Working with people with disability in India is a tough job. To being with, data, the foundation stone for understanding patterns and trends just do not exist- existing data generated by official data sources like census of India or the National Sample Survey are inconsistent in their definitions of disability and therefore the numbers they generate also vary.
What is however, more disturbing is that the disability discourses often fail to engage with people with disabilities themselves. This crucial aspect of providing these people opportunities to express themselves seems to have been continually excluded. What we have, therefore, is often the opinions of the ‘significant others’ or the most vocal that substitutes or ‘represents’ the views of the people with disability. People with disabilities are further silenced as it is assumed that in addition to whatever disability they have they would also be unable to express themselves. In case of those with hearing and speech impairment, the problems are exacerbated (though one could possibly argue that it is the inability of researchers rather than the respondent to use alternative modes of communication). However, in contexts where people with disabilities are routinely marginalized and excluded, such debates never arise.
There are also some logistical issues, among poor households in India, for example, private’ space for working with people with disability has both physical and socio-cultural issues. Often physical space is just not there and people with or without disability have no space they could call as their own- all space was ‘collective’ . Given this, any attempt to work is surely to be infringed by so many ‘others’ –family members, neighbours, local vendors. These are inescapable and are bets treated as a bonues- it reflects the familial and communal context of individual lives.
However, the need for developmental work that captures the voices of the people can hardly be overemphasized. It is crucial to effectively access and bring to fore the narratives of young people with disabilities- their perspectives and experiences. And these need to go beyond anecdotes- these need to be captured following true methodological protocols to ensure that there they meet the academic rigors that upholds the trustworthiness of these accounts while retaining all its richness and details.
This can only happen if there is more emphasis on qualitative studies. Unfortunately, the field of disability research in countries in India has been largely dominated by quantitative work with very little space for the voice of the people with disabilities. However, as is true for all kinds of public policy, interventions that impact lives of the people with disabilities should be informed by their narratives of experiences. Only then are they reflective of the needs of the people they are designed for and only then are they empowering.
What can be done to capture the voice of people with disability in policy and interventions that impact them?