptance is still a distant reality. It is imperative to create more awareness and provide them with better opportunities in life — the need of the hour, say activists.