Current Edition : April, 2004

Food for Thought:

Unheard Voices

Destiny, Fate, God, past sins…Call it whatever you will…It is not justified…It would have been better if I'd been allowed to die one day instead of dying everyday. (Lakshmi)

This is the voice of an 11-year-old disabled girl living in an urban slum in Delhi, the capital of India. Such voices are more the rule than the exception. Pre-occupations with impairment has pathologised childhood disability within an individual tragedy model. The construction of disabled children as 'vulnerable' and passive has de-sensitised us from their agency as social actors. In addition, the pre-occupation with services has subjectified disabled children within a discourse of segregation and discipline. Above all, disabled children continue to be constructed within a unitary identity that is largely de-gendered, asexual, culturally unspecific and classless. However, the outlook is by no means bleak and agendas are shifting rapidly. Advances in childhood research, combined with developments arising from the disabled peoples' movement, suggest that disabled children may increasingly find new spaces in which to reclaim their identities and their childhoods. In order to facilitate this process, activists already engaged with new perspectives on disability, also need to engage with new perspectives on childhood. Above all, we will all need to engage more directly with disabled children themselves. Disabled children we talk to, do want to have their voices heard. They do not feel disqualified from participation because of their impairment or because of their age.

As one child put it, "If you've got something ' to say, you've got something ' to say, it does not matter how young you are." Whilst the guidance and legislation (post the UN Convention on the Rights of the Child) stresses the importance of taking the child's views into account, it also contains caveats that can be used to limit a child's ability to have his or her voice heard and taken account of during a variety of proceedings and in different settings Yet while legislation and policy should be changed to facilitate the inclusion of disabled children, and to allow their voice to be heard, we do not believe that law or litigation is the main answer. We would argue for a multi-layered approach to disabled children's rights, which as well as a strengthening of present guidance and legislation would require local authorities to invest in a number of training programmes for all stakeholders. Disabled children, whatever their impairment, can be competent participants in every day decision making processes when they are provided with opportunities to interact with other children on an equitable basis, their participation is properly planned and not reliant on short term adult assessments of competency, and when they are able to work with adults who do not discount their experiential terrain.

Globalisation has constructed a world that offers open-ended possibilities and new life patterns, like access to information and technology. However, the paradox is that its emphasis on power and profit has systematically dislodged vulnerable groups from access to even basic resources such as food and livelihood. Consequently this transformation of society has a very different meaning for people who have been oppressed because of their gender, class, race, religion, caste, displacement and disability status. As disability cuts across all categories, it has been suggested that it is a global issue, thus implying that its meaning and nuances are universal. However, this ignores an important issue namely, of disparity within the category of disabled. For instance, those who have access to the Internet and a hand driven car, can be considered a privileged disabled person, others on the other hand in a country such as India have to fight not only for their very survival but also to have the fact that they even exist, recognised.

Thus the notion of commonality raises significant questions in a country like India. In the fight for rights, whose ideology and whose agenda are more important? Who will determine the dominant cultural ethos? What kind of social systems will be sanctioned? Answers to such questions in the third world are extremely complicated, considering the diversities of the various populations. An understanding of disability has therefore to be located within specific contexts. The comprehension and meaning of disability in India needs to be negotiated as embedded in multiple cultural discourses, with subtle nuances. On the one hand is the assumption that disability implies a 'lack' or 'flaw', leading to significantly diminished capability. This assumption is rooted in the dominant Hindu mythology where, in the various epics, disability is associated with a lot of negativity. While there are different strands in the historical rendering of the myths the associations that are conveyed construct the disabled as an objects of pity and charity coupled with images of deviance, treachery, evil behavior and villainy. Another set of images portrays the disabled as capable of heroic efforts that result in overcoming the disability, setting an exemplary standard for others to follow. Needless to add, the objective of all these images is to posit disability as an oppositional category of normality and in doing so to be considered.

Want to be Seen

Within this milieu, disabled children are consistently determined to see themselves, and be seen, as normal, as more like other children than unlike them. While disabled children are thought of as different they are not that different and we would want to avoid the danger of setting them up as a category and homogenizing them. We would also stress that whatever the impairment - they can be agents and that they can resist (thus breaking the myth of passivity). However, this is easier said than done, as children face barriers in every aspect of life. Disabled children have been constructed as different both through physical and structural barriers and through adult discourses.

First, the organization of social spaces around them often made it difficult for them to fully occupy the world of children. Many have to spend large amounts of time in the company of adults, both in school and at home often singled and causing them to be excluded from the "normal" social world. Although they spend time in adult places they are usually positioned within them as non-adults, subject to complex practices of surveillance and control. Many children are segregated from non-disabled children of their own age, either because they go to a special school, or because they are isolated within a special unit in a mainstream school, or because various rules and regulations existed to protect them. Yet these structures create barriers to their participation and inclusion in the normal world.

For example, children have often been segregated because of a fear of bullying in mainstream schools. Yet the goal of protection was undermined because there was bullying within the segregated schools that not only goes unabated but comes in different forms and from different quarters( See testimony from Australia below). Moreover, children who went to different schools may be isolated or bullied in their home neighborhood as a result. Physical access has also been a problem for many children compounded by family economic ,social and cultural conditions and advantages . The differences and disparities are endless.

In India, where the middle class situation is abysmal in itself consider the plight of the disabled children in slums who have no services available to them, who do not get to school as they have no certificates that come in time and no schools which are very eager to take them. Even if they were to be given amenities the infrastructure and social attitude disallows its use, such as wheelchairs.

We need to recognize that it is not just the environment that "stop" access to a life, but cultural and attitudinal barriers which undermine the acceptance and participation of children in schools and other settings besides the normalcy of life itself. We as adults compound the situation when in our self-imagery we deny competence not only to our children or those around us , but particularly to disabled children . Very rarely are children are perceived as active social agents capable of making choices. As one care worker told us: "They find it very difficult to make up their own minds. We have to tell them what they want to do, help them decide." Very often children were denied agency not because they were incapable of making choices, but simply because their ability to make choices went unrecognised. Our argument is that disabled children are seen as in competent because they are seen as different. This difference arises because the children are judged against supposedly objective criteria and also because they carry more than one vulnerability marker.

The testimonies given in the rest of the Journal were recent, in the 2004 and are sufficient evidence of what we have just said…….it is only the tip of the iceberg. But then it is at least a start... ...