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Mainstreaming disability into the child rights agenda

By Renu Addlakha

One in every 10 children is born with or acquires a disability. While the pulse polio drive and immunisation against diphtheria, pertusis and tetanus have been quite successful, the State's efforts to prevent conditions such as blindness, deafness and neurological disabilities have been dismal

One in every 10 children is born with or acquires a physical, mental or sensory disability (Government of India estimates). So India is probably home to millions of disabled children. More than 75% of disabilities are preventable. Although there has been some improvement in the status of children in the areas of health, nutrition and education in general, the situation of children with disabilities remains deplorable, particularly in rural areas and among the lower socio-economic strata. Also, gender-discriminatory feeding and healthcare practices within the home render the girl-child more vulnerable to ill health and acquired disabilities compared to her male counterparts.

The first six years in a child’s life are crucial. It is in these years that the physical, cognitive, language and social development of the child is at its peak. Investment in early childhood health and education is therefore essential.

Although various horizontal and vertical health programmes of the State, such as the National Health Policy, Integrated Child Development Services (ICDS) scheme and National Iodine Deficiency Control and Vitamin-A Supplementation Programmes do focus on prevention of childhood disability, their impact on overall decline in the incidence of disability remains minimal. For instance, more than 210,000 children are born cretins, or turn blind every year. High levels of childhood malnutrition and little over 50% immunisation coverage further increase the vulnerability of millions of children to death, disease and disability.

Disability continues to fall in the area of ‘social welfare’. While efforts are on to bring it into the ‘rights’ arena, there is still a long way to go. Various groups of children, including those physically and mentally challenged, juvenile offenders, destitute children and minor drug addicts, etc, are particularly disadvantaged because of their social, economic, physical or mental condition.

Such children are placed under the category of ‘children under special or difficult circumstances’ by the Indian State. Government policies, legislative action, schemes and provisions for the disabled give the impression of a State that is committed to human rights and equal opportunities. But the ground realities are quite different. While the pulse polio drive and immunisation against diphtheria, pertusis and tetanus have been quite successful, efforts aimed at the prevention of other conditions such as blindness, deafness and neurological disabilities have been dismal. The incidence of developmental disability such as mental retardation and autism has increased to an alarming level.

Children with disabilities must cope with all the physical changes, emotional anxieties and social conflicts of their non-disabled counterparts, in addition to those produced by their disability. Along with the physical and communication-related limitations that their disability places on their daily activities, they constantly face discrimination -– economic, educational, architectural, legal, health.

When poverty, physical neglect and social marginalisation intersect, the impact on the disabled girl-child can be devastating. Since women embody family honour, disabled girls are kept hidden away at home by families and denied the basic rights of mobility, education and employment. They are viewed as asexual and dependent.

The plight of a disabled girl is aptly summed up by Neera, a 19-year-old orthopaedically challenged girl living in a resettlement colony in Delhi with her family, who dropped out of school in the 10th standard. She said: “All disabled people face problems. When a disabled child is born into a family, the parents’ outlook changes. They blame themselves for this occurrence and want to know what they had done to deserve such a fate. As I grew older, so did my problems. Even before I was admitted to school, I was thrown out. I visited many organisations. These people promised things that they never delivered, which increased my frustration. Our neighbours’ behaviour became strange. I stopped going out of the house except to the hospital in the company of my father. I have never been out of the house alone. After being associated with ActionAid in our area, I realised that I was also entitled to a life of my own.”

There is an over-representation of disabled boys in education, both in special and mainstream schools. Due to differential gender-based role expectations, education is not considered a priority for disabled girls. Dropout rates for disabled girls are higher than for disabled boys. Parents become more protective and restrictive, especially after a disabled girl reaches puberty. Travelling to school is a huge problem, since, besides transport difficulties, the danger of sexual abuse and violation looms large. There is also the reasoning that there’s little point investing in a disabled girl’s education as she will anyhow never be able to earn. She will be a lifelong burden on the natal family because marriage is not a realistic option. So, it is economically unsound to invest in her education or vocational training.

Vinita, a visually challenged college-going student, highlighted the disadvantages faced by visually challenged girls due to the overprotective attitude of their families and school. She said: “Girls with disabilities definitely face more problems than men. Visually challenged girls like me are overprotected both at home and in school. Boys are allowed to move freely out of the school premises, but not girls. When I came to Delhi I could not travel by bus on my own. I also did not know how to ask people for information. Initially, I was very scared because we had never been allowed to leave the blind school alone, and at home someone would always accompany me whenever I went out.”

Sexual identity is a critical component of overall personality development and self-esteem, which crystallises during adolescence. Children with disabilities are at a particular disadvantage in this regard as well. There is a strong attitude of overprotection towards the disabled child. Parents infantilise disabled children and imply that sex is only for the able-bodied and of no relevance to the disabled. These parental attitudes are transmitted to the child in subtle ways making him/her feel that s/he is inferior and unworthy of love. Parents of children with disabilities encourage dependence and share in a general societal perception of disabled persons as essentially child-like, innocent and by extension asexual. To make matters worse, these attitudes also colour the perceptions of teachers.

Preeti, a hearing challenged girl, described her marginalisation in discussions around marriage, which she attributed to her disability. She said: “I work as a computer teacher in a vocational centre for deaf women. At home there is talk about my marriage but I cannot follow the conversation and no one really bothers to explain to me what is being talked about. I do not know what is happening at home because I cannot participate in the conversations. I only get to know when things have already happened. At family functions, no one wants to speak to me in spite of the fact that I can lip-read. At least my family should know sign language. Marriage is not important and I would rather help others.”

Key terms in disability discourse are dignity and respect, inclusion, participation, equalisation of opportunities and empowerment. However, if the underlying negative attitudes and cultural representations of disability in society are not challenged through vigorous awareness-generation and attitudinal change strategies, such words will remain empty slogans. Throughout the ages the disabled have been looked upon with disdain, almost as if they were sub-human. Even in literature, negative characters were attributed some form of deformity, be it Manthara, the hunchback, in the Ramayana, or Shakuni the lame, in the Mahabharata. Whether in folk tales or contemporary comic strips, the heroine is invariably fair, slim and beautiful, and the hero, tall, smart and handsome. Rarely is a person with an impairment conferred a positive or heroic role. Most people continue to believe that disability is either an irremediable medical condition or an act of fate. In both cases the onus of care devolves upon the family of the disabled and not on the community.

Myths and misconceptions about disability abound, causing the disabled to be ostracised, isolated and marginalised. From a very young age, children with disabilities internalise such perceptions undermining their innate potentialities and self-esteem. 

Disability and the disabled have to be integrated into everyday life. Segregation in special schools and institutions must be minimised; the issue of disability must consciously move beyond issues of special education and medical rehabilitation and be mainstreamed into other discourses such as the economy, polity, entertainment, sports, fashion and lifestyle. The language of special needs and vulnerable groups has to be replaced with less stigmatising and more empowering terms like human rights and specific needs. Families have to be helped to overcome feelings of shame at having a disabled child. And, most important of all, children with disabilities have to be helped to acquire a positive sense of self, self-confidence and self-respect. Only when these are achieved will there be total inclusion and empowerment, and having a disability will mean as much or as little as having black hair or brown eyes.

(Renu Addlakha is Senior Fellow, Centre for Women’s Development Studies, New Delhi)

InfoChange News & Features, June 2007