INT RNATIONAL JOURNAI. 01 Ll'.1'ROSY^ Volume 69. Numhcr 2 ISuppl.l

/'rinted in the U.S.A.(ISSN 01-18-916X)

SOCIAL/ECONOMIC REHABILITATION

Dr. S. D. GokhaleChairman

International Leprosy UnionGurutrayee Smarak

Bharat Scout Ground1799/84, Sadashiv Peth

Pune 411 030, índia

I would like to begin by bringing to you aquotation from Mahatma Gandhi, the greatvisionary of the last century. He says: "Lep-rosy work is not merely medicai relief, it istransforming frustration of life into joy ofdedication, personal ambition into selflessservice.... "

BackgroundLeprosy has a unique dimension. In no

other disease are individuais made to leavetheir families and forced to live as outcasts.For many affected by leprosy, overcomingthe infection is not sufficient to allow theirreturn to a previous lifestyle.

Until recently, those abandoned by theirfamilies were cared for in institutions.Since the treatment lasted for many years,for them the institution was a point of no re-turn. Such institutional approach was con-sidered "rehabilitation." Now we considerit as chronic dependency with little possi-bility of reintegration. With advances intreatment procedures and surgery, this insti-tution-based "rehabilitation" has becomeoutdated. It gives diminishing returns. Thelonger one stays in the institution the lesseris the possibility of rehabilitation. Throughsocial and economic rehabilitation, peoplecured of leprosy are helped to regain theirdignity. They are helped to find productiveemployment, to contribute to the economyand to find their place in the community.There is a sea of change between these twoconcepts.

Individual and not statisticsTo understand leprosy one must have it;

the next best thing is to live with people whohave it. I lived for an unforgettable numberof years among people who had leprosy.

Leprosy and, in turn, deformity and dis-ability bring about deeper and fundamentalchanges in the character, personality and al-titude of people. These changes remaineven after the people are cured. Life will al-ways be different for them because theyhave been "there." This change goes be-yond the initial reactions of outrage, traumaand self-loathing. It is a change in the in-trinsic human being. It is a change of soul.

In the field of leprosy there is little pre-tence, no sophistication, or concealment.Here we deal with raw human emotionswhich exist on the bedrock of life. There-fore, knowledge of prevalence rates andstatistics is not enough. What is needed is"understanding" not only of the disease buialso of the human face of leprosy.

Present statusThe Director General of the World Health

Organization (WHO) in the recent regionalmeeting in Delhi in 2000 has reported: Atpresent, tive countries of the Region(Bangladesh, Bhutan, Maldives, Sri Lankaand Thailand) have achieved the eliminationtarget of less than 1 case per 10,000 popula-tion at the national levei and hope to achievethis target at the subnational levei in the nextfew years. The leprosy situation in Indone-sia shows a declining trend, and the countryis expected to achieve the elimination targetby the end of 2000. India, Myanniar andNepal hope to achieve the elimination goalat the national levei by 2003.

To sum up:

• Institutionalization gives diminishing re-turns. Longer a person stays, he/she de-velops an institutionalized personality

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69, 2 (Suppl.)^Gol:hu/c: Soc•iul/Econoniic Rehuhi/iíuiion^S43

and chronic dependency. Institution mustbe used only as a last resort.

• Leprosy leading to deformity and disabil-ity brings about not only trauma but achange in the intrinsic human hcing.

• National averages are deceptive. InBangladesh, Thailand. Sri Lanka and 1n-dia there are still districts or pocketswhich are hyperendemic. For example,Banrladesh, which is declared to haveachieved elimination, has stiII 13 districtswhich are hyperendemic. Similarly, Thai-land which is declared as havingachieved the elimination goal still hasseven districts which are hyperendemic.Sri Lanka has three districts. india, whichlias not yet achieved the elimination goal,has only tive states which are hyperen-demic. Therefore, the question is whencan we say that elimination is achieved?Should it be based on national average oron the district levei statistics. What isneeded is a new decentralized strategyfocusing on the pockets of endemicity.

• Averages may be an easy indicator forstatistics. But for the human hcing who isaffected by leprosy, his suffering is 100%and not I upon 10,000. Therefore, whiledemographic projections are importantultimately it is the human face of leprosythat matters.

• Global alliance to be effective must havea very dose collaboration with non-governmental organizations (NGOs) atthe local levei.

To enlist political commitment, WHO,The Nippon Foundation, Novartis and theInternational Federation of Anti-LeprosyAssociations (ILEP) launched the GlobalAlliance for Leprosy Elimination at theThird International Conference heId inAbidjan. lvory Coast. in Novenmber 1999.Providing the last push is fluis criticai tosuccess. This requires further strengtheningof existing partnerships (Sasakawa Memor-ial Health Foundation, Nippon Foundation,ILEP, Novartis, DANIDA, World Bank)anel the active involvement of both nationaland international NGOs.

WHO has estimated that at least a quarterof the total number of leprosy cases in theworld have deformities. Leprosy is a farmore serious problem than the sheer num-ber implies, because disfigurement and dis-

ability lead to dislocation as a result of thesocial stigma.

Multidrug therapy (MDT) involves drugswhich are expensive. However, the treat-ment periods are much shorter compareci tothe clays when dapsone was used, in somecases, for life. Only in yesterday's state-of-the-art lecture on medicine we heard thatperhaps with the new comhination of drugseven one shot will be enough to cure lep-rosy. This is very heartening news.

In recent years great progress also has beenmade in the development of a vaccine againstleprosy, which is currently undergoing fieldtrials in Venezuela, Malawi and India.

To sum up:• Leprosy is an ordinary disease with ex-

traordinary social and economic implica-tions

• Mere numbers do not adequately expressthe social and economic loss

• Killing of M. leprae in the human bodyalone cannot solve the problemDisligurement and displacement. Lep-

rosy primarily affects the serves. The damageis irreversible because the nerve cells do notposses the power of regeneration. This resultsin damage to hands and feet. The deformityconsists of depression of the nose, loss ofeyebrows, sagging of skin, claw hands andulcerated feet. Most leprosy patients admitthat improvement in appearance is as impor-tant as improvement in the function.

The important issue that needs to beclearly analyzed is: The incidence of defor-mity in leprosy is high and facial deformi-ties are more common than those of thehands and feet.

To sum up:• Disability due to leprosy must be treated

as part of a total disability rehabi1itationprogram

• LEP and MLEP must include preventionof disability and social and economic re-habilitation as an integral part

• The percent of dehabilitation is equal tothe degree of disability and intensity ofsocial stigma

• Measurement of the degree of disabilitymust include social/psychological andeconomic factors.

S44^ International Journal of Leproso^ 2001

Situation of disability in developingcountries of Asia. According to the Eco-nomic and Social Commission of Asia andPacific, it is estimated that there are some450 million disabled persons of ali cate-gories in the world today, the vast majorityof whom live in developing countries. It is asad fact that in the developing countries amajority of the disabilities are preventableand are generally related to poverty, dis-ease, malnutrition and ignorance. Most ofthe population in there countries is rural,agriculture based. Insufficient resources formedicai prevention and care coupled withthe lack of political will result in highprevalence diseases, leading to physical im-pairment and disability.

To sum up:• Disability due to leprosy must be treated

as part of a total disability and rehabilita-tion program

• LEP and MLEP must include a preven-tion of disability program and social andeconomic rehabilitation

• Prevention of dehability and socioeco-nomic rehabilitation are neglected evennow. WHO has not done adequate workin the area of rehabilitation of the leprosycured. CBR movement has neglected lep-rosy where it is most required.

Indian scenarioHow much has the profile of the rehabili-

tation including disability due to leprosychanged in the past two decades in India?The new Act on the "Rights of the Dis-abled" does not do justice to those disableddue to leprosy.

The Indian Ministries of Social Welfareand Health implement a number of pro-grams/schemes to provide suitable rehabili-tation services in order to enable ali dis-abled to join the mainstream.

To sum up:• Disability prevention services must form

a part of the health care scheme.• The Primary Health Workers need to be

oriented in the skills of counselling, com-munications and community organiza-tions.

• In ali the programs, the advantagesgiven to leprosy cured are less than 1 %,

which shows the need to integrate lep-rosy work in the general health services.Discard the vertical programs. It had

been the Western model and practice to liftboth the person and the problem out of thesocial context and to attempt to find a solu-tion in a closed institutional setting. Thisprocess was supported by legislation re-stricting the life of the leprosy affected. InJapan, a legal case has been filed by curedpersons who had to undergo inhuman treat-ment during their institutionalization, andthis case of breach of human rights seekingcompensation is attracting world-wide at-tention. Now in India, we have only slowlylearned that a person with disability is basi-cally a human being with equal rights.Therefore, to uproot a disabled person fromhis family is likely to endanger his dignityand destroy his future.

the creation of a separate vertical pro-gram for leprosy is an outcome of socialstigma. Separate development has not onlysegregated the leprosy-affected but also thedoctors and service providers. It may be in-teresting to note that a majority of the coun-tries in which leprosy is declared as elimi-nated did not have a vertical program.Therefore, it is the need of the hour to de-molish the vertical program as soon as pos-sible and to treat leprosy rehabilitation aspart of the overall disability rehabilitation.

To sum up:• National averages are deceptive• It is essential to focus on subregional and

district leveisSome definitionsImpairment = concerned with abnormali-

ties of body structure and appearance andwith organ and system function, resultingfrom any cause. In principie, impairmentsrepresent disturbances at the organ levei.

Disability = reflects the consequences ofimpairments in terras of functional perfor-mance and activity at the levei of the person.

Handicap = concern with the disadvan-tage experienced by the individual as a re-sult of impairments and disabilities; and re-flects interactions with adaptation to the in-dividual's surroundings.

Dehabilitation = means uprooting of anindividual from his natural filial and socio-

69, 2 (Suppl.)^Gokhale: Soriul/Econonric Rehabilitation^ S45

economic environment and leads the personto isolation.

What is rehabilitation

The temi "rehabilitation" refers to aprocess aimed at enabling people with dis-abilities to reach and maintain their optimalphysical, sensory, intellectual, and socialfunctional leveis, lhos providing them withthe tools to chance their lives toward ahigher levei of independence. Rehabilitationmay include measures to restore functionsor compensate for the ioss of a function.

Community-based rehabilitation (CBR)is defined in the ILO-UNESCO-WHO JointPosition Papem as follows: "CommunityBased Rehabilitation is a strategy withincommunity development for the rehabilita-tion, equalization of opportunities and so-cial integrado]] of ali peopie with disabili-ties. CBR is implemented through the com-bined efforts of disabled people themseives,their families and communities, and the ap-propriate health, education, vocacional andsocial services."

Targets set for Asia

The economic and Social Commission ofthe United Nations in April 1992 deciaredthe period of 1993 to 2002 as the Asian andPacific Decade of Disabied Persons. TheAsian Decade of Disabied Persons focuseson the achievement of full participation andequality and has set the following targets:1) Initiation in 1997 of public educationcampaign directed at the prevention of thefive most prevalent preventable cases ofdisability; 2) Achievement by 2002 of amininu ni 50% reduction in the incidenceof three preventable causes of disability: 3)Inclusion by 1996 of persons with disabili-lies, in particular women, as active partici-pants in the formulation of CBR strategiesand in the implementation. and 4) Develop-ment of a national CBR strategy which willinclude traiuing in CBR management so asto provide a framework for action with aspecial focos on rural and sium communi-ties. However, it must be stated that thesegoals have not been achieved.

To sura up:

• "It is unfortunate that work on disabilitydue to leprosy is yet at a very preliminary

stage in most of the Asian countries."• The targets set are not yet achieved.

People with disabilities. An importantobjective of any campaign should be to in-crease public understanding of what dis-ability is and an awareness of the problemsit may bring. Many peopie today equ atedisability with restrictions in physical mo-bi1ity. Disabied persons do not forro a ho-mogeneous group; they have dilïerent prob-lenis that demand different solutions.

The deformities associated with leprosyfurther increase the poverty of the people.People affected by leprosy are often the"poorest of the poor" due to stigmatization,dislocation and displacement, and loss ofhome, land, income and employment.These factors are often in direct proportionto the levei of deformity among people af-fected by leprosy and forni a vicious circleimpossible for the individual alone to breakthrough without societal help.

Organizations of the disabled people.In accordance with General Assembly Res-olution 3447 (XXX), containing the decla-ration on the Rights of Disabled Persons,the United Nations has suggested that orga-nizations of disabled person may be use-fully consulted in ali matters regarding therights of disabled persons.

More than 500 million people in theworld are disabled as a consequence ofmental. physical or sensory impairment.They are entitled to the sane rights andequal opportunities as ali other human be-ings. Too often physical and social barriersin society hamper their participation. Be-cause of chis, millions of the disabled, in-cluding those due to leprosy, in the worldoften face a life that is segregated and de-baseei.

Constraints. Collection of data on the in-cidence and prevalence of disability, espe-cially in leprosy, continues to be a criticaiissue. If disability issues are to get higherpriority with governments for funding andaction, accurate data must be collected anddisseminated. To ensure data comparability,standard terminology in accordance with theinternational classificador of impairment,disability and handicap should be used.

Development of training materiais andprograms of rehabilitation is not readilyavailable.

S46^ International Journal of Leprosy^ 2001

Social and economic rehabilitationSocial and economic rehabilitation is a

unique task. Speaking at the InternationalLeprosy Association (ILA) Conference inBeijing in September 1998, Dr. Arole, Di-rector of the Jamkhed Project in India, iden-tified the principies upon which that re-sponse should be based: "A change of para-digm is needed, recognizing people assubjects, not objects, and workers as en-abling and not providers. Interventionsmust be supportive and responsive, empow-ering rather than diagnostic. They must in-clude addressing the needs and resources ofthe community and extending its capacity."

A rehabilitation agency must recognizethe impact of leprosy on the physical, psy-chological, social and economic life of theindividual. It should be responsive to theconcerns of individuais affected by leprosy.This requires a sensitive approach so as torestore dignity and self-respect; and ensureparticipation and empowerment. The reha-bilitation agency should be aware of theconcerns of the families and communitiesaffected by leprosy who have an importantrole to play in rehabilitation.

To sum up:• Rehabilitation agencies must focus on

training community workers in coun-selling, communications and communityorganizations

• Kits for village workers• People's participation is a must, espe-

cially by women as in Bangladesh andMyanmar

• Involve traditional healers like DhamiZankari in Nepal and Vaidus in Maha-rashtra

• Use cured persons to mobilize the com-munityThe holistic principie. "Holistic" means

an awareness of, and responsiveness to,every aspect of life. It includes activitiesthat address these aspects, and requiresteamwork of different professionals towardprevention of disability, elimination of de-habilitation and achieves social integration.

Special attention has to be given topeople whose self-esteem has been erodedby leprosy, actively involving them in deci-sions about improving their quality of life.

This leads to "empowerment." Empower-ment is an ability of the client to make deci-sions and manage the transactions of every-day life. A community-oriented approachensures that interventions to heal people af-fected by leprosy are acceptable to the com-munity and, therefore, will lead to sustain-ability. Rather than creating special servicesfor people affected by leprosy, one shoulduse existing services through networking.

Stigma and injustice. Stigma may bedue to color, race. disability. disfigurementor political and religious prejudices. Stigmais a social expression on a continuum of so-cial reaction heginning with complete rejec-tion. Stigma is the chief cause of dehabilita-tion or the social and economic dislocationthat people affected by leprosy experience.Overcoming such stigma is an essential steptoward reintegration in society.

The rehabilitation process must concen-trate on overcoming the ignorance and prej-udice that underline stigma. This can bedone by running education campaigns. Ac-tivities may include exhibitions, leafletingdrama, street-plays, posters, films and radioand TV programs. The media has a power-ful role to play in this regard. Simple mes-sages like: "Leprosy is Curable—Ali ItNeeds Is Your Support" "Do not fear it,treat it." This goes a long way to changecommunity attitudes.

Media's needs in leprosy eliminationadvocacy

Editors and print media generally expressconcern about the quality and regularity ofinformation. Most of the material they re-ceive consists either of dull statistics or longspeeches on leprosy. These materiais do nothave any human warmth. What the newspa-pers want are stories with human warmth.They complain that they have rarely re-ceived any iteras of this nature which couldcommande space on the front page.

To regularize the availability and qualityof information on leprosy, in severa! coun-tries the media seem very supportive of theidea to create a data bank on leprosy; amechanism for orientation of communica-tors, and development of a feature serviceon leprosy. This three-pronged activity canbe particularly appropriate for SAARC andWHO to support jointly with ILU, and other

69, 2 (Suppl.)^Gokhale: Social/Econonric RehuhiliI aaion^ S47

NGOs. As South Asian count ies contributeoverwhelmingly to the global incidcnce ofleprosy, it is important for SAARC, whichis a very powerful regional political body,to support the LE campaign in the region.While SAARC has promoted health gener-ally, so far it has done little to aceelerate theantilcprosy drive.

In this context, 1 would likc to appreciatethe efforts niade by BBC/MPM in collabo-ration with the leprosy control program inNepal and their department of con ununi-cations. Similarly, the efforts inade byBBC/MPM to deveio') suitable communica-tion material for print as well as electronicmedia is very much appreciated. ILU andmyself have been connected with these ac-tivities. I would particularly quote my expe-rience in Nepal. where 1 requested the use offolk arts. In Nepal there is a group of peopleknown as "Gayanis." These persons movearound the vil lages every day singing songsof religious significance. We requested theseGiyanis to prepare songs about leprosy and,similarly, we requested some of the creativepersons in the electronic media to lransmitthe massage to the people. I am tempted toquote a story depicted in the documentary.lt's a three minute short fìlm.

In the court of Yama the God of Death, aperson is brought in. Looking at the personthe Yamaraja, the God, says why has hecome itere? He is not yet due to die. The es-cortine person says that he is a leprosy pa-tient and being tired of life he has commit-ted suicide. Yamaraja looks at him very an-grily and asks "Don't you know of MDTtreatmcnt? Now leprosy is curable and notcontagious. It is like any other disease."The person replies, "Sir, it may be verycostly." Yamaraja replies, "1t is free." Theperson asks, "1 may have to travel a longdistance to get it." Yamaraja replies, "It isavailable next door in the nearest primaryhealth center." The person starts arguingand Yamaraja replies with anger, "lf youtalk more 1 will throw you down. You haveno reason to die because of leprosy." There,are similar examples of the, work done inIlidia relating to Samba the son of LordKrishna and many others. These efforts re-ally pave a new way to persuade a commu-nity to change its altitude.

To sum up:

• Information must lead to awareness• Criticai awareness leads to action• To inform, educate, create awareness the

use of print, electronic media and folk artis essencial

• NGOs need to be oriente(' in the skills ofcommunication

• There is no data bank available for me-dia, nor a media sirategy developed bygovernments or NGOs

• Focos more on local newspapers, com-munity television and newspapers in re-gional languages

• Work of BBC/MPM and ILU supports tocreate awareness

Stigma and aborted media efforts

Deep-seated prejudice sometimes marsmedia campaigns. This is evident from thefollowing examples. In The Philippines, apopular actress was invited to appear 00television to talk to a leprosy patient andeducate the community on MDT. She wasagreeable but after rehearsals were done, atthe last minute, her agem objected to herappearance with a leprosy patient, suggest-ing that she risked losing all her future con-tracts. Later it was decided that she shouldappear in a poster displaying the MDT ta-bles with the foliowing slogan: "Leprosy iscurable through MDT which is availablefree of cost in any health center."

The poster was sponsored by pharmaceu-tical company which felt that the mentionof .. leprosy" on the poster might affect itsimage. Therefore the word "leprosy" wasdeleted. Thousancls of posters were thenprinted with the film siar holding a productof tablets and stating, "Communicable dis-cases can be cured fast and MDT is avail-able at every health clinic." The residi washorrendous. The number of women viewersthought that Chis was an advertisement for adrug and wanted to have MDT for beautytrealment.

A TV spot on leprosy was prepared withthe aid of the Health Department inBangladesh. The spot showed a leprosy pa-tient entering a boat to cross the River"Padma." People already sitting in the boatrecognire him as a leprosy patient andrefuse to have hin► in the boat. The boatman

S48^ Iiiternutionul Jorornul o/ Lepro.s.v^ 2001

who knows about leprosy Cries to persuadethe people by informing thcm that leprosyis not contagious and can he cured. Thepassengers are convi nced and the patient isadmitted in the hoat to cross the river. Thefilia fades out on the boat crossing the river.

To sum up:

• Community participation depends on em-powerment

• Empowerment of the people cannot beimported, bought in a market or taught ina classroom—it must come front within

• Participation of people must be at thelevei of policy formulation, planning. im-plementation and sharing the fruits of ac-tion

CBR successful experiments. In ThePhi1ippines, a rehabilitation project (Sa-maria) is run by a home which admits twotypes of persons. One group is the elderly,disabled, destitute cured persons and pa-tients who have nowhere to go and will beliving there permanently, doing whateverlittle work their health can permit. Theother category is 18-35-year-old, cured lep-rosy patients who are to be given vocatìonaltraining so that they can go finto the widercommunity and resettle themselves. Whilethey are in the home, they are also supposedto help look after the other category of dis-abled residente. The director of the home isaware of the risk of chronic dependency, aproduct of institutionalization, but feels thatit can be overcome if people work withfaith and understanding and are given ap-propriate self-empowerment and support.

Nepal provides some instructive experi-ente in lransforming leprosaria. At unesuch institution cured persons are groupedwith the disabled, disfigured, destitute andthose who cannot return to society. For thelast, an ashram or shelter has heen set upwhere they stay permanently and are pro-vided with some monthly food rations and astipend. Medical care is also provided in theashram as are occupational activities forthose who are able to work. Cured persons,along with their families, who can stay in-dependently are provided a small house (aroom, kitchen) and kitchen garden, and aregiven a monthly allowance. They cultivatetheir gardens, and are engaged in beekeep-ing, goat rearing, dairy, etc. These houses

are located in and integrated with the largercommunity. Persons between 18 and 34years aí age are given vocational trainingand encouraged to apply for seed nioney tostart their own business. 'fhus, resettlementapproaches are geared to individual groupsof persons classitied by their rehahilitationneeds and capahility.

Lessons learnedThe partners who have a stake in the

cli aination of leprosy—such as interna-tional agencies like WHO, federal and estafegovernments, community-based organiza-tions and those affected by leprosy—mustnetwork and understand the strengths andweaknesses of each other. During thisprocess, we have learned several lessonsthat helped in redesigning not only the mis-sion but the methodology.

Rehabilitation. Successful rehabilita-tion nuist he a three-way process involvingthe cooperation of the affected person,family and the community, and the socio-medicai rehabilitation fraternity. A con-vincing illustration of this tri lateral collah-orative approach to leprosy elimination andrehabilitation comes from DANLEP, theDANIDA-assisted National Leprosy Eradi-cation Progratn in índia. This approachfocuses on convincing people that leprosy-free communities are a reality, and com-munity action and mobilization can result indesired attitudinal chances. Residentialcamps bring together health providers, pa-tients and members of the community in anunstructured informal contract, aiming tochange community attitudes and behavior.

How to achieve it'? The statc can providethe legal context and technical and financialsupport. The civil societies working in lep-rosy and other developmental fields must beinvolved in developing policy and laws.

Empowerment. Empowerment is a con-cept, political in content and economic inimplication. Empowerment and participa-tion are two inseparable aspects and with-out empowerment of people sustained de-velopment is not possible. It is the peoplethemselves who must make decisions aboutali matters concerning their life. Theyshould participate in: a) prioritizing the ob-jectives; h) planning of actions; c) imple-menting the programs, and d) sharing thefruits of their efforts.

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Very often a misconception exists thatempowerment can be externally bestowedupon any individual or a group. Nothingcan be further from the truth. Empower-ment really germinates from within. It is aninternai process related to the conscious-ness ol rights and responsibilities. Empow-erment must residi in self-efficacy to dis-cover one's capacity and develop the abilityto share power as well as benefits with oth-ers in society. This presupposes awarenessand political competente to make deci-sions, either individually or in coordinationwith others.

Empowerment aims to raise the self-es-teem of clients and to extend their basic lifeskills. It changes altitudes so that clients be-come motivated to change. The key activi-ties for empowerment are increasing theclient's awareness through formal and in-formal education and giving support andencouragement.

"Awareness" is the levei of understand-ing individuais have of themselves, theirsituation and the society in which they live.Increasinã awareness involves developingnew understanding and helping the client torecognize opportunities for change. Criticaiawareness is that which leads to social ac-tion.

Community-based rehabilitation. CBRimplies a well-structured, smoothly func-tioning community that is capable of as-sessing its own needs, of determining itsown priorities, of identifying its own re-sources and of achieving its own goals bycommunity management of personnel andresources. CBR includes rehabilitation ac-tivities carried out within a community.

CBR is a strategy within community de-velopment for the rehabilitation, equaliza-tion of opportunities and social integrationof ali people with disabilities. CBR is im-plemented through the combined efforts ofdisabled people themselves, their familiesand communities, and the appropriatehealth, education, vocacional and specialservices. (CBR for and with people withdisabilities, Joint Position Paper ILO,UNESCO, WHO 1994.)

Gender priority. Another inescapablypolitical dimension is that of gender, whichis fast becoming an important theme world-wide in serious discussions on poverty andinequality. In the case of leprosy, it is a fitei

that pregnancy suppresses the natural im-munity of women to leprosy as well as toothcr diseases and may also precipitateepisodes of reaction. Whether we like it ornot, women suffer even more than menfrom the effects of leprosy, and their plightis compounded by their condition of socialsubstatus and powerlessness. The problemof disabled or disfigured women becomesextremely acute, and they become subjectsof harassment.

Context of poverty. Leprosy is an out-come of underdevelopment and poverty.Eradication of poverty can provide a majorcontext, so we must move beyond the timid-ity that has hitherto kept our focus rooted onsheltered workshops or handicraft centers.

There are too many examples of leprosyhospitais and control programs that have setup schemes to create artificial jobs forpeople affected by leprosy. With the best ofintentions, we ourselves have become a pariof the problem of leprosy by a continuingdependente of people on our institutions-through subsidies, guaranteed jobs, marketsand protection from the real world. It ishigh time that mere charity gives way tomore realistic rehabilitation.

Future of free colonies and "leprosyvillage/islands." Leprosy care has changedfrom the leprosarium to being community-based, but colonies and/or villages 5611 re-main where a sizeable proportion of thepopulation has had leprosy in the past.These free colonies are often near leprosycenters—often the only piaces where treat-ment could be obtained in the past and maybe something of a haven because of re-cluced stigma and rejection. Once these freecolonies got settled, dispersai to "home" ar-cas after completing treatment becomes dif-ficult or even impossible in some cases. ln-stead of considering such villages as totallynegative, it is important to see how we canfacilitate rehabilitation, screening, classify-ing and settling the families on iam]. as inNepal. It is now essential to transform theseinstitutions iuto referral centers.

By educating society about the disease,providing common services to persons af-fected and those not affected by leprosymay be another way to overcome the prob-lem, as in South Korea.

Priority for children. Children broughtup in the shadow of leprosy feel isolated

S50^ Internationcal J0►rrnul nf. Leprn.sy^ 2001

from the outside world. They may have anegative attitude toward society and theirparents. They suffer from loneliness andlack of confidente. AII of this contributes toa sense of dislocation from both society andfamily, often with the effect that the child'seducation is abandoned early. This com-monly affects the children of people af-fected by leprosy also, so that they grow upin an atmosphere of rejection and inferior-ity. Their feelings of alienation and strange-ness may result in antisocial behavior.Sponsorship of children in the shadow ofleprosy is a major and successful experi-ment carried out hy CASP in India and hysimilar agencies in Thailand.

Strengthen the role of family. The fam-ily plays a major role in the life of every hu-man being and has a powerful influente oneach person's image of self and the widercommunity. The disabled child or adult. andespecially une affected by leprosy, may behelped to overcome a whole range of diffi-culties and encouraged to achieve as muchas anyone else.

The most significant problem relates tomarriage, which may be difticult both forthe individual and other family mernbers.This can lead to secrecy, ostracism andeven sending away the person who has hadleprosy. The family as a whole may be dis-advantaged and suffer financially.

The family plays an important role inproviding emotional support and accep-lance. It provides for the basic needs of itsmembers, namely, food, shelter, clothing,love and friendship and, as a consequente,helps to nurture self-respect. Ali of these ac-tivities of the family unit, especially its ca-pacity to act as safety net, may be disruptedby leprosy. The reason seems to lie in thefear and ignorance that surround the disease,often entrenched by a long cultural tradition.The reactions lead to shame, rejection andsecrecy which undermine the physical andemotional support which the family shouldbe providing to each individual member.Therefore, how to strengthen the family tocope with leprosy should be our major con-cern.

Economic independence—key to reha-hilitation. Self-employment is only one ofa number of work opportunities most suit-able for persons with disabifities, includingthose due to leprosy. It is the une that may

suis the largest number of people, especiallypersons affected by leprosy.

In urhan projetis. Chis is done through theestablishment of cooperatives and self-helpgroups in which a revolving credit fund iscreated in combination with a member'ssavings and externai grants. Credit facilitiesfor the disadvantaged and poor need to beaccessible with a n►inimum of formalitiesand red tape, and should be administered atthe grass-root levei by the poor themselves.Credit alone, without promoting saving andmoney management, actually tightens thepoverty trap as people find themselves un-able to repay the loan. Therefore, training incooperation and preparing the leprosy curedfor production, marketing and safes lias tobe promoted. as is done in Korea.

Application of science and technologyto rehahilitation. This is a new area ofwork. and efforts to use technology in thedevelopment of artificial limbs appliancesand aids of daily living are necessary. Theinformation technology has revolutionizedthe concept of media and education. Thiscan be very effectively used in the field ofrehahilitation. Similarly in the social sci-ences, factors that appeared nonquantifiahleare now being measured with the help ofnew research tools. Even the grading of dis-ability is no more based on the physicalability or functionality. The social factors inmeasuring the degree of disability is a newarea which is being developed. The newthrust on research in genetics is anotherarea that is going to affect the field of com-municable diseases.

The new approach.• Support early identilication and volun-

tary referral through a systematic cam-paign

• Raise awareness about the reasons forstigma and its resulting trauma to the vic-tim

• Partner with local, national and interna-tional groups

• Update legislation and vigilant enforce-ment to assure the rights of those affected

• Orient action to preveni disabifities anddehahilitation

• Strengthen the family network• Arrange meetings of people's representa-

tives to build a political will

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Gokhale: Social/Econoniic Rehabilitation^S51

• Develop training modules and kits forfrontline workers

• Undertake and support research evalua-tion and documentation

Before I conclude I would like to congratu-late the young workers in the field of lep-rosy who have presented papers indicatingthe innovative efforts they have made in thefight against leprosy. I would like to con-gratulate all of these young workers. I wasable to attend some sessions on the socialand economic aspects of leprosy, media andtraining, rehabilitation and disability. I feelsome of the papers are so important that the

International Leprosy Union should makean attempt to publish these papers in a bookform because they reflect "the grass-root re-alities in leprosy."

At the last ILA Congress in the U.S.A. atOrlando, I was able to visit Disneyland. It'sa wonderful place. But outside the Disney-land campus there is a board which says:"This work is incomplete and will remainincomplete as long as human imagination isthere."

In the same tune, I would like to say thatleprosy work is incomplete, and will remainincomplete as long as human suffering isthere.