In February/March, 2002, I (David Werner) was invited to India as a consultant to a comprehensive program to reduce poverty throughout the rural area of Andhra Pradesh.

Aware that many large-scale, top-down programs to combat poverty have failed to reach the most destitute and marginalized persons—and consequently have marginalized them more—the designers of the Andhra Pradesh Rural Poverty Reduction Program are taking a different approach. The focus will be on the most needy and vulnerable groups in rural areas (where 2/3 of the state’s 76 million population live).

These “most vulnerable” groups include:

• the “poorest of the poor,” including the jobless and homeless

• those belonging to the lowest “untouchable” caste (Dalits)

• tribal and nomadic populations

• women (especially widows and single mothers)

• children (especially girls)

• the indigent elderly and infirm

• disabled persons.

 

Following the principles of participation and empowerment, the plan is for representatives from all of these most vulnerable groups to play a leading role in the development and implementation of the poverty reduction strategy. This may sound like common sense. But in a land where class, caste, and gender hierarchies are so deeply entrenched, achieving effective leadership and a more equal voice for those who have been on the bottom of the pecking order for millennia will be a complex challenge.

The Andhra Pradesh Rural Poverty Reduction Program (APRPRP) is under ordinance of the state government (whose capital is Hyderabad, in east-central India) and financed in large part by the World Bank. However, local non-government organizations (NGOs) are playing a leading role in both the program design and field work.

The disability component of the APRPRP is being facilitated by “Commitments,” a branch of a very capable Indian NGO called the Society for Elimination of Poverty (SERC). Although the Bank would have preferred a more mainstream advisor, Commitments insisted that I (David Werner) be the “independent consultant” to the disability component of the APRPRP. One reason they wanted me was that the self-help books, Disabled Village Children and Nothing About Us Without Us are so widely used in community programs in India.

While in India, I met with several groups that have translated or are translating these books into Telugu, the area’s traditional language. (One result of my visit was to engender more cooperation between the diverse programs working in this field.) Also I found that the Telugu version of Where There Is No Doctor is widely used. And what pleases me more, facilitators of both community based health and rehabilitation training programs are using Helping Health Workers Learn to make their teaching methods more discovery-based and learner-centered.

In-Depth Analytic Survey of Disability Needs in Rural Andhra Pradesh

The Disability Component of the Andhra Pradesh Rural Poverty Reduction Program has many features of Community Based Rehabilitation (CBR). However it also has an essential quality of the Independent Living Movement, in that it tries to open the way for leadership by disabled persons themselves.

Disabled persons played a leading role, even in the planning stage of the program, by conducting the initial survey for an “In-depth Analysis of the Disability Issues” in the state. To oversee the survey, SERC chose the Regional Office of “Action Aid,” an NGO based in the state capital, Hyderabad. Action Aid has a long history of working for the rights and opportunities of marginalized groups, especially disabled persons.

To plan the survey, Action Aid met with disabled activists in Hyderabad, as well as from the rural area. Together they designed a creative, culturally appropriate strategy for conducting the in depth survey. The result was a remarkably sensitive, participatory process with some unique features.

Avoiding the Typical Problems with Surveys

Surveys in which outsiders question people in poor communities have in recent years drawn a lot of criticism. Because they distrust the interviewers or feel humiliated by their questions, too often those interviewed give false or misleading information. Or they tell the interviewers what they think they want to know. When interviewers are pushy, condescending, or insensitive to the sociocultural dynamics of the community, data is even more likely to be invalid.

The communications problems common to surveys were minimized in the Andhra Pradesh disability survey in 3 ways:

1. The information gatherers were them selves disabled, giving them insight and making them peers of those primarily being interviewed.

2. The information gatherers were specially trained in cross-cultural sensitivity, methods of empowerment, and community mobilization.. (One of the facilitators was none other than my old friend, B. Venkatesh, a blind disability-rights activist who visited PROJIMO many years ago);

3. The survey was combined with a dynamicprocess of group building, community awareness raising and collective action.

Recruitment of Interviewers. To recruit the information gatherers, Action Aid carefully screened scores of young, literate, disabled persons, from which they picked a group of 80. In the selection, insight, attitudes, and a humble background were given more weight than academic qualifications. On purpose, the group included persons with a wide range of disabilities. It also included representatives from more vulnerable groups, especially persons of rural origins,women, those from lower castes, including Dalits (untouchables), and persons from religious minorities (Muslims, Christians).

Coverage of the Survey: The study covered 52 villages from 20 mandals (groups of villages) in 15 districts. Locations were selected based on those with the biggest problems and needs. These included:

• interior rural areas (those with the poorest,most deprived and underserved populations)

• homelands of “primitive” tribal groups or"schedule caste” populations (Untouchables, Dalits)

• the driest (unirrigated) least fertile lands

• areas with shortage of drinking water, especially those with high fluoride content (a cause of a widespread disability: fluorosis)

• areas with high unemployment or a large population of peasants who are landless or have very small holdings

• areas with very low literacy rates.

In the survey, all of these factors (and many others) were evaluated in terms of their impact on incidence of disability and influence on disabled persons’ well-being . To survey a village (usually with 1000 to 2000 residents), a team of information gatherers would stay in the village for 5 days, living in the homes of persons with different disabilities. Whenever possible, the team leader would stay in the home of the most severely disabled or marginalized person or family in the village (paying the costs). They would do their best to become a friend of the disabled person, the family, and neighbors, trying to gain insight into their spectrum of problems, while helping to resolve or look for ways of resolving the ones they could.

 

Humanitarian approach: The study—which was designed around “a rights-based approach to Community Based Rehabilitation (CBR)"—proactively addressed the following areas:

• Rescue planning and protection for the destitute among the disabled persons

• Protection of the rights of “the disabled”

• Education

• Medical integration—care, aids and appliances

• Social reintegration

• Work and income generating opportunities.

But the information gatherers did far more than collect data. They brought disabled people together to discuss their mutual problems and needs. They helped groups of disabled persons begin to form self-help groups, or “sangams.” They conducted awareness raising activities, including public theater, in the villages surveyed. And before leaving the village they organized a kind of “disability pride” march of disabled people and their families.

 

A complaint about many surveys in and of disadvantaged communities is that they build up people’s expectations, but the promised benefits never arrive. People feel used, deceived, and stop cooperating.

To avoid this, in Andhra Pradesh, the survey included a service component. It brought disabled people and their families together to discuss their needs, learn their legal entitlements, and begin to take organized action. At the same time, it launched a constructive dialogue with the larger community and with village authorities to help open the way for more equal opportunities and more accountability. It also helped the disabled persons gain free access to medical and orthopedic facilities.

Good role models. In many ways, the employment and leadership of disabled persons as key actors in this Andhra Pradesh analytic survey was a groundbreaking approach. The fact that the facilitators were themselves disabled provided excellent role models for the disabled villagers and their families. The methodology deserves dissemination. Fortunately, it is well documented, and much of the community process was video-taped. An important resource.

 

Meeting with the Information Gatherers

Before the disabled “information gatherers” began to visit the villages, they went through an intensive, highly participatory learning process using methods of group dynamics, confidence building, peer counseling, and “strategies of empowerment.” The sessions involved role plays in which everyone practiced listening to and learn from one another as equals. These methods—drawing on the “pedagogy of liberation” of Paulo Freire—were designed to help them reach out to multiple disadvantaged persons, build their self-esteem, and win their trust, so that those interviewed could gain the self-confidence and trust to speak openly of their true feelings, needs, obstacles, fears, and hopes.

In my meeting with the information gatherers at Action Aid, we started by introducing ourselves and describing the difficulties and challenges we had experienced as disabled persons, from early childhood on, as well as the circumstances and events that had changed our lives for the better. Many of the group had grown up in extreme poverty. Nevertheless, I realized that this group was exceptional, in that all of them had somehow succeeded in finding decent work, gaining self-esteem, and playing a dignified, productive role in society.

 

The information gatherers described the pervasive social and economic obstacles they had struggled to overcome. For example, one village girl, who belonged to the Dalit (untouchable) caste, described herself as being “triple disadvantaged.” She was: 1) disabled (one leg paralyzed by polio), 2) female, and 3) a Dalit, i.e. born into the “lowest,” most denigrated social caste. Added to all this, she had grown up in a situation of rural poverty. Tellingly, she said that the hardship and social stigma she had suffered for being Dalit was greater than that of being disabled. This comment made clear the importance of looking at disability within the entire sociocultural and economic context.

As I listened to the different members of the study team describe their personal backgrounds and difficulties, I was impressed by how far they had come in terms of coping skills and personal esteem. It was apparent that their being involved in the DPIG survey/analysis—designed to give a voice to rural poor disabled persons—has been an eye-opening and empowering process not only for the disabled persons interviewed, but also for these information gatherers themselves. A true win-win situation.

Most of the disabled information gatherers had not known each other before they were recruited. But in less than a year they had developed a strong sense of camaraderie and solidarity. More than most disabled persons (where the pecking order between different disabilities can be as unkind as that in society as a whole), they reached out to include one another as equals. For example, those who had learned sign language (to interview deaf persons) enthusiastically translated our full discussion into sign, for the 2 participants who were deaf.