PROJIMO Community BasedRehabilitation Program

run by and for disabled villagers in western Mexico (Coyotitan)

PROJIMO Skills Training and Work Program

run by disabled youth inrural Mexico (Duranguito)

Newsletter from the Sierra Madre #48December, 2002

Enabling the “poorest of the poor”

In February/March, 2002, I (David Werner)was invited to India as a consultant to a com-prehensive program to reduce povertythroughout the rural area of Andhra Pradesh.

Aware that many large-scale, top-down programs to combat povertyhave failed to reach the most desti-tute and marginalized persons--andconsequently have marginalizedthem more--the designers of theAndhra Pradesh Rural PovertyReduction Program are taking adifferent approach. The focus willbe on the most needy and vulnera-ble groups in rural areas (where 2/3of the state's 76 million populationlive).

These "most vulnerable" groupsinclude:

* 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 participationand empowerment, the plan is for represen-tatives from all of these most vulnerablegroups to play a leading role in the develop-ment and implementation of the povertyreduction strategy. This may sound like

common sense. But in a land where class,caste, and gender hierarchies are so deeplyentrenched, achieving effective leadershipand a more equal voice for those who havebeen on the bottom of the pecking order formillennia will be a complex challenge.

The Andhra Pradesh Rural PovertyReduction Program (APRPRP) is under ordi-nance of the state government (whose capi-

tal is Hyderabad, in east-central India) andfinanced in large part by the World Bank.However, local non-government organiza-tions (NGOs) are playing a leading role inboth the program design and field work.

The disability component of the APRPRPis being facilitated by "Commitments," abranch of a very capable Indian NGOcalled the Society for Elimination ofPoverty (SERC). Although the Bankwould have preferred a more mainstreamadvisor, Commitments insisted that I(David Werner) be the "independent con-sultant" to the disability component of theAPRPRP. One reason they wanted mewas that the self-help books, DisabledVillage Children and Nothing About UsWithout Us are so widely used in commu-nity programs in India.

While in India, I met with several groupsthat have translated or are translatingthese books into Telegu, the area’s tradi-

tional language. (One result of my visit wasto engender more cooperation between thediverse programs working in this field.) AlsoI found that the Telegu version of WhereThere Is No Doctor is widely used. And whatpleases me more, facilitators of both commu-nity based health and rehabilitation trainingprograms are using Helping Health WorkersLearn to make their teaching methods morediscovery-based and learner-centered.

The Role of Disabled Persons in OvercomingRural Poverty in Andhra Pradesh, India

This issue takes us to the state of Andhra Pradesh, India, where early this year David Werner went as a consultant for a statewideRural Poverty Reduction Program. Although the consultancy concerned the needs of disabled persons, it turned out that the lackof adequate health care at the village level was a substantial contributing cause of poverty. The possibility arose for self-helpgroups of disabled villagers to play a central role in meeting the health needs of the whole community.

Also, as an insert within this Newsletter, we provide an update on our new Politics of Health Knowledge Network, a joint projectof HealthWrights and the International People’s Health Council. See: www.politicsofhealth.org

Most of the staff and “social activists” of the disability component ofthe APRPRP, piloted by Commitments, are themselves disabled.

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HealthWrightsBoard of Directors

Trude BockRoberto FajardoEmily Goldfarb

Barry GoldensohnBruce HobsonDonald Laub

Eve MaloMyra Polinger

Leopoldo RibotaDavid WernerJason WestonEfraín Zamora

International AdvisoryBoard

Allison Akana – United StatesDwight Clark – Volunteers in Asia

David Sanders – South AfricaMira Shiva – India

Michael Tan – Philippines Pam Zinkin – England

María Zúniga– Nicaragua

CCOONNTTEENNTTSS PPaaggee

THE ROLE OF DISABLED PEOPLE IN REDUCINGPOVERTY IN RURAL ANDHRA PRADESH, INDIA ........1

IN-DEPTH SURVEY AND ANALYSIS OF DISABILITY NEEDS................................................ 2

SANGAMS (SELF-HELP GROUPS) AS AS AN ENTRY POINT TO POVERTY REDUCTION ......... 4

NEIGHBORHOOD HOUSES ...................................... 5

EXPLORING ALTERNATIVES TO SCHOOL.............. 5

INTEGRATING DISABLED KIDS: CHIILD-TO-CHILD.7

WANTED: VILLAGE HEALTH CARE ......................... 7

POSSIBLE SOLUTION: DISABLED PERSONSAS HEALTH WORKERS ....................................... 7

GOOD HEALTH CARE REDUCES POVERTY ........... 7

This issue of NNeewwsslleetttteerr ffrroomm tthhee SSiieerrrraa MMaaddrree was created by:

David Werner - Writing and photos Shefali Gupta - Technical assistanceTrude Bock - Proofreading

Tel: (650) 325-7500 Fax: (650) 325-1080 email: healthwrights@igc.org

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With the help of the Mana Center’s CommunityBased Rehabilitation program to families in theslums of Hyderabad, this father learns to assist inthe development of his multiply disabled son.

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We lost part of our current mailing list due to a computer glitch, and are trying to rebuild it. If there is any error in sending out this newsletter, or discrepency in number of issues due, please let usknow. Thanks!

WANTED: Village health care

In the villages the lack of adequate healthservices is a huge problem, especially for dis-abled people and the "poorest of the poor."In theory, Primary Health Care in India is auniversal human right. In practice, hundredsof millions of people face enormous obsta-cles to getting the health care they need.

In India government health services exist onseveral levels. At the village level are the"anganwadis" or village health workers,mostly village girls with a couple of weekstraining. Their skills and responsibilities areso limited that they have little credibilityamong the villagers. They weigh babies, fillout forms, and help rally people for immu-nization. However, they are taught almost nocurative skills. They know less about usefulmedicines (most of which they are forbiddento use) than do local shop keepers or the tra-ditional healers. They refer the sick orinjured to the closest District Health Center.

But District Health Centers (the second levelof service) are few and far between. Timeand cost to get there, and the series of bribesor "tips" required to get service, are such thatthe poor often go untreated. Or worse, theyuse up their limited food money on transport,bribes, and (recently introduced) "user fees"(or, alternatively, on local private doctors.)As a result, their hungry children becomeeven less resistant to the "diseases of pover-ty." Thus "health care" becomes anothercause of ill health, disability, and death.Health department officials concede that theservices of district health centers are ofteninaccessible to the most disadvantaged.

At the third level are public hospitals andsurgical centers in larger towns and cities.Indigent and disabled persons are legallyentitled to free care, along with "entitle-ments" such as bus and train passes. Butagain, the combination of bureaucracy andcorruption (bribes) deprives the neediest peo-ple. Underlying these problems is the factthat the government budgets only a smallfraction of what is needed to provide the ser-vices and entitlements guaranteed by law.

Enormous unmet need.

All this means that in rural Andhra Pradeshthere is an enormous need for low-cost, com-petent, health services provided by, caringhealth workers at the village level.

A possible solution:Disabled persons as health workers, backed by their sangams.

In our discussions with villagers, SERC, andthe APRPRP planners, an exciting possibili-ty arose. Why not train selected members ofthe disability sangams as village healthworkers (VHWs)? A comprehensive, partici-patory approach to Primary Health Carecould be revived at the village level. Youngdisabled women (and men?) from thesangams could be trained as an upgraded ver-sion of anganwadis. Their sangam couldform a back-up team for health promotion.The new anganwadis (or VHWs) couldembrace preventive, curative, rehabilitative,and promotive curative aspects of PHC in amanner that could more fully protect healthof the poorest, most vulnerable people.Backed by their sangams, they could involveother (non-disabled) sangams, school chil-dren (through Child-to-Child activities) andother villagers, in health promoting action.Together they could address issues such aswater supply, sanitation, malaria control,tree-planting, sustainable agriculture.

This way, disabled persons would play a cen-tral role in the community’s well being.People would look at their strengths, not theirweaknesses, and include them more fully.

This approach could also help bring aboutcloser links between Primary Health Careand Community Based Rehabilitation. The"Neighborhood Houses," might evolve intoCommunity Based Rehabilitation and HealthPromotion Centers" -- as part of an empow-ering village-based development paradigm.

Good health care reduces poverty

Studies in India show that on the averagepoor families spend 19% of their familyincome on health care-related expenses.Costs related to catastrophic illness are oneof the main events that push families thathave managed to cope into absolute poverty.

Empowering communities to better meettheir health needs at low cost can be animportant step toward reducing poverty. Inthe long run it can save more money than itcosts (for people and government alike).

Potential for “scaling up”

Within the self-help disability sangams inMahabubnagar, the interest and potentialexist to improve health and rehabilitation ser-vices at the village level. Such an empower-ing approach could help meet an urgent needof the most vulnerable people. It would alsoincrease respect and opportunities for dis-abled persons. And reduce poverty.

This community-based approach could beintroduced, on trial basis, as part of theAndhra Pradesh Rural Poverty ReductionProgram. The APRPRP, as a state-wide pro-gram, has the necessary links to governmentand to the health, education, and other rele-vant ministries. If successful, the approachcan be incrementally scaled up to include all500 mandals under the coverage of theAPRPRP. And from there, who knows?

Conclusion

Clearly, to substantially reduce poverty inIndia - or anywhere else - will require trans-formation of unjust socioeconomic and polit-ical structures that go far beyond village-based health and rehabilitation measures. But in the meantime, such measures can helpthe most vulnerable villagers cope a bit moresuccessfully. By coming together to solvetheir problems, perhaps in time a criticalmass of "people who care for one another asequals" will be reached so that, collectively,they can begin to demand and work for morefar-reaching change.

7

Exciting work with disabled children is also takingplace in the slums of Hyderabad, where local girlshave become innovative CBR facilitators.

2

In-depth analytic survey of disabilityneeds in rural Ardhra Pradesh

The Disability Component of the AndhraPradesh Rural Poverty Reduction Programhas many features of Community BasedRehabilitation (CBR). However it also has anessential quality of the Independent LivingMovement, in that it tries to open the way forleadership by disabled persons themselves.

Disabled persons played a leading role, evenin the planning stage of the program, byconducting the initial survey for an "In-depthAnalysis of the Disability Issues” in the state.To oversee the survey, SERC chose theRegional Office of "Action Aid," an NGObased in the state capital, Hyderabad. ActionAid has a long history of working for therights and opportunities of marginalizedgroups, especially disabled persons.

To plan the survey, Action Aid met with dis-abled activists in Hyderabad, as well as fromthe rural area. Together they designed a cre-ative, culturally appropriate strategy for con-ducting the in-depth survey. The result was aremarkably sensitive, participatory processwith some unique features.

Avoiding the typical problems with surveys.Surveys in which outsiders question peoplein poor communities have in recent yearsdrawn a lot of criticism. Because they dis-trust the interviewers or feel humiliated bytheir questions, too often those interviewedgive false or misleading information. Or theytell the interviewers what they think theywant to know. When interviewers are pushy,condescending, or insensitive to the socio-cultural dynamics of the community, data iseven more likely to be invalid.The communications problems common tosurveys were minimized in the AndhraPradesh disability survey in 3 ways:

1. The information gatherers were them-selves disabled, giving them insight andmaking them peers of those primarily beinginterviewed.2. The information gatherers were speciallytrained in cross-cultural sensitivity, methodsof empowerment, and community mobiliza-tion.. (One of the facilitators was none otherthan my old friend, B. Venkatesh, a blind dis-ability-rights activist who visited PROJIMOmany years ago); 3) The survey was combined with a dynamicprocess of group building, communityawareness raising and collective action.

Recruitment of Interviewers. To recruit theinformation gatherers, Action Aid carefullyscreened scores of young, literate, disabledpersons, from which they picked a group of80. In the selection, insight, attitudes, and ahumble background weregiven more weight than acad-emic qualifications. On pur-pose, the group included per-sons with a wide range of dis-abilities. It also included rep-resentatives from more vul-nerable groups, especiallypersons of rural origins,women, those from lowercastes, including Dalits(untouchables), and personsfrom religious minorities(Muslims, Christians).

Coverage of the Survey: Thestudy covered 52 villagesfrom 20 mandals (groups ofvillages) in 15 districts.Locations were selectedbased on those with thebiggest 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, espe-cially those with high fluoride content (acause of a widespread disability: fluorosis)* areas with high unemployment or a largepopulation of peasants who are landless orhave very small holdings* areas with very low literacy rates.

In the survey, all of these factors (and manyothers) were evaluated in terms of theirimpact on incidence of disability and influ-ence on disabled persons’ well-being . To survey a village (usually with 1000 to2000 residents), a team of information gath-erers would stay in the village for 5 days, liv-ing in the homes of persons with differentdisabilities. Whenever possible, the teamleader would stay in the home of the mostseverely disabled or marginalized person orfamily in the village (paying the costs). They

would do their best to become a friend of thedisabled person, the family, and neighbors,trying to gain insight into their spectrum ofproblems, while helping to resolve or lookfor ways of resolving the ones they could.

Humanitarian approach: The study--which was designed around "a rights-basedapproach to Community Based Rehabili-tation (CBR)" -- proactively addressed thefollowing areas:

* Rescue planning and protection for the des-titute among the disabled persons* Protection of the rights of "the disabled"* Education* Medical integration - care, aids and appli-ances* Social reintegration * Work and income generating opportunities.

But the information gatherers did far morethan collect data. They brought disabled peo-ple together to discuss their mutual problemsand needs. They helped groups of disabled persons begin to form self-helpgroups, or "sangams." They conductedawareness raising activities, including publictheater, in the villages surveyed. And beforeleaving the village they organized a kind of"disability pride" march of disabled peopleand their families.

We visited self-help groups in villages in Mahabubnagar District of Andhra Pradesh, where ox carts are still the main form of transportation.

We concluded that there is need for flexibilityand common sense, both in questions of school-ing, and of "child labor." To simply say,"Schooling is good," and "Child labor is bad" issimplistic. We should ask ourselves, "Wheredoes the the child seem happiest, learn most, andbest develop his or her potential?'

Whether, under the circumstances, the parentsin Hakeempet should try to get their mentallyretarded children into the school, remainedunclear. What was very clear was that thesechildren needed an opportunity to play andinteract and learn with other children.

We told the group about the rustic“Playground for All Children” at PROJIMOin rural Mexico, and about the play and rehabequipment that the disabled children hadmade at the sangam in Gundmal. Pulling outa copy of Nothing About Us Without Us, Ishowed the sangam members drawings ofeasy-to-make playground equipment. Thegrown-ups showed polite interest. But thechildren were fascinated with the idea, andwith the book. Two young boys poured overit for half an hour. One was Ram - the angryretarded boy -- who suddenly came to life. When the Sangam leader asked Ram if he

would like to help build such a playgroundwith other children, he scowled silently for amoment. Then with a big grin he nodded,Yes!

Integrating Disabled Kids through "Child-to-Child"

One of the biggest benefits of schoolingpotentially, is that it gets children in a com-munity working and playing together, ascompanions and even as equals. But this

potential is not always met -- and it is herethat "Child-to-Child" can make a difference.Whether in school or out of school, it canhelp a group of children reach out, include,and assist "the child who is different."

The Child-to-Child methodology started inthe International Year of the Child (1979)and is now practiced in over 70 countries. Itbegan with the idea of teaching school-agedchildren to help meet the health and develop-ment needs of their baby brothers and sisters.(For example, the importance of giving lotsof fluid to an infant with diarrhea.) ButChild-to-Child has evolved. Now it includesactivities and games to sensitize children torelate in a friendly and enabling ways to chil-dren with special needs. (Our books DisabledVillage Children and Nothing About UsWithout Us both have sections on Child-to-Child disability-related activities. Bothbooks are available in full on our web site(www.healthwrights.org)

In Gundmal, Hakeempet, and other sangams,whenever we discussed Child-to-Child, therewas a lot of interest, especially among thechildren. I am happy to report thatCommitments has followed up on this inter-

est. In recent months, B.Venkatesh, who has a lot of expe-rience with Child-to-Child, con-ducted Child-to-Child trainingworkshops for prospective facili-tators from different mandals.Fittingly, the first workshop washeld in Gundmal, where the dis-abled children in the ArunaSangam played a central role.Leadership by the children them-selves is a key to success ofChild-to-Child.

Possibility of disability sangamsin managing Community BasedRehabilitation

On our visits to the sangams, weencountered a strong felt need forCommunity Based Rehabilitation (CBR).Currently families have to travel far andspend lots for even the most basic rehabili-tation services or assistive devices. Tomake things worse, private doctors and tra-ditional healers often exploit poor familiesby prescribing medicines or herbal remediesfor mental retardation, cerebral palsy, andother disabilities that require developmentalrather than curative measures. (See photos,page 4)

Members of various disability sangamswere eager to start a CBR program in theirvillage. In our discussions , the idea arosethat one or two sangam members could betrained as CBR workers, and the rest of thesangam could assist them. The necessarytraining and back-up, and referrals could bearranged by Commitments, SERC and theState government. The neighborhood hous-es could be used as a CBR center. Alreadythe disabled youngsters in the ArunaSangam, on their own initiative, were mov-ing in this direction.

The leadership of Commitments and SERC wasalready thinking along similar lines. Disabilitysangams could become involved in CBR activ-ities, first in selected villages where interest andpotential were high. They might begin withinformal peer counseling. (For example, amother with years of experience assisting herdisabled child could advise and assist less expe-rienced mothers.) CBR training could be incre-mental. Through short workshops, trainees(chosen for their interest, ability and compas-sion) could be taught basic skills. Throughhands-on apprenticeship, they master aspects ofphysical rehabilitation. They could employChild-to-Child activities to help special needschildren gain entry into schools. They couldlead activities to promote community respectand opportunities. And they could organize pre-vention campaigns.

Development of CBR activities at the villagelevel is one of the program goals. However,in the Mahabubnager project, rehabilitationservices are still largely provided by visitingprofessionals. While a good back-up andreferral system is essential for effective CBR,much more needs to be done to train localCBR workers at the village level. And ifthese CBR workers are disabled persons,their commitment, empathy and quality ofwork is likely to be better.

In some of the disability sangams, such as inGundmal, there are bright young disabledpersons who would jump at the chance tobecome village CBR workers, and wouldlikely do an excellent job. Some might go onto become leaders for human rights in theircommunities. Their contribution would helpwin appreciation and respect for disabledpersons in general.

(For examples of how this empoweringprocess has evolved in Mexico and else-where, see the books, Disabled VillageChildren and Nothing About Us Without Us.)

6

Ram (boy on right) and another boy were fascinated by the“Playground for All” pictures in Nothing About Us Without Us.

3

A complaint about many surveys in and ofdisadvantaged communities is that theybuild up people’s expectations, but thepromised benefits never arrive. People feelused, deceived, and stop cooperating.

To avoid this, in Andhra Pradesh, the surveyincluded a service component. It broughtdisabled people and their families together todiscuss their needs, learn their legal entitle-ments, and begin to take organized action.At the same time, it launched a constructivedialogue with the larger community and withvillage authorities to help open the way formore equal opportunities and more account-ability. It also helped the disabled personsgain free access to medical and orthopedicfacilities.

Good role models. In many ways, theemployment and leadership of disabled per-sons as key actors in this Andhra Pradeshanalytic survey was a groundbreakingapproach. The fact that the facilitators werethemselves disabled provided excellent rolemodels for the disabled villagers and theirfamilies. The methodology deserves dissem-ination. Fortunately, it is well documented,and much of the community process wasvideo-taped. An important resource.

Meeting with the information gatherers.

Before the disabled "information gatherers"began to visit the villages, they went throughan intensive, highly participatory learningprocess using methods of group dynamics,confidence building, peer counseling, and"strategies of empowerment." The sessionsinvolved role plays in which everyone prac-ticed listening to and learn from one anotheras equals. These methods - drawing on the"pedagogy of liberation" of Paulo Freire --were designed to help them reach out to mul-tiple disadvantaged persons, build their self-esteem, and win their trust, so that thoseinterviewed could gain the self-confidenceand trust to speak openly of their true feel-ings, needs, obstacles, fears, and hopes.

In my meeting with the information gatherersat Action Aid, we started by introducing our-selves and describing the difficulties andchallenges we had experienced as disabledpersons, from early childhood on, as well asthe circumstances and events that hadchanged our lives for the better. Many of thegroup had grown up in extreme poverty.Nevertheless, I realized that this group wasexceptional, in that all of them had somehowsucceeded in finding decent work, gainingself-esteem, and playing a dignified, produc-tive role in society.

The information gatherers described the per-vasive social and economic obstacles theyhad struggled to overcome. For example,one village girl, who belonged to the Dalit

(untouchable) caste, described herself asbeing “triple disadvantaged.” She was: 1)disabled (one leg paralyzed by polio), 2)female, and 3) a Dalit, i.e. born into the "low-est," most denigrated social caste. Added toall this, she had grown up in a situation ofrural poverty. Tellingly, she said that thehardship and social stigma she had sufferedfor being Dalit was greater than that of beingdisabled. This comment made clear theimportance of looking at disability within theentire sociocultural and economic context.

As I listened to the different members of thestudy team describe their personal backgroundsand difficulties, I was impressed by how far theyhad come in terms of coping skills and personalesteem. It was apparent that their being involvedin the DPIG survey/analysis - designed to give avoice to rural poor disabled persons - has beenan eye-opening and empowering process notonly for the disabled persons interviewed, butalso for these information gatherers themselves.A true win-win situation.

Most of the disabled information gatherers hadnot known each other before they were recruit-ed. But in less than a year they had developed astrong sense of camaraderie and solidarity.More than most disabled persons (where thepecking order between different disabilities canbe as unkind as that in society as a whole), theyreached out to include one another as equals.For example, those who had learned sign lan-guage (to interview deaf persons) enthusiasti-cally translated our full discussion into sign,for the 2 participants who were deaf.

Disabled sangam members and social activists conduct an Disability Awareness Festival for all the village.

This village boy with cerebral palsy, who used to fearbeing seen in the village, has new confidence nowthat he has joined a self-help group of disabled persons and takes part in community events.

5

Neighborhood Houses. Many DisabilitySangams were eager to start their own"neighborhood house." They envisioned thisas a place where disabled people could meetand exchange ideas, organize activities, mas-ter new skills, assist one another with thera-py, and learn from visiting rehab profession-als. Most important, they saw theNeighborhood House as a place where dis-abled people can play a visible, pro-activerole in the community.

Some of the sangams have applied toCommitments for financial help in setting up aneighborhood house. Two groups were soeager that they have rented a building oracquired donated land, even beforeCommitments had responded to their request.

Déjà vu - PROJIMO makes it to India

Our first visit was to the Aruna VikalangulaSangam in Gundmal village. The SangamPresident is a 16-year-old schoolboy who hasone leg withered by polio. Most of thesangam’s members are, in fact, school-agedchildren. The rest are adults of every age,with diverse disabilities, mostly physical.

The young Gundmal group told us excitedlyabout their new "Neighborhood Rehabilit-ation House," an old building they wereloaned by the village panchyat (communitycouncil) and are creatively adapting. Theywere obviously proud of it and were eager totake us there. Our visit coordinator said wewere pressed for time, but I begged to see theHouse, and he agreed.

As we approached the Neighborhood House,I had a sudden feeling of déjà vu. In front ofthe old building, and inside, the youths hadbuilt a variety of rustic playground and reha-bilitation equipment. These included parallelbars made from bamboo poles and forkedsticks, a simple pressed-earth ramp for easyaccess, a swing made with an old car tire, a

large barrel padded with foam rubber forphysical therapy, and an arm-exercise devicemade with a wheelchair wheel mounted on awall. All looked disconcertingly familiar.

"Where did you get the ideas to make all thislocal, low-cost equipment?" I asked.

"From a book somebody gave us calledVillage Disabled Children," answered one ofthe disabled youths. When the head ofCommitments told him I was the author ofthe book (actually titled Disabled VillageChildren), his jaw fell open with surprise.From that moment on the whole group wel-comed me like an old friend.

Exploring alternatives to school

The next day we visited the Sudha ChandranVikalangula Sangam in Hakeempet village.Here the dynamics were quite different.Most of the children in the sangam weredevelopmentally delayed. Suggested expla-nations for this high incidence of mentalretardation ranged from consanguineousmarriages (inbreeding), to pesticides or otherchemical contaminants, to the prevalence ofpremature birth due to the high rates of mal-nutrition and anemia of pregnant women. (Inrural India rates of anemia in women of childbearing age run as high as 90%.)

In our discussion, it became clear that manyof these mentally slow children sufferedfrom harsh rejection and exclusion, some-times even within their own families.

For example, one 11-year-old mildly retard-ed girl at the meeting was very withdrawnand morose (and very thin). Since her moth-er had died 3 years before, she lived with herfather, who was also mentally a bit slow. Hebrought her to the sangam meetings onlybecause the group urged him to do so. Thegirl could talk, but her father would not lether speak for herself. He said he had not sent

her to school or sought any kind of help forher because she was "totally useless."

Other parents had better reasons for not send-ing their children to school. For mentallyslow children, they said, schooling was cruel.Mothers said they had tried to get their chil-dren into the local primary school, but withfrustrating results. Even when the childrenwere accepted, teachers had little patiencewith them. They scolded or humiliated themin front of the other children, who learnedsimilar behavior from their teachers.

At the Sangam meeting there was an angrylooking mildly retarded 13 year old boynamed Ram, who sat on the floor all hunchedinto a ball, scowling. Ram's mother said shehad tried several times to place him inschool. But after a few days he had alwaysrun away. Now the boy flatly refused to go,even when she threatened to beat him.

This led to an eye-opening discussion as towhether school was always the best optionfor the slow learning child, especially ifteachers and other children fail to treat themwith respect or help them learn in a support-ive way at their own pace.

I reflected on our experience in rural Mexico.Sometimes a mentally retarded child is hap-pier, learns more, and feels he or she is mak-ing a greater contribution by helping his orher parents in the farm work, or by doing asimple, if repetitive job.

David Werner with Aruna Sangam disabled youths,by the parallel bars at their Neighbor-hood House.

Arm exercise device uses an old wheelchair wheel.

Sangam members demonstrate the tire swing.

4

"Sangams" (Self-Help Groups)as an entry point to poverty reduction

As a pilot project of the APRPRP, aCommunity Based Disability Interventionhas been introduced in MahabubnagarDistrict, one of the poorest in AndhraPradesh. Since 1984 the Commitments teamhas been working in Mahabubnagar, in com-munity development, poverty reduction, anddisability rights. The goal is to empower vul-nerable groups by “building participatoryand self-managed institutions and developingsustainable livelihood capacities.”

One of the APRPRP approaches to povertyreduction is through the formation and assis-tance of "sangams" (common interest self-help groups) among the most disadvantagedgroups (women, Dalits, landless peasants,disabled persons, etc.) at the village level.Through the sangam, people can worktogether to improve their situation, bothsocially and economically. They can definetheir common needs and biggest barriers, andcollectively take problem-solving action including income-generating activities.

These "from the bottom up" activities aresupplemented by the “from the top down”:APRPRP personnel who try to win coopera-tion and support from officials at the village,mandal, district, and state level, in matters ofschooling, safety, employment, fair wages(or at least legal minimum wages), access tolegal entitlements, and basic human rights.

"Vikalangula Sangams"

In 1999, in the small village of Kosgi,Commitments opened a modest ProjectOffice, which doubles as a community reha-bilitation and training center. In 6 mandals,the team has helped to start 70 "VikalangulaSangams" (self-help groups of disabled per-sons). To help organize and facilitate the ini-tiative, Commitments has trained several“Community Coordinators" (CCs), as well as20 village activists and social workers, most-ly disabled. I was impressed by the dedica-tion and ability of this group. The fact that3/4 of them are disabled contributes to theirunderstanding of key issues and commitmentto empowerment of other disabled persons.

In this, Commitments is to be applaud-ed. In other programs, such leadershipby disabled persons is less than com-mon. Even in the (relatively few)Community Based Rehabilitation(CBR) programs in India, seldom dodisabled persons play leading roles inprogram implementation. If thisCommitments model of having pro-grams for disabled persons staffed bydisabled persons is successfullyscaled up within the statewideAPRPRP program -- as is the plan --it will be a breakthrough of far-reach-ing significance.

Visits to "Disability Sangams”

The program staff (who loveacronyms) refer to the VikalangulaSangams as DCIGs: short forDisability-oriented Common InterestGroups. In smaller villages there isoften a single Disability Sangam with15 to 20 members. At meetings, dis-abled children and mentally handi-capped persons are usually accompa-ny by their parents. (However, Isoon discovered, some of the olderchildren play important leadershiproles themselves).

Reaching across barriers.

In the Disability Sangams we visited, mem-bers made a conscious effort to reach out andinclude all disabled persons in the village,whatever their disability or social status. Interms of breaking down entrenched barriers,this was a big step forward. Because of theircommon identity as "disabled persons,"sangam members’ are more willing to reachout to others across the traditional walls ofclass, caste, gender, and even generation(adults to children). Persons who would oth-erwise never have spoken to each other - andcertainly not on an equal level -- were begin-ning to do so. And by doing so, they discov-er the other things they had in common, apartfrom disability. In terms of transcendingentrenched social barriers, the sangams arereal bridge builders.

Fighting for entitlements.

What impressed me most on visiting thesangams was people’s energy and enthusi-asm in trying to collectively improve theirsituation. Nearly all the groups have beenmaking an organized demand for their legalcertification and entitlements (which hasproved an uphill battle). They have workedto get disabled children into schools (whichis their legal right, but not easy). And withthe help of Commitments, they are striving toget necessary medical care, surgery, andassistive devices they need.

Winning respect in the community.

In all the Disability Sangams we visited,members said that one of their biggestaccomplishments so far has been their cam-paign to be treated with respect. Awareness-raising activities, including educational streettheatre, have reportedly had an impact onchanging how people see disability.

"Now people don't call us 'the lame boy' or'the blind girl' but address us by our realnames," children said proudly.

When I heard this, from my own childhood Irecalled how important "names" can be.I explained to the group that as a boy(because I limped due to a hereditary muscu-lar atrophy) my classmates nicknamed me"Rickets." I still cringe at the memory! Alas,at that time and place there was noVikalangula Sangam to provide group sup-port or raise community awareness.

OPEN-AIR THEATER TO RAISE AWARENESS

The sangams use village theater to raise awareness about dis-ability rights. Too often, both doctors and healers abuse andexploit disabled persons. Here a village doctor refuses to treata blind man who was bitten by a deadly snake. “If he dies, sowhat” says the doctor. “He’s of no use anyway!”

In this skit, parents take their mentally retarded girl to a quack, whosells them costly medicines “to cure her.” The traditional healer doesthe same. Villagers learn the importance of being kind to such achild, and helping her learn basic skills.

5

Neighborhood Houses. Many DisabilitySangams were eager to start their own"neighborhood house." They envisioned thisas a place where disabled people could meetand exchange ideas, organize activities, mas-ter new skills, assist one another with thera-py, and learn from visiting rehab profession-als. Most important, they saw theNeighborhood House as a place where dis-abled people can play a visible, pro-activerole in the community.

Some of the sangams have applied toCommitments for financial help in setting up aneighborhood house. Two groups were soeager that they have rented a building oracquired donated land, even beforeCommitments had responded to their request.

Déjà vu - PROJIMO makes it to India

Our first visit was to the Aruna VikalangulaSangam in Gundmal village. The SangamPresident is a 16-year-old schoolboy who hasone leg withered by polio. Most of thesangam’s members are, in fact, school-agedchildren. The rest are adults of every age,with diverse disabilities, mostly physical.

The young Gundmal group told us excitedlyabout their new "Neighborhood Rehabilit-ation House," an old building they wereloaned by the village panchyat (communitycouncil) and are creatively adapting. Theywere obviously proud of it and were eager totake us there. Our visit coordinator said wewere pressed for time, but I begged to see theHouse, and he agreed.

As we approached the Neighborhood House,I had a sudden feeling of déjà vu. In front ofthe old building, and inside, the youths hadbuilt a variety of rustic playground and reha-bilitation equipment. These included parallelbars made from bamboo poles and forkedsticks, a simple pressed-earth ramp for easyaccess, a swing made with an old car tire, a

large barrel padded with foam rubber forphysical therapy, and an arm-exercise devicemade with a wheelchair wheel mounted on awall. All looked disconcertingly familiar.

"Where did you get the ideas to make all thislocal, low-cost equipment?" I asked.

"From a book somebody gave us calledVillage Disabled Children," answered one ofthe disabled youths. When the head ofCommitments told him I was the author ofthe book (actually titled Disabled VillageChildren), his jaw fell open with surprise.From that moment on the whole group wel-comed me like an old friend.

Exploring alternatives to school

The next day we visited the Sudha ChandranVikalangula Sangam in Hakeempet village.Here the dynamics were quite different.Most of the children in the sangam weredevelopmentally delayed. Suggested expla-nations for this high incidence of mentalretardation ranged from consanguineousmarriages (inbreeding), to pesticides or otherchemical contaminants, to the prevalence ofpremature birth due to the high rates of mal-nutrition and anemia of pregnant women. (Inrural India rates of anemia in women of childbearing age run as high as 90%.)

In our discussion, it became clear that manyof these mentally slow children sufferedfrom harsh rejection and exclusion, some-times even within their own families.

For example, one 11-year-old mildly retard-ed girl at the meeting was very withdrawnand morose (and very thin). Since her moth-er had died 3 years before, she lived with herfather, who was also mentally a bit slow. Hebrought her to the sangam meetings onlybecause the group urged him to do so. Thegirl could talk, but her father would not lether speak for herself. He said he had not sent

her to school or sought any kind of help forher because she was "totally useless."

Other parents had better reasons for not send-ing their children to school. For mentallyslow children, they said, schooling was cruel.Mothers said they had tried to get their chil-dren into the local primary school, but withfrustrating results. Even when the childrenwere accepted, teachers had little patiencewith them. They scolded or humiliated themin front of the other children, who learnedsimilar behavior from their teachers.

At the Sangam meeting there was an angrylooking mildly retarded 13 year old boynamed Ram, who sat on the floor all hunchedinto a ball, scowling. Ram's mother said shehad tried several times to place him inschool. But after a few days he had alwaysrun away. Now the boy flatly refused to go,even when she threatened to beat him.

This led to an eye-opening discussion as towhether school was always the best optionfor the slow learning child, especially ifteachers and other children fail to treat themwith respect or help them learn in a support-ive way at their own pace.

I reflected on our experience in rural Mexico.Sometimes a mentally retarded child is hap-pier, learns more, and feels he or she is mak-ing a greater contribution by helping his orher parents in the farm work, or by doing asimple, if repetitive job.

David Werner with Aruna Sangam disabled youths,by the parallel bars at their Neighbor-hood House.

Arm exercise device uses an old wheelchair wheel.

Sangam members demonstrate the tire swing.

4

"Sangams" (Self-Help Groups)as an entry point to poverty reduction

As a pilot project of the APRPRP, aCommunity Based Disability Interventionhas been introduced in MahabubnagarDistrict, one of the poorest in AndhraPradesh. Since 1984 the Commitments teamhas been working in Mahabubnagar, in com-munity development, poverty reduction, anddisability rights. The goal is to empower vul-nerable groups by “building participatoryand self-managed institutions and developingsustainable livelihood capacities.”

One of the APRPRP approaches to povertyreduction is through the formation and assis-tance of "sangams" (common interest self-help groups) among the most disadvantagedgroups (women, Dalits, landless peasants,disabled persons, etc.) at the village level.Through the sangam, people can worktogether to improve their situation, bothsocially and economically. They can definetheir common needs and biggest barriers, andcollectively take problem-solving action including income-generating activities.

These "from the bottom up" activities aresupplemented by the “from the top down”:APRPRP personnel who try to win coopera-tion and support from officials at the village,mandal, district, and state level, in matters ofschooling, safety, employment, fair wages(or at least legal minimum wages), access tolegal entitlements, and basic human rights.

"Vikalangula Sangams"

In 1999, in the small village of Kosgi,Commitments opened a modest ProjectOffice, which doubles as a community reha-bilitation and training center. In 6 mandals,the team has helped to start 70 "VikalangulaSangams" (self-help groups of disabled per-sons). To help organize and facilitate the ini-tiative, Commitments has trained several“Community Coordinators" (CCs), as well as20 village activists and social workers, most-ly disabled. I was impressed by the dedica-tion and ability of this group. The fact that3/4 of them are disabled contributes to theirunderstanding of key issues and commitmentto empowerment of other disabled persons.

In this, Commitments is to be applaud-ed. In other programs, such leadershipby disabled persons is less than com-mon. Even in the (relatively few)Community Based Rehabilitation(CBR) programs in India, seldom dodisabled persons play leading roles inprogram implementation. If thisCommitments model of having pro-grams for disabled persons staffed bydisabled persons is successfullyscaled up within the statewideAPRPRP program -- as is the plan --it will be a breakthrough of far-reach-ing significance.

Visits to "Disability Sangams”

The program staff (who loveacronyms) refer to the VikalangulaSangams as DCIGs: short forDisability-oriented Common InterestGroups. In smaller villages there isoften a single Disability Sangam with15 to 20 members. At meetings, dis-abled children and mentally handi-capped persons are usually accompa-ny by their parents. (However, Isoon discovered, some of the olderchildren play important leadershiproles themselves).

Reaching across barriers.

In the Disability Sangams we visited, mem-bers made a conscious effort to reach out andinclude all disabled persons in the village,whatever their disability or social status. Interms of breaking down entrenched barriers,this was a big step forward. Because of theircommon identity as "disabled persons,"sangam members’ are more willing to reachout to others across the traditional walls ofclass, caste, gender, and even generation(adults to children). Persons who would oth-erwise never have spoken to each other - andcertainly not on an equal level -- were begin-ning to do so. And by doing so, they discov-er the other things they had in common, apartfrom disability. In terms of transcendingentrenched social barriers, the sangams arereal bridge builders.

Fighting for entitlements.

What impressed me most on visiting thesangams was people’s energy and enthusi-asm in trying to collectively improve theirsituation. Nearly all the groups have beenmaking an organized demand for their legalcertification and entitlements (which hasproved an uphill battle). They have workedto get disabled children into schools (whichis their legal right, but not easy). And withthe help of Commitments, they are striving toget necessary medical care, surgery, andassistive devices they need.

Winning respect in the community.

In all the Disability Sangams we visited,members said that one of their biggestaccomplishments so far has been their cam-paign to be treated with respect. Awareness-raising activities, including educational streettheatre, have reportedly had an impact onchanging how people see disability.

"Now people don't call us 'the lame boy' or'the blind girl' but address us by our realnames," children said proudly.

When I heard this, from my own childhood Irecalled how important "names" can be.I explained to the group that as a boy(because I limped due to a hereditary muscu-lar atrophy) my classmates nicknamed me"Rickets." I still cringe at the memory! Alas,at that time and place there was noVikalangula Sangam to provide group sup-port or raise community awareness.

OPEN-AIR THEATER TO RAISE AWARENESS

The sangams use village theater to raise awareness about dis-ability rights. Too often, both doctors and healers abuse andexploit disabled persons. Here a village doctor refuses to treata blind man who was bitten by a deadly snake. “If he dies, sowhat” says the doctor. “He’s of no use anyway!”

In this skit, parents take their mentally retarded girl to a quack, whosells them costly medicines “to cure her.” The traditional healer doesthe same. Villagers learn the importance of being kind to such achild, and helping her learn basic skills.

We concluded that there is need for flexibilityand common sense, both in questions of school-ing, and of "child labor." To simply say,"Schooling is good," and "Child labor is bad" issimplistic. We should ask ourselves, "Wheredoes the the child seem happiest, learn most, andbest develop his or her potential?'

Whether, under the circumstances, the parentsin Hakeempet should try to get their mentallyretarded children into the school, remainedunclear. What was very clear was that thesechildren needed an opportunity to play andinteract and learn with other children.

We told the group about the rustic“Playground for All Children” at PROJIMOin rural Mexico, and about the play and rehabequipment that the disabled children hadmade at the sangam in Gundmal. Pulling outa copy of Nothing About Us Without Us, Ishowed the sangam members drawings ofeasy-to-make playground equipment. Thegrown-ups showed polite interest. But thechildren were fascinated with the idea, andwith the book. Two young boys poured overit for half an hour. One was Ram - the angryretarded boy -- who suddenly came to life. When the Sangam leader asked Ram if he

would like to help build such a playgroundwith other children, he scowled silently for amoment. Then with a big grin he nodded,Yes!

Integrating Disabled Kids through "Child-to-Child"

One of the biggest benefits of schoolingpotentially, is that it gets children in a com-munity working and playing together, ascompanions and even as equals. But this

potential is not always met -- and it is herethat "Child-to-Child" can make a difference.Whether in school or out of school, it canhelp a group of children reach out, include,and assist "the child who is different."

The Child-to-Child methodology started inthe International Year of the Child (1979)and is now practiced in over 70 countries. Itbegan with the idea of teaching school-agedchildren to help meet the health and develop-ment needs of their baby brothers and sisters.(For example, the importance of giving lotsof fluid to an infant with diarrhea.) ButChild-to-Child has evolved. Now it includesactivities and games to sensitize children torelate in a friendly and enabling ways to chil-dren with special needs. (Our books DisabledVillage Children and Nothing About UsWithout Us both have sections on Child-to-Child disability-related activities. Bothbooks are available in full on our web site(www.healthwrights.org)

In Gundmal, Hakeempet, and other sangams,whenever we discussed Child-to-Child, therewas a lot of interest, especially among thechildren. I am happy to report thatCommitments has followed up on this inter-

est. In recent months, B.Venkatesh, who has a lot of expe-rience with Child-to-Child, con-ducted Child-to-Child trainingworkshops for prospective facili-tators from different mandals.Fittingly, the first workshop washeld in Gundmal, where the dis-abled children in the ArunaSangam played a central role.Leadership by the children them-selves is a key to success ofChild-to-Child.

Possibility of disability sangamsin managing Community BasedRehabilitation

On our visits to the sangams, weencountered a strong felt need forCommunity Based Rehabilitation (CBR).Currently families have to travel far andspend lots for even the most basic rehabili-tation services or assistive devices. Tomake things worse, private doctors and tra-ditional healers often exploit poor familiesby prescribing medicines or herbal remediesfor mental retardation, cerebral palsy, andother disabilities that require developmentalrather than curative measures. (See photos,page 4)

Members of various disability sangamswere eager to start a CBR program in theirvillage. In our discussions , the idea arosethat one or two sangam members could betrained as CBR workers, and the rest of thesangam could assist them. The necessarytraining and back-up, and referrals could bearranged by Commitments, SERC and theState government. The neighborhood hous-es could be used as a CBR center. Alreadythe disabled youngsters in the ArunaSangam, on their own initiative, were mov-ing in this direction.

The leadership of Commitments and SERC wasalready thinking along similar lines. Disabilitysangams could become involved in CBR activ-ities, first in selected villages where interest andpotential were high. They might begin withinformal peer counseling. (For example, amother with years of experience assisting herdisabled child could advise and assist less expe-rienced mothers.) CBR training could be incre-mental. Through short workshops, trainees(chosen for their interest, ability and compas-sion) could be taught basic skills. Throughhands-on apprenticeship, they master aspects ofphysical rehabilitation. They could employChild-to-Child activities to help special needschildren gain entry into schools. They couldlead activities to promote community respectand opportunities. And they could organize pre-vention campaigns.

Development of CBR activities at the villagelevel is one of the program goals. However,in the Mahabubnager project, rehabilitationservices are still largely provided by visitingprofessionals. While a good back-up andreferral system is essential for effective CBR,much more needs to be done to train localCBR workers at the village level. And ifthese CBR workers are disabled persons,their commitment, empathy and quality ofwork is likely to be better.

In some of the disability sangams, such as inGundmal, there are bright young disabledpersons who would jump at the chance tobecome village CBR workers, and wouldlikely do an excellent job. Some might go onto become leaders for human rights in theircommunities. Their contribution would helpwin appreciation and respect for disabledpersons in general.

(For examples of how this empoweringprocess has evolved in Mexico and else-where, see the books, Disabled VillageChildren and Nothing About Us Without Us.)

6

Ram (boy on right) and another boy were fascinated by the“Playground for All” pictures in Nothing About Us Without Us.

3

A complaint about many surveys in and ofdisadvantaged communities is that theybuild up people’s expectations, but thepromised benefits never arrive. People feelused, deceived, and stop cooperating.

To avoid this, in Andhra Pradesh, the surveyincluded a service component. It broughtdisabled people and their families together todiscuss their needs, learn their legal entitle-ments, and begin to take organized action.At the same time, it launched a constructivedialogue with the larger community and withvillage authorities to help open the way formore equal opportunities and more account-ability. It also helped the disabled personsgain free access to medical and orthopedicfacilities.

Good role models. In many ways, theemployment and leadership of disabled per-sons as key actors in this Andhra Pradeshanalytic survey was a groundbreakingapproach. The fact that the facilitators werethemselves disabled provided excellent rolemodels for the disabled villagers and theirfamilies. The methodology deserves dissem-ination. Fortunately, it is well documented,and much of the community process wasvideo-taped. An important resource.

Meeting with the information gatherers.

Before the disabled "information gatherers"began to visit the villages, they went throughan intensive, highly participatory learningprocess using methods of group dynamics,confidence building, peer counseling, and"strategies of empowerment." The sessionsinvolved role plays in which everyone prac-ticed listening to and learn from one anotheras equals. These methods - drawing on the"pedagogy of liberation" of Paulo Freire --were designed to help them reach out to mul-tiple disadvantaged persons, build their self-esteem, and win their trust, so that thoseinterviewed could gain the self-confidenceand trust to speak openly of their true feel-ings, needs, obstacles, fears, and hopes.

In my meeting with the information gatherersat Action Aid, we started by introducing our-selves and describing the difficulties andchallenges we had experienced as disabledpersons, from early childhood on, as well asthe circumstances and events that hadchanged our lives for the better. Many of thegroup had grown up in extreme poverty.Nevertheless, I realized that this group wasexceptional, in that all of them had somehowsucceeded in finding decent work, gainingself-esteem, and playing a dignified, produc-tive role in society.

The information gatherers described the per-vasive social and economic obstacles theyhad struggled to overcome. For example,one village girl, who belonged to the Dalit

(untouchable) caste, described herself asbeing “triple disadvantaged.” She was: 1)disabled (one leg paralyzed by polio), 2)female, and 3) a Dalit, i.e. born into the "low-est," most denigrated social caste. Added toall this, she had grown up in a situation ofrural poverty. Tellingly, she said that thehardship and social stigma she had sufferedfor being Dalit was greater than that of beingdisabled. This comment made clear theimportance of looking at disability within theentire sociocultural and economic context.

As I listened to the different members of thestudy team describe their personal backgroundsand difficulties, I was impressed by how far theyhad come in terms of coping skills and personalesteem. It was apparent that their being involvedin the DPIG survey/analysis - designed to give avoice to rural poor disabled persons - has beenan eye-opening and empowering process notonly for the disabled persons interviewed, butalso for these information gatherers themselves.A true win-win situation.

Most of the disabled information gatherers hadnot known each other before they were recruit-ed. But in less than a year they had developed astrong sense of camaraderie and solidarity.More than most disabled persons (where thepecking order between different disabilities canbe as unkind as that in society as a whole), theyreached out to include one another as equals.For example, those who had learned sign lan-guage (to interview deaf persons) enthusiasti-cally translated our full discussion into sign,for the 2 participants who were deaf.

Disabled sangam members and social activists conduct an Disability Awareness Festival for all the village.

This village boy with cerebral palsy, who used to fearbeing seen in the village, has new confidence nowthat he has joined a self-help group of disabled persons and takes part in community events.

WANTED: Village health care

In the villages the lack of adequate healthservices is a huge problem, especially for dis-abled people and the "poorest of the poor."In theory, Primary Health Care in India is auniversal human right. In practice, hundredsof millions of people face enormous obsta-cles to getting the health care they need.

In India government health services exist onseveral levels. At the village level are the"anganwadis" or village health workers,mostly village girls with a couple of weekstraining. Their skills and responsibilities areso limited that they have little credibilityamong the villagers. They weigh babies, fillout forms, and help rally people for immu-nization. However, they are taught almost nocurative skills. They know less about usefulmedicines (most of which they are forbiddento use) than do local shop keepers or the tra-ditional healers. They refer the sick orinjured to the closest District Health Center.

But District Health Centers (the second levelof service) are few and far between. Timeand cost to get there, and the series of bribesor "tips" required to get service, are such thatthe poor often go untreated. Or worse, theyuse up their limited food money on transport,bribes, and (recently introduced) "user fees"(or, alternatively, on local private doctors.)As a result, their hungry children becomeeven less resistant to the "diseases of pover-ty." Thus "health care" becomes anothercause of ill health, disability, and death.Health department officials concede that theservices of district health centers are ofteninaccessible to the most disadvantaged.

At the third level are public hospitals andsurgical centers in larger towns and cities.Indigent and disabled persons are legallyentitled to free care, along with "entitle-ments" such as bus and train passes. Butagain, the combination of bureaucracy andcorruption (bribes) deprives the neediest peo-ple. Underlying these problems is the factthat the government budgets only a smallfraction of what is needed to provide the ser-vices and entitlements guaranteed by law.

Enormous unmet need.

All this means that in rural Andhra Pradeshthere is an enormous need for low-cost, com-petent, health services provided by, caringhealth workers at the village level.

A possible solution:Disabled persons as health workers, backed by their sangams.

In our discussions with villagers, SERC, andthe APRPRP planners, an exciting possibili-ty arose. Why not train selected members ofthe disability sangams as village healthworkers (VHWs)? A comprehensive, partici-patory approach to Primary Health Carecould be revived at the village level. Youngdisabled women (and men?) from thesangams could be trained as an upgraded ver-sion of anganwadis. Their sangam couldform a back-up team for health promotion.The new anganwadis (or VHWs) couldembrace preventive, curative, rehabilitative,and promotive curative aspects of PHC in amanner that could more fully protect healthof the poorest, most vulnerable people.Backed by their sangams, they could involveother (non-disabled) sangams, school chil-dren (through Child-to-Child activities) andother villagers, in health promoting action.Together they could address issues such aswater supply, sanitation, malaria control,tree-planting, sustainable agriculture.

This way, disabled persons would play a cen-tral role in the community’s well being.People would look at their strengths, not theirweaknesses, and include them more fully.

This approach could also help bring aboutcloser links between Primary Health Careand Community Based Rehabilitation. The"Neighborhood Houses," might evolve intoCommunity Based Rehabilitation and HealthPromotion Centers" -- as part of an empow-ering village-based development paradigm.

Good health care reduces poverty

Studies in India show that on the averagepoor families spend 19% of their familyincome on health care-related expenses.Costs related to catastrophic illness are oneof the main events that push families thathave managed to cope into absolute poverty.

Empowering communities to better meettheir health needs at low cost can be animportant step toward reducing poverty. Inthe long run it can save more money than itcosts (for people and government alike).

Potential for “scaling up”

Within the self-help disability sangams inMahabubnagar, the interest and potentialexist to improve health and rehabilitation ser-vices at the village level. Such an empower-ing approach could help meet an urgent needof the most vulnerable people. It would alsoincrease respect and opportunities for dis-abled persons. And reduce poverty.

This community-based approach could beintroduced, on trial basis, as part of theAndhra Pradesh Rural Poverty ReductionProgram. The APRPRP, as a state-wide pro-gram, has the necessary links to governmentand to the health, education, and other rele-vant ministries. If successful, the approachcan be incrementally scaled up to include all500 mandals under the coverage of theAPRPRP. And from there, who knows?

Conclusion

Clearly, to substantially reduce poverty inIndia - or anywhere else - will require trans-formation of unjust socioeconomic and polit-ical structures that go far beyond village-based health and rehabilitation measures. But in the meantime, such measures can helpthe most vulnerable villagers cope a bit moresuccessfully. By coming together to solvetheir problems, perhaps in time a criticalmass of "people who care for one another asequals" will be reached so that, collectively,they can begin to demand and work for morefar-reaching change.

7

Exciting work with disabled children is also takingplace in the slums of Hyderabad, where local girlshave become innovative CBR facilitators.

2

In-depth analytic survey of disabilityneeds in rural Ardhra Pradesh

The Disability Component of the AndhraPradesh Rural Poverty Reduction Programhas many features of Community BasedRehabilitation (CBR). However it also has anessential quality of the Independent LivingMovement, in that it tries to open the way forleadership by disabled persons themselves.

Disabled persons played a leading role, evenin the planning stage of the program, byconducting the initial survey for an "In-depthAnalysis of the Disability Issues” in the state.To oversee the survey, SERC chose theRegional Office of "Action Aid," an NGObased in the state capital, Hyderabad. ActionAid has a long history of working for therights and opportunities of marginalizedgroups, especially disabled persons.

To plan the survey, Action Aid met with dis-abled activists in Hyderabad, as well as fromthe rural area. Together they designed a cre-ative, culturally appropriate strategy for con-ducting the in-depth survey. The result was aremarkably sensitive, participatory processwith some unique features.

Avoiding the typical problems with surveys.Surveys in which outsiders question peoplein poor communities have in recent yearsdrawn a lot of criticism. Because they dis-trust the interviewers or feel humiliated bytheir questions, too often those interviewedgive false or misleading information. Or theytell the interviewers what they think theywant to know. When interviewers are pushy,condescending, or insensitive to the socio-cultural dynamics of the community, data iseven more likely to be invalid.The communications problems common tosurveys were minimized in the AndhraPradesh disability survey in 3 ways:

1. The information gatherers were them-selves disabled, giving them insight andmaking them peers of those primarily beinginterviewed.2. The information gatherers were speciallytrained in cross-cultural sensitivity, methodsof empowerment, and community mobiliza-tion.. (One of the facilitators was none otherthan my old friend, B. Venkatesh, a blind dis-ability-rights activist who visited PROJIMOmany years ago); 3) The survey was combined with a dynamicprocess of group building, communityawareness raising and collective action.

Recruitment of Interviewers. To recruit theinformation gatherers, Action Aid carefullyscreened scores of young, literate, disabledpersons, from which they picked a group of80. In the selection, insight, attitudes, and ahumble background weregiven more weight than acad-emic qualifications. On pur-pose, the group included per-sons with a wide range of dis-abilities. It also included rep-resentatives from more vul-nerable groups, especiallypersons of rural origins,women, those from lowercastes, including Dalits(untouchables), and personsfrom religious minorities(Muslims, Christians).

Coverage of the Survey: Thestudy covered 52 villagesfrom 20 mandals (groups ofvillages) in 15 districts.Locations were selectedbased on those with thebiggest 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, espe-cially those with high fluoride content (acause of a widespread disability: fluorosis)* areas with high unemployment or a largepopulation of peasants who are landless orhave very small holdings* areas with very low literacy rates.

In the survey, all of these factors (and manyothers) were evaluated in terms of theirimpact on incidence of disability and influ-ence on disabled persons’ well-being . To survey a village (usually with 1000 to2000 residents), a team of information gath-erers would stay in the village for 5 days, liv-ing in the homes of persons with differentdisabilities. Whenever possible, the teamleader would stay in the home of the mostseverely disabled or marginalized person orfamily in the village (paying the costs). They

would do their best to become a friend of thedisabled person, the family, and neighbors,trying to gain insight into their spectrum ofproblems, while helping to resolve or lookfor ways of resolving the ones they could.

Humanitarian approach: The study--which was designed around "a rights-basedapproach to Community Based Rehabili-tation (CBR)" -- proactively addressed thefollowing areas:

* Rescue planning and protection for the des-titute among the disabled persons* Protection of the rights of "the disabled"* Education* Medical integration - care, aids and appli-ances* Social reintegration * Work and income generating opportunities.

But the information gatherers did far morethan collect data. They brought disabled peo-ple together to discuss their mutual problemsand needs. They helped groups of disabled persons begin to form self-helpgroups, or "sangams." They conductedawareness raising activities, including publictheater, in the villages surveyed. And beforeleaving the village they organized a kind of"disability pride" march of disabled peopleand their families.

We visited self-help groups in villages in Mahabubnagar District of Andhra Pradesh, where ox carts are still the main form of transportation.

PROJIMO Community BasedRehabilitation Program

run by and for disabled villagers in western Mexico (Coyotitan)

PROJIMO Skills Training and Work Program

run by disabled youth inrural Mexico (Duranguito)

Newsletter from the Sierra Madre #48December, 2002

Enabling the “poorest of the poor”

In February/March, 2002, I (David Werner)was invited to India as a consultant to a com-prehensive program to reduce povertythroughout the rural area of Andhra Pradesh.

Aware that many large-scale, top-down programs to combat povertyhave failed to reach the most desti-tute and marginalized persons--andconsequently have marginalizedthem more--the designers of theAndhra Pradesh Rural PovertyReduction Program are taking adifferent approach. The focus willbe on the most needy and vulnera-ble groups in rural areas (where 2/3of the state's 76 million populationlive).

These "most vulnerable" groupsinclude:

* 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 participationand empowerment, the plan is for represen-tatives from all of these most vulnerablegroups to play a leading role in the develop-ment and implementation of the povertyreduction strategy. This may sound like

common sense. But in a land where class,caste, and gender hierarchies are so deeplyentrenched, achieving effective leadershipand a more equal voice for those who havebeen on the bottom of the pecking order formillennia will be a complex challenge.

The Andhra Pradesh Rural PovertyReduction Program (APRPRP) is under ordi-nance of the state government (whose capi-

tal is Hyderabad, in east-central India) andfinanced in large part by the World Bank.However, local non-government organiza-tions (NGOs) are playing a leading role inboth the program design and field work.

The disability component of the APRPRPis being facilitated by "Commitments," abranch of a very capable Indian NGOcalled the Society for Elimination ofPoverty (SERC). Although the Bankwould have preferred a more mainstreamadvisor, Commitments insisted that I(David Werner) be the "independent con-sultant" to the disability component of theAPRPRP. One reason they wanted mewas that the self-help books, DisabledVillage Children and Nothing About UsWithout Us are so widely used in commu-nity programs in India.

While in India, I met with several groupsthat have translated or are translatingthese books into Telegu, the area’s tradi-

tional language. (One result of my visit wasto engender more cooperation between thediverse programs working in this field.) AlsoI found that the Telegu version of WhereThere Is No Doctor is widely used. And whatpleases me more, facilitators of both commu-nity based health and rehabilitation trainingprograms are using Helping Health WorkersLearn to make their teaching methods morediscovery-based and learner-centered.

The Role of Disabled Persons in OvercomingRural Poverty in Andhra Pradesh, India

This issue takes us to the state of Andhra Pradesh, India, where early this year David Werner went as a consultant for a statewideRural Poverty Reduction Program. Although the consultancy concerned the needs of disabled persons, it turned out that the lackof adequate health care at the village level was a substantial contributing cause of poverty. The possibility arose for self-helpgroups of disabled villagers to play a central role in meeting the health needs of the whole community.

Also, as an insert within this Newsletter, we provide an update on our new Politics of Health Knowledge Network, a joint projectof HealthWrights and the International People’s Health Council. See: www.politicsofhealth.org

Most of the staff and “social activists” of the disability component ofthe APRPRP, piloted by Commitments, are themselves disabled.

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HealthWrightsBoard of Directors

Trude BockRoberto FajardoEmily Goldfarb

Barry GoldensohnBruce HobsonDonald Laub

Eve MaloMyra Polinger

Leopoldo RibotaDavid WernerJason WestonEfraín Zamora

International AdvisoryBoard

Allison Akana – United StatesDwight Clark – Volunteers in Asia

David Sanders – South AfricaMira Shiva – India

Michael Tan – Philippines Pam Zinkin – England

María Zúniga– Nicaragua

CCOONNTTEENNTTSS PPaaggee

THE ROLE OF DISABLED PEOPLE IN REDUCINGPOVERTY IN RURAL ANDHRA PRADESH, INDIA ........1

IN-DEPTH SURVEY AND ANALYSIS OF DISABILITY NEEDS................................................ 2

SANGAMS (SELF-HELP GROUPS) AS AS AN ENTRY POINT TO POVERTY REDUCTION ......... 4

NEIGHBORHOOD HOUSES ...................................... 5

EXPLORING ALTERNATIVES TO SCHOOL.............. 5

INTEGRATING DISABLED KIDS: CHIILD-TO-CHILD.7

WANTED: VILLAGE HEALTH CARE ......................... 7

POSSIBLE SOLUTION: DISABLED PERSONSAS HEALTH WORKERS ....................................... 7

GOOD HEALTH CARE REDUCES POVERTY ........... 7

This issue of NNeewwsslleetttteerr ffrroomm tthhee SSiieerrrraa MMaaddrree was created by:

David Werner - Writing and photos Shefali Gupta - Technical assistanceTrude Bock - Proofreading

Tel: (650) 325-7500 Fax: (650) 325-1080 email: healthwrights@igc.org

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"It is not a sign of good health to be well adjusted to a sick society."

— J. Krishnamurti (1895-1986)

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With the help of the Mana Center’s CommunityBased Rehabilitation program to families in theslums of Hyderabad, this father learns to assist inthe development of his multiply disabled son.

IImmppoorrttaanntt::

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