Enabling the Disabled

Disabled people are an important and sizable part of India's population - close to 70 million citizens. This community can contribute hugely to the nation's development given the right opportunities. The need is for the disabled community to speak in one voice to those who formulate policy. To this end, the National Centre for Promotion of Employment for Disabled People (NCPEDP) has just launched a Disability Awareness Unit (DAU) with support from the European Community and the Danish Council of Organisations of Disabled People (DSI). Karen Reiff , Advisor, DSI, speaks to Madhusudan Srinivas about the unit, its objectives and related issues:

Where did the idea for a Disability Awareness Unit come from?

When we came here in 2001, we met various stakeholders - disabled people, government representatives and organisations which provide services in the disability sector... In the course of our interactions with these stakeholders, we found that awareness about disability was rather low across all sectors, particularly about disability as a human rights issue.

What was really needed was a mechanism to coordinate the activities of all those working in the disability sector. This involved creating a space where disability could be seen both as a human rights and a development issue. India lacks a shared space or platform where people with disabilities can speak in a common voice. We thought that a common resource centre for people with disabilities could be one way of addressing this.

To compile and disseminate information to everyone involved in this sector, including the media, and the parents and guardians of disabled people. That last category needs a separate mention, because we found that more often than not, parents and guardians didn't have access to the right information at the right time: What it means to have a disabled child, or to care for a disabled adult.

Hence, the idea of DAU with three core components - a disability news and information service, which will be web-based and function like any other media news agency; a website and resource centre which will be a storehouse of information and which will bring out a report on disability every year.

We also found that it's part of Indian culture that disability is viewed as a matter for charity rather than as a human rights issue. In the course of our discussions, we found that this is both a strength and a weakness - strength because it's part of Indian culture to take care of the family, but also weakness because it means you don't have a system in place which can take over the care of a child with disability. At the same time, a strong charity system has created a dependency syndrome among people with disability.

How does this project propose to tackle the issue?

The idea behind DAU was to empower people with disabilities by making them aware of their own rights. In a functioning democracy like India, this means that disabled people have to acquire a voice in the polity and thereby in decision-making. Ballpark figures suggest that at least 40 per cent of the electorate is connected in some way to the disability sector. They can help educate public opinion and put pressure on the government. It boils down to incorporating the special needs of disabled people while planning, say, a water and sanitation project for a village.

Special needs cut across all sectors - health, education, transport, you name it. That's the message that the disability movement needs to get across: That it's not simply a health issue, but cuts across all departments and ministries. People with disabilities, or those who care for them, also need to emphasise this all around. You need to be able to go to a local authority and say that you have a child with disability who needs to go to school, needs transport of a particular kind, and specialised teachers who can take care of his or her special needs.

The disability movement in India is in its infancy. It is just emerging out of the charity tradition.

Where do you hope it will lead?

The aim is to eventually unify all disability organisations in the country into setting out a common agenda for the politicians and government. An agenda that embraces the needs of haemophiliacs as much as the visually impaired and those suffering from autism. In other words, disability no longer remains an NCPEDP project but encompasses all disability organisations.

How realistic is the expectation that disability organisations will speak in one voice in India?

Well, there's a desperate need for the disabled to have an umbrella organisation, which speaks for everybody. And speaks in one voice. Within my limited experience - I've only been here twice for a few months each time - I'm not sure whether India is prepared for such a situation. You have so many little kingdoms with their little emperors. Everyone wants to be king. And yes you can print this, it will be part of our next report.

Source: The Times Of India, Bangalore,
Dated: July 18, 2003.