Vocational Rehabilitation

and Social Reintegration

of the

Leprosy Affected in India

Navin Chawla

Vocational Rehabilitation and

Social Reintegration of the

Leprosy Affected in India

Navin Chawla I.A.S.

Preface

During the course of meetings and field visits undertaken for

this study, I was frequently asked by leprologists and social

workers alike how it was that an administrator should have

become interested in so remote a subject. In actual fact my

interest in leprosy arose in 1975. During the course of getting

acquainted with Mother Teresa and her world of destitutes, I

chanced upon the situation of leprosy patients and their families

living in Seemapuri in East Delhi. The opportunity, however, to

make a study of different facets of their situation - the etiology,

the social problems, control measures and rehabil i tat ion

measures - presented itself two years ago, when the Government

of India generously accepted my proposal to devote a period of

time to examine these factors in some detail, and present a

Report. It goes without saying that the conclusions arrived at are

entirely my own.

This paper is intended to share with policy makers several

policy options from the perspective of an administrator. The

leprosy affected are a community stigmatised by tradition.

However, it is not difficult to reverse this trend. I believe that it is;'

necessary for rehabilitation policy to be shaped to complement

the control measure that are al ready being implemented

particularly in the leprosy endemic districts in the country. The

stress is on evolving low-cost community-based methodologies.

With better coordination, the existing infrastructure can be

suitably modified, and hard pressed resources can be applied to

programme content instead of to the creation of administrative

apparatus.

I have used the words "leprosy affected" in most parts of this

Report for several reasons. The use of the word "leper" has

acquired a pejorative meaning and I have eschewed the word

except in some specific references as for example to the Indian

Lepers Act of 1898, the repeal of which I have affirmed. Some

papers and books have relied on the term "leprosy patient" but

with such usage a distinction needs to be drawn between

"patients" and "ex-patients". Persons with deformities are often

taken to be "patients", when in fact they may be non-infectious

and not undergoing treatment at all. Certain books rely on the

word "leprosy afflicted" which, while perfectly acceptable does

sugges t a l i f e - long problem which does not t ake in to

consideration recent medical advances. With the controlled use

of drugs such as Rifampicin, non -infectivity is rendered

sometimes in a matter of a week or two. Nor does this term take

into consideration the plight of family members, who while they

may not themselves suffer from the disease, share its socio-

economic consequences. I have in mind particularly the healthy

children of leprosy patients, especially the residents of Madipur,

who made my access to Seemapuri more meaningful. For all

these reasons, I have preferred to use the words "leprosy affected", as

a summation of a particular socio-economic as well as clinical

condition.

Navin Chawla, I.A.S

4. Jaipur Estate,

Nizamuddin East,

New Delhi-110013.

ACKNOWLEDGEMENTS

The Government of India is unique in permitting its civil servants time off to pursue their academic interests through formal or non-informal prescriptions. This opportunity was presented to me when I returned from an assignment with the International Labour Organisation in Thailand. The nine months of study leave that I availed of enabled me to obtain an Insight into the situation of the leprosy affected. For this unique opportuni ty. I am gra tefu l . I am gra tefu l a l so to the International Labour Organisation, and in particular to its Director-General Mr. Francis Blanchard who supported the project from its inception. I am also appreciative that the International Development Research Centre, New Delhi, provided inputs for research, and made the printing of this text possible.

Returning to a semi-academic structure after a space of many years. I turned to Professor K.D.Gangrade, Head of the Social Work Department, in the Delhi School of Social Work, and Pro- Vice Chancellor of Delhi University, for guidance and assistance. During the course of the last two years he has acted as my Supervisor, and I am indebted to him for his time and patience.

For a student wishing to read further about the rehabili tation aspects of this subject, I soon found that there is no cohesive library. However, thanks to the generosity of a number of leprologists and social scientists, I was assisted with material. Including their own papers.

A special word of thanks is due to Prof. RK. Mutatkar of Pune University and Dr. M. S. Nilakanta Rao, President, National Leprosy Organisation who shared their deep knowledge of the subject whenever I sought them out. Together with Dr. Clive Wing, they also looked over the drafts in its various stages and offered souna advice. My gratitude is also due to Dr. Kunal Saha and Dr. K.N. Rao of the Patel Chest Institute of Delhi University who together with Dr. N.N. Chawla of 'Coordination' Delhi so generously helped with the sample survey. My gratitude is also due to the following who so unhesitatingly provided me

access to research papers, seminar, conferences, projects and

their own rich experiences:

1. Mr. Anees Ahmad, Assistant Director General, ILO, Geneva. 2. Mr. A.G. Chaphekar, Udyog Dham, Talegaon, Maharashtra. 3. Dr. N.S. Dharmashaktu, Dy. Asstt. Director General

(Leprosy), Government of India. 4. Ms. Pushpika Freitas, Rehabilitation Consultant

(North India), German Leprosy Relief Association. 5. Dr. Ernest Fritschi. Director, (Retd.), Schieffelin Leprosy

Research and Training Centre, Karigiri, Tamilnadu. 6. Dr. R. Ganapati. Director, Bombay Leprosy Project. 7. Dr. S.D. Gokhale, Chairman, Gandhi Memorial Leprosy

Foundation, Wardha. 8. Shri Purshottam Goyal, Chairman, Metropolitan Council,

Delhi. 9. Mr. Sunil Guha, Director. ILO Office, New Delhi. 10. Mr. Lakshmi Jain, Industrial Development Services,

New Delhi. 11. Dr. E. Max, Department of Economics, Pondicherry

University. 12. Dr. J.M. Mehta, Hony. President, Pune District Leprosy

Committee. 13. Dr. P.N. Neelan, Director, CLTRI, Chengalpattu, Tamil Nadu. 14. Dr. S.K. Noordeen, Chief Medical Officer (Leprosy), WHO,

Geneva. 15. Prof. T.K. Oomen, Centre for the Study of Social Systems,

Jawahar Lal University, Delhi. 16. Shri Vijay Pande, Director, IDRC, New Delhi. 17. Dr. C.K. Rao, Deputy Director General (Leprosy), Government

of India (Retd.) 18. Dr. M.S. Nilakanta Rao. Specialist in Leprosy - WHO

Consultant. 19. Dr. Patricia L Rosenfield, Special Programme for Research

and Training in Tropical Diseases, WHO, Geneva. 20. Sh. C. Anthony Samy, Director, Worth Trust, Katpadi,

Vellore. 21. Mr. Shankar Narayan, Director, (Retd.) ILO Office, New Delhi. 22. Dr. Lila Soni. 23. Sh. S.P. Tare, Organising Secretary, National Leprosy

Organisation, Wardha. 24. Dr. R.H. Thangaraj, Director of Southern Asia, The Leprosy

Mission (Retd.). 25. Dr. M.V. Yellapurkar, Joint Director of Health Services,

(Maharashtra).

TABLE OF CONTENTS

Page No.

A. Recommendations 1

B. The State of the Art 10

1. Introduction 10

2. History 12 3. Leprosy as a disease 13 4. What leprosy is not 13 5. What leprosy is 14 6. Leprosy control 15 7. Community participation 17 8. Treatment 18 9. Rehabilitation as a factory in leprosy control 21

C. Stigma in Leprosy 23 D. The Global Situation 28 E. The Indian Scenario 41 F. Leprosy and the Law 69

G. The Rehabilitation Factor 75

1. Rehabilitation Policy -- the raison d'etre 75 2. The parameters of the situation 77 3. The prevention of "dehabilitation" 79

(i) Survey, Education and Treatment 81 (ii) Education 82 (iii) Education by demonstration 84 (iv) The attitude of medical community 85 (v) Reconstructive surgery 89

4. The role of institutions in rehabilitation 90

5. The role of the voluntary sector in rehabilitation 92 6. Rehabilitation measure in "free" or self-settled colonies 97

Page No.

7. The role of mass communication 98

8. An assessment of the proposed

rehabilitation strategy 99

H. Training and Placement Services 104

I. Vocational Training and Employment as the

principal means of Rehabilitation 117

A . R e c o m m e n d a t i o n s

These recommendations are specific to or have an important

bearing on rehabilitation aspects.

Employment Policy in the Government Sector

Employment

The 3% reservation for categories C & D of the handicapped

for employment in the Government sector (including the Public

Sector) is not being adequately enforced. The leprosy affected are

not getting their due share of the Reservation Policy on account of

leprosy; some of the leprosy disabled are considered eligible on

account of other effects of leprosy such as blindness or

orthopaedic disability.

1. Leprosy should be treated as a separate category of the

handicapped, and should not be placed under its side effects.

2. All leprosy patients with established signs of nerve

damage or its consequences as specified in the WHO Disability

Grading (Grade I, Grade II and Grade III) should fall under this

category.

3. Those that are having (a) partial or complete blindness

(b) other handicaps apart from the consequences of nerve

damage, e.g. shortening of fingers due to the concentric atrophy of

bones, bone disintegration as sometimes occurs in the ankles etc.

should also come under the category of the handicapped and be

provided suitable jobs.

4. Wherever possible, and in MDT districts in particular,

the leprosy affected especially carrying disability, should be

given certain responsibilities which include the manning of

railway crossings, guard duties, duties of night watchmen and

gardening functions. Certain agricultural jobs e.g. poultry farm-.

ing and animal husbandry may also be considered.

1

Medical Leave

5. For those already employed, the advent of leprosy

should not be considered to be a ground for their suspension,

termination, discharge or dismissal. Medical leave on full pay

should be granted until such time as the clinic/hospital/medical

expert certifies that the patient can rejoin his work without

causing a public health problem. Certification should be made

uniform for the Union Government and State Governments. No

person should be allowed to lose employment on grounds of

leprosy, whether ox not handicapped, whether or not infectious.

This should apply to civilian and military posts alike.

6. Where complications develop, the patient should be

allowed additional leave on full pay upon production of a medical

certificate from clinic/hospital/medical expert for the course of

his treatment.

7. For the leprosy affected seeking employment, while

physical disability may prohibit candidates from performing

certain jobs, physical deformity should not be a ground for non-

consideration.

8. The Special Employment Exchanges should make

efforts to enlarge the number of negative leprosy patients for

registration and placement.

9. Despite Grade II or Grade III disability, the leprosy

affected can perform usefully in a number of occupations i.e. as

railway gangrnen, railway and other gate keepers, and as

gardeners. For these occupations, very rudimentary training is

needed and such placements would go far in the successful

Implementation of a rehabilitation policy.

Incentives for Employment in the Private Sector.

10. Where private enterprise has been enlightened enough to

appoint handicapped persons, they have met with good results.

2

However, it is essential for Government to devise a distinct package of incentives and tax concessions for the private sector.

(a) Government should provide 100 percent tax exemption to employers for the salary they pay to a leprosy employee.

(b) Government should provide 100 percent tax exemption in the event of donations made to enhance the cause of leprosy.

The Role of Employers ' and Trade Union Organisations.

11. The Directorate General of Employment and Training

in the Union Ministry of Labour should convene an annual

tripartite conference to discuss employment policy for the

handicapped, in which the problems faced by the leprosy affebted

should be afforded a distinct identity. The tripartite machinery Is already well developed by the Ministry of Labour.

12. The terms of reference may include devising of trairiing

programmes, drawing up of an employment schedule and

discussing related on-the-job problems for the handicapped

including the leprosy affected. Principal Employers Organisa-

tions and Trade Union Organisations should share in a joint

effort towards an employment strategy for the handicapped.

13. This should act as the nodal Ministry and invite participation at sufficiently senior levels from all concerned Ministries/Departments including the Minist ries/ Departments of Law, Health, Social Welfare Information and Broadcasting and Industry among others. It is only then that a coordinated strategy can be fashioned and difficulties felt by the Employers and Trade Union Organisations be discussed with a view to remedial action.

3

Assistance by Financial Institutions

14. A Finance Corporation should be established to assist all

categories of handicapped persons to obtain financial assistance

towards self-employment schemes.

15. It is difficult for the leprosy affected to obtain bank loans.

They face difficulty in obtaining guarantors. both because of

their depressed economic status as well as societal attitudes. A

recommendation from any recognised voluntary agency working

in the field of leprosy should suffice as bank guarantee. The DRI

scheme or any other scheme for the weaker sections should be

specifically extended to cover the leprosy affected seeking self-

employment.

The Role of Mass Media

16. Stigma affects al l aspects of leprosy control and

rehabilitation. It also sets the leprosy affected apart from other

categories of the handicapped. A significant part of the leprosy

eradication programme lies in the need to educate the population

about the basic facts about the disease, in order that myths and

superstitions be removed. A campaign to remould public

attention needs to be initiated. It needs to be sustained at several

levels. (In the MDT districts in particular, detailed information

needs to be disseminated regarding aspects relating to the

availability of services).

17. Administratively, the Ministries of Information and

Broadcasting, Health, Social Welfare. Labour & Employment and

Industry need to formulate a joint strategy at the apex level.

Strategies need to be devised for State and District levels.

especially in MDT districts.

18. A media mix would need to be devised by experts.

Communication methods and range of coverage have made

s igni f icant advances in the las t few years . Televis ion

transmission now covers practically the whole country.

Acceptability ratios vary. Cinema, radio and the press may have

higher acceptability levels in some areas. Exhibitions and

4

festivals also have a role to play in other areas and during certain

times of the year.

19. It is necessary to associate representatives of the

voluntary agencies in the field of rehabilitation, as well as some

eminent leprologists and social scientists with the development

of a communication strategy at different levels.

Legislation

20. The Indian Lepers Act 1898 has been repealed by the

Central Government and is no longer applicable to centrally

administered areas. However, it has been repealed by only eight

S t a t e Governmen ts . I t s r epea l b y the remain ing S ta t e

Governments should be vigorously urged by the Central

Government, and effected within a time-bound frame.

21. The Law Commission should undertake a compre-

hensive study of Central and State Legislation affecting the

conditions of work and other rights of the leprosy affected.

Wherever discriminatory and outdated enactments exist, these

should be repealed or amended in keeping pace with medical

advancement and the scientific temper of the day. The Law

Commission may also suggest specific legal measures whereby the

working situation of the leprosy affected within the organised

sector can be improved.

22. It would be desirable to provide free legal aid to those

leprosy patients who apply for their legitimate constitutional

rights.

Education and Syllabi

23. Correct factual information about leprosy needs to be

imparted from the primary level uato the undergraduate level.

This may be transmitted both through science lessons as well as

lessons in the humanities. The National Council for Education

5

Research and Training (NCERT) should be associated with

developing an appropriate strategy.

24. The general apathy of the medical profession continues

to remain an impediment on the control side. Government and

private practitioners alike lack clinical confidence in diagnosis

and treatment. The Swaminathan Committee had observed that

"unless medical students are made to learn leprosy as a part of

their curriculum, by including compulsory questions on leprosy

in their examination, inadequate interest in leprosy work among

doctors in service, and general medical practitioners, will

continue". There has not been sufficient improvement in this

direction.

Travel Concessions

25. The leprosy affected who have bilateral Grade II

disability or unilateral Grade III disabilit y should be made

eligible for travel concession similar to those provided to the

orthopaedically or the visually handicapped.

26. The Railways do provide travel concessions to several

categories of the handicapped. These should be enlarged to

include free travel to leprosy patients who need to travel to obtain

treatment. This is especially important for patients undergoing

MDT treatment in districts where MDT has been introduced.

Old Age Pension

27. Leprosy patients with bilateral Grade II disability or

unilateral Grade III disability should be made eligible for old age

pensions, if they are destitute and above the age of 60. Old age

pensions are being provided by the Central Government and some

State Government for certain categories only, but these should be

extended to the leprosy affected categories above.

6

Training Schemes

28. The DGET under the Union Ministry of Labour has

es t ab l i sh e d

Voca t io na l Rehab i l i t a t i on Cen t res fo r t he

Handicapped. The total number of negative leprosy patients

admitted, evaluated and rehabilitated is small, both in absolute

terms and in terms of other categories of the handicapped. This

situation urgently needs to be remedied.

29. Emphasis must shift from sheltered institutions to low-

cost community-based self-employment schemes and domici-

liary rehabilitation schemes. Rural Vocational Rehabilitation

Centres for the Handicapped under the Ministry of Labour as well as

voluntary effort should provide training in self-employment schemes.

30. This should be initiated in all Multi Drug Therapy

(MDT) districts. These programmes should be organised by the

Ministry of Social Welfare in close coordination with the

Ministries of Health, Industry, Information & Broadcasting and

Labour (DGE&T). The programme should minimise expenditure

on infrastructural and administrative costs so that at least 60

percent of funding is made available for programme content. The

programmes must aim to be community-based and low-cost.

Wherever possible it would be of advantage to base them near the

centres where MDT health programmes are being administered.

31. Training modules, especially non-formal training

modules and skill development training programmes, are al -

ready being implemented by the VRCH administered and run by

the D.G.E &T. in the Ministry of Labour. Closer coordination

should be developed between the Ministry of Health's control

programme. DGET'S training programmes and the Ministry of

Social Welfare's rehabilitation programmes, so that a common

strategy be adopted and duplication avoided to the extent

possible. Emphasis whenever possible. should be laid on rural

schemes. The propagation of new methods and techniques in

agriculture and animal husbandry will help enlist greater

7

participation. It should be combined with training in small scale diversified agriculture, the use of appropriate technology and of natural energy (solar, wind power and simple treddle machines.)

32. The 11 Rural Rehabilitation Extension Centres so far

established at Block level, under five selected VRCH, should make

special efforts to include the leprosy affected cases as a special

category of the handicapped. Many of them require prosthetic

and other appliances.

33. Training should not necessarily be geared for the cities.

The high social cost of living in the cities presents it own

difficulties. Agriculture-based training programmes involving

new techniques in the production of food, fruit, vegetables, milk

and poultry as well as small scale diversified agriculture and uses

of appropriate technology would be helpful.

34. The Khadi and Village Industries Commission have

specialised rural-based schemes to encourage self-employment.

These schemes should be devised to suit the particular problems

of the leprosy affected.

35. In the case of cities where there are already large

'free' colonies, usually located near leprosy institutions and

hospitals, existing self-employment schemes, albeit in the voluntary

sector should be strengthened. In many cities their full potential

is not being explored. Mini-VRCH shquld be started near the

biggest urban leprosy centres especially in Bombay,

Calcutta and Madras.

36. In urban areas, a few mini VRCH should be opened near

the principal leprosy settlements with a view to enable the

leprosy affected to avail of evaluation, training and placement

services. The healthy children of the leprosy affected should also

be allowed to avail of such training programmes.

8

37. The 3% reservation for all categories of the handicapped in

the Industrial Training Institute should be strictly enforced. The

leprosy affected are not getting their due share of the

reservation policy on account of leprosy. Non-infectious leprosy

cases should be encouraged to join the training schemes.

38. Training instruments for negative leprosy cases bearing

deformity or suffering anaesthetic limbs should be devised to

ensure that they are within their thresholds of tolerance.

39. A policy needs to be devised for the healthy children of

leprosy patients. They encounter stigma if their parentage or

local address becomes known especial ly at the t ime of

prospective employment or interviews. The 3% reservation in

ITI's and other training institutions should permit any surplus

seats left over (after the needs of the physically handicapped have

been met), to this category of the socially handicapped.

40. Training institutions run both by Government and the

voluntary sector, should not be allowed to covert themselves into

sheltered workshops for a permanent few thereby blocking the

training chances of other aspirants and losing their own raison

d'etre. They should run on business-like lines and, as far as

possible, grow into self-supporting units.

41. Sheltered workshops employing the leprosy affected

should be treated on a different footing from other workshops

falling under the Industrial Disputes Act.

9

B. The State of the Art

1. Introduction:

The rehabilitation of the leprosy-affected can be looked on

both as a formidable problem as well as a formidable challenge.

As a problem its dimensions may seem Insurmountable.

Society with its deep-rooted ignorance and prejudice has

traditionally tended to view leprosy not merely as a disease but as a

sub-human condition. Myths have abounded. Some have

viewed the condition as a manifestation of previous sinful life,

others have believed it to be hereditary and without a cure.

There have been a host of difficulties on the control side as well.

not the least of which has been that the disease has not always

been diagnosed irutime,91-1 properly, nor has it always been

adequately treated. Avoidable deformities, have continued to

occur, fostering prejudice, attracting ostracism and continuing to

cause "dehabilitation". Despite significant advances on the

medical side, traditional prejudices have continued to retain

their grip on common perceptions. The net result is that in some

countries the problem in absolute terms has been increasing

Instead of decreasing.

It is, however, as a challenge that we need to view, the

rehabilitation of the leprosy affected. Several new insights about The

curability of the disease have opened fresh dimensions on how

both the disease and those affected by it should be treated cared for.

In recent years this has led to renewed efforts to cure the

affected, as well as rehabilitate those cured with respect to the

patients' sense of dignity. This attitude alone can temper despair

with hope, and bring about a comprehensive package to eliminate

the manifestations of the disease - physical, psychological and

social - within the foreseeable future

The word "dehabilitation” is etymologically incorrect . Its usage is unique to the leprosy situation and signifies the casting away from society.

10

•

Rehabi l i tat ion means a return to a s tate of complete

normalcy. This definition encompasses the need for social and

psychological assimilation as a necessary complement to

economic independence. There are therefore twin aspects to be

met - the establishment or re-establishment of economic

productivity, and equally important re-assimilation in society.

If only the former is met, the affected is vocationally settled but

not rehabilitated. The WHO has defined leprosy rehabilitation

most succinctly : "By rehabilitation is meant the physical and

mental restoration as far as possible, of all treated leprosy

patients to normal activity, so that they may be able to resume

their place in the home, society and industry. To achieve this,

treatment of the physical disability is obviously necessary but it

must be accompanied by education of the patient, his family and

the public, so that not only can he take his normal place, but

society will also be willing to accept him and assist in his

complete rehabilitation".

The problems of rehabilitation for the leprosy affected go

beyond those of other handicapped categories, chiefly because

such categories as the visually handicapped, orthopaedically

handicapped, the deaf and dumb and other handicapped groups

are neither stigmatised nor uprooted.. They may be considered

'different' from the able-bodied, but they do largely remain

w i t h i n t h e i r ow n en v i r onm ent . Th e l ep r os y a f f ec t ed ,

particularly after the development of deformity, are often

physically uprooted, with consequent psychological impairment.

Damage to hands and feet often enough requires the acquisition

of new skills. Rehabilitation in such cases goes beyond the

traditional ambits and takes on a deeper shade of meaning.

Leprosy rehabilitation as an instrument of policy, i s a

co mp a r a t i v e l y n ew co n cep t , and mu s t n eces sa r i l y b e

multi-dimensional in its framework. A distinction also needs to

be made between rehabilitation effort and rehabilitation policy.

Voluntary effort has indeed been pioneering and has created a

number of pools of excellence. Some extremely interesting and

rewarding experiments are also being carried out. By definition

11

however this can neither be enough or complete. It has now become necessary for Government to play its role in coordinating the manifold spheres involved-medical, social, economic and legislative. These have to be judiciously combined and shaped into an instrument of policy.

This need has become all the more pronounced because Government Is clearly against the "free" colony approach, a consequence of which is the stigmatizing process by society. Society at large does not favour the proliferation of beggars, although it does not realize that in the case of lepros

y it is sometimes the last

psychological barrier of shame that an affected person must cross when he is left with little or no option for survival. Whatever its causes, the phenomena cannot be wished away. The problems of the leprosy beggars need to be comprehensively examined and the parameters of the situation defined. However, it needs to be stated that while the dimensions of the situation are not overwhelmingly large, stigma renders this a difficult area of rehabilitation.

2. History:

Leprosy is a disease which has been with us for many centuries. The oldest Hindu scriptures and the Bible make references to it. Ayurvedic texts of the 6th Century BC had noted the symptoms of leprosy, and Manusmriti took cognizance of leprosy while discussing the regulation of marriage. It is all the more ironic that a disease with its centuries-long association with humankind should be so little understood —indeed misunderstood - in all its aspects including its etiology, causation, means of transmission and its curability. The principal reason for fear is that it is a disabling and disfiguring disease, which had no cure until comparatively recently.

The deformities that change the identity of a patient is the principal cause of social stigma. In every society there prevails an aesthetic concept of physical beauty. Health is indeed an Important aspect of culture, and attempts to change belief and

12

behavior regarding health and disease, therefore seek to change the cultural traditions of people. It is the deformities of the leprosy-affected that have traditionally caused repugnance, and in the absence of any understanding about cause and cure, the leprosy affected were viewed, in a number of societies, as objects of divine punishment and leprosy as a visitation of past sins.* Contagion was the great dread and as traditional medicine offered no cure for leprosy, society's attitude remained, over the centuries, one of outcasting of the leprosy-affected. The disease continues to this day to be the most dreaded of all (with the possible and recent exception of AIDS). In many spheres of life the process of outcasting continues to take place. although on an increasingly diminishing scale as awareness grows that new and powerful drugs can render complete non-infectivity sometimes in as little as one week.

3. Leprosy as a disease:

While leprosy is a disease like any other and requires to be shorn of the body of myth that surrounds it, it must be said that medical opinion does not yet provide unequivocal answers as to its cause or its etiology. Although the bacillus has been known since 1873 when it was identified by Dr. Hansen, its agent has yet to be effectively cultured, and answers are still awaited as to exact mode of transmission. Nor has medical research led to any conclusive vaccine, although field tests are now being carried out In India and elsewhere.

4. What Leprosy is not :

Myths and distortions, however, need to be corrected by comprehensive and sustained effort. There are a number of things that leprosy is not. It is not hereditary, it has nothing to do with impure blood, it is not a poverty-related disease, it does not call for isolation, nor are all leprosy patients infectious. Infection is probably not spread by food and water; indeed it is

R K. Mutatkar " Society and Leprosy".

13

a highly infectious disease. It is neither a difficult disease to diagnose nor is treatment per se difficult, although regularity of treatment is necessary. It does not require to be treated in specialised institutions. All persons are not susceptible to the disease, although insanitary conditions, malnutrition and lack of personal hygiene may "invite" the leprosy bacillus as such conditions might do for a host of other diseases and infections. It is not a fatal disease, but there must be few other diseases that cause its victims as much psychological and social damage.

5. What leprosy is :

Leprosy is a chronic bacterial infection affecting mainly the nerves, skin and mucosa. It is known largely to be a human disease, in that the human body is the principal reservoir of the causative germ the Mycrobacterium leprae. We do not yet have all the answers on the transmission of the disease, but it is known that transmission occurs through close contact between a person who suffers the infectious form of the disease, and who transmits the lepra bacilli through nasal discharge, or skin ulceration to healthy persons. Where the disease is not treated early, adequately or comprehensively, it can lead to primary or secondary deformities. An important factor in its early neglect is the absence of pain, itching and so on.

Manifestations of the disease appear to vary according to geographical variations and host responses. Leprosy does not give any forewarning, but early clinical signs may take the form of oily, shining skin surfaces or one or more faintly discoloured patches on the skin, which become anaesthetic and lose sensation. This removes the protective panoply of discomfort or of pain. It can have an incubation period ranging from 3-5 years or longer. Neglect over a prolonged period may lead to deformity and secondary pyogenic infection causing destruction mainly to hands and feet, loss of eyebrows and depressed noses. Injuries caused to anaesthetic parts invite ulceration; because it is frequently painless, neglect leads to sepsis.

14

There are two main varieties of the disease -lepromatous and non-lepromatous. It is the lepromatous group, which comprises about 15-20% of the leprosy-affected, which causes the spread of infection when left untreated or inadequately treated, Upto 80-85% of all cases are only feebly infectious, and do not generally transmit infection to others. In India the vast majority of the affected, who may often develop deformity, are in fact non-infectious. The majority of leprosy-affected beggars fall within this category. Quite a number of beggars are usually burnt-out cases. The vast majority of the population has sufficient defence mechanisms 2nd does rot develop the disease. To further amplify the point, in a hyper-endemic district of 30/1000. 97% of the population do not contract the disease. Of the 30, 80% i.e. 22.5 patients contract the non-infectious type of leprosy. Therefore, of a population of 1000, 970 do not get the disease and 22.5 contract its non-infectious form. Only 7.5 persons contract the infectious form. The incidence in such an area will be 3 per 1000 i.e. 3 new cases would crop up each year. The chances therefore, of getting the disease would be 3 per 1000, or 0.3%

.. This

would be the pattern in an area where no treatment is given. If, however, all the patients; in the area are systematically treated, the incidence would be further reduced. Should general health and socio-economic conditions improve, the incidence rate could be expected to fall further, consequently reducing the chances of getting the disease.*

Leprosy control :

Prior to the introduction of Dapsone, there was no known t reatment, and isolat ion of the pat ient into asylums. institutions or colonies were the only recourse that society felt it was open to. Isolation after the manifestation of the obvious signs of the disease did not prevent the infectious category of patients from spreading the disease during the early periods of infectivity.

D r . M . S . N i l a ka n t h a R a o — D i s c u s s i o n s

15

Despite the availability of new and powerful drugs. the

problems created by the fact that leprosy is a disease with a long

Incubation period, remain. It has been sometimes known to take a

few years before patients become aware of the manifestations of

the disease and start to take remedial action. Then, as now,

early detection is essential to the success of the control

programme, for on it is dependent timely treatment and cure, the

prevention of transmission of the disease in the family and

community, the prevention of the development of physical

deformity, and, finally, the prevention of "dehabilitation".

Following the introduction of Dapsone, control programmes

took the form of the SET model, comprising house-to-house

surveys for case detection, treatment in out-patient clinics, and

health education. With local variations, control programmes are

based on this model, with varying survey methods being

adopted, using medical and para-medical workers, health

educators and social workers, teachers, social volu nteers,

medical students and so on. There are several at tendant

problems, including the reluctance of people to cooperate with

household surveys, and hesitation to attend leprosy clinics, both

of which methods might single them out for attention and

ostracism. Medical practitioners often enough lack clinical

confidence in dealing with leprosy and instead of being able to

deal with cases in the comparative anonymity of their (often)

general practices, refer suspicious cases to specialised clinics,

which the patient might wish to avoid in the first place.

Whatever may be the nature of difficulties, it is imperative to

widen the scope and intensity of early detection methods. Well-

integrated mass education campaigns using an optimum media

mix are necessary to encourage voluntary reporting. It has been

frequently demonstrated that where such campaigns have been

Intensively launched, especially in control areas of leprosy

hospitals and clinics, an understanding of the disease and its

manifestations is greater, and patients come forward for

16

identification and treatment. It has been suggested earlier* and

needs to be reiterated, that an offer of cash incentives or

Incentives in kind would assist in this effort. Such incentives

would also off-set wage loss and travel expenditure.

Widespread educational campaigns need to precede more

organised population surveys. In some places, these may be

limited in scope. Voluntary agencies working in this field are

constantly involved in this effort. Many of them have well

defined control areas, and undertake surveys of specialised

groups as school children, factory workers. slum dwellers

etc. Such surveys are preceded by educational campaigns where

publ ici ty materials (hand -outs , posters , f i lms etc. ) are

distributed. The general experience of such campaigns is that

they are followed by a spurt of voluntary reporting. However, in

endemic districts particularly, there can be no substitute for

house-to house surveys of the entire population. This needs to be

done by leprosy or general health workers, properly t rained to

detect the earliest clinical manifestations. Such exercises also

need to be preceded by comprehensive educational campaigns, in

order to assuage abnormal fears, and to help bring the facts about

the nature of the disease out of the closet.

Community Participation :

This is where community participation also comes in. It is

vital to the success of an anti -leprosy programme that the

community at large accepts the disease like any other disease.

and its patient as any other chronic patient. The irony lies that

given deep-rooted traditional fears, such an attitude will have to

be taught. Health education is now being undertaken in India on a

much more systematic and sustained basis that in previous

years. However, changes in behaviour patterns do take time. The task

is uphill but it must be attempted. Programmes need to be

shaped in accordance with cultural variations, using local

languages, and a media mil: found most acceptable to local and

* Report of the Working Group on the Eradication of Leprosy- Ministry of Health and Family Welfare, Government of India. (1982)

17

regional populations. The use of religious sentiment can be an

important factor and should be taken into consideration. It is

also necessary to involve communi ty elements - youth

organisations, student organisations, organisations of teachers

as well as formal and informal community leaders. It has not

been sufficiently recognised that social scientists need to play

(what can amount to) a very significant role in community

understanding. For leprosy extends beyond being simply a

medical problem. It encompasses important social and cultural

issues, which are closely interwoven in the matrix of community

life.

It is not enough to encourage a few sociological studies. What

requires to be done is to encourage social scientists to integrate

their understanding with control mechanisms, and to tackle the

problem of leprosy as an integrated whole. Indeed, in its final

analysis, social scientists might convincingly argue that the very

word "leper" which has come to acquire a pejorative meaning,

should be discarded in favour of the term 'leprosy patient', and

indeed that the word "leprosy" itself be replaced by a less pointed

and more neuro-dermatological definition.

Treatment :

The scientific and technological advances in the fields of

leprosy treatment during the last three decades have resulted in a

major change in outlook towards the disease.

Treatment for several decades was dependent on a single drug-

Dapsone. In the last few years new and more powerful drugs such as

Rifamipicin, Clofazimine and others, which have powerful

bactericidal action against the leprosy bacillus are now available for

application in chemotherapy, as a measure of leprosy

control. These drugs, now often used in varying

combinations with Dapsone, are faster acting. This has helped

both to reduce the period of infectivity and has also dramatically•

brought down the length of treatment. Additionally, they have

provided a much needed answer to a major problem that was

18

developing with Dapsone chemotherapy, that of dapsone resistance in a percentage of cases. There is no doubt that these are now powerful weapons in the leprosy control programme.

The administration of the multi -drug treatment or regimen(MDT) is not without its difficulties. It is much more expensive than single drug therapy (Dapsone) and it also requires to be administered under close medical supervision throughout. This in turn has necessitated the need for adequate numbers of medical and para-medical personnel, as well as adequate training and retaining facilities. An important factor is the availability of the drugs in sufficient quantities, either by means of indigenous production or by import.

Wherever MDT has been launched a number of issues relating to regimen, supervision, regularity and continuity have to be worked out in advance. Regimens are worked out on the basis of age and whether cases are paucibacillary (those that have very few number of bacilli), which require a prescribed regimen for about six to nine months, or multibacillary (having large number of bacilli in their bodies), which prescribed regimen extends to an average of two years. Treatment must be supervised throughout and continuity and regularity need to be maintained. On the part of the control staff, it also means the careful monitoring of the effect of treatment and toxicity of the drug regimens by regular clinical and laboratory investigation as well as the requirement of maintaining proper records of cases.

Irregular treatment is a major problem in leprosy control. A contributory factor lies in the length of the disease as well as the length of the treatment involved, necessitating patience and regularity. Ironically and sadly, many patients become regular only after nerve damage or deformity has occurred. Prior to the Introduction of MDT, or in those areas where Dapsone monotherapy is still continuing, absenteeism in Nepal has been reported to range from 45% in some districts to 75% in others. In Sri Lanka, the average absenteeism rate is about 50%.

19

There is at present no alternative to early and regular

treatment. Research is however, being carried out in a number of

areas to see whether the action of the drugs presently in use

cannot be prolonged or their frequency of administration

reduced. Answers are also required on how to make the best use of

the available chemotherapy involving new combinations of

available drugs. The search must go on for newer and more

powerful agents. Advances in the medical sciences lends hope to

speedier and more efficacious control mechanisms.

The Special Programme for Research in Tropical Diseases

under the World Health Organisation (WHO) has been engaged in

developing a vaccine based on the lepra bacilli. This vaccine is

presently undergoing field trials in various countries. A pro-

posal to start field trials of this vaccine in India is presently

under consideration. Indian scientists have also been working

for several years on the development of vaccines, having

Immunological similarity with Mecrobacterium laprae. Field

tests are presently been undertaken in Maharashtra. These are

likely to take about five years before the efficacy of the vaccine,

which has had fairly positive results in a limited controlled

context, can be assessed. The Talwar vaccine has had success in

the t reatment of lepromatous cases of pronounced skin

condition, but is not in its true sense a prophylactic. The

vaccine developed by the Indian Cancer Research Centre is likely

to soon start field trials. However, the prognosis regarding these

developments and field tests must remain guarded, for it

remains to be seen whether they might actually help the

leprometous type of patients is developing immunity. Not all

vaccines that have been developed have shared equal success.

The Polio vaccine is a case in point. Whereas the vaccine against

Smallpox was invented in 1796 the eradication of Smallpox has

only recently become a reality. Nevertheless, the prophylaxis of

leprosy through a vaccine should in every way be encouraged, as

its success would spell an important advance in the quest to

control the disease.

20

Rehabilitation as a factor in leprosy control :

The need for rehabilitation of the leprosy affected cannot be

taken as an end product in an assembly-line approach involving

different components such as community survey, community

education, public health measures and treatment. To present an

everyday example, a beggar bearing leprosy deformity is almost

automatically taken to be suffering from the disease: the fact that

he may no longer be a carrier of the Mycrobacterium laprae and

that deformity arose out of earlier neglect, is not often realised.

In the eyes of the average person he remains a "leper". Leprosy is

therefore one disease where the need of rehabilitation

sometimes begins at the stage of diagnosis and treatment, and

requires to be continued unt il such time as the affected is

vocationally settled (or re-settled), and socially accepted in the

community to which he belongs. More than for any other

disease, the leprosy eradication programme requires an

integrated approach, involving both the medical control aspects

as well as 'inputs to counter problems of sociological displace-

ment and possible psychological impairment.

Everyone is agreed that there can be no substitute for early

detection and treatment. If leprosy were diagnosed early and

treated adequately, deformity would be prevented and leprosy

would soon divest itself from the whole body of misapprehension

that has inculcated itself into the religious, cultural and

sociological matrix of society. Sadly, however, leprosy is not

always diagnosed early and transmission and disabili ties

continue to occur.

It therefore becomes essential for the leprosy control

mechanism to step in at a sufficiently early stage in order to

prevent initial impairment and early disability from becoming a

major handicap leading to "dehabilitation" and its possible

consequences.

The control strategy must aim not merely at prevention as a

part of treatment, involving as this does public health and

21

specialised educational campaigns, but physical and vocational

r eh ab i l i t a t i on s chem es as w e l l . Th i s cou ld fo r es t a l l

"dehabilitation" avoiding not only individual tragedy, but also a

potential problem for the State.

The essence of a viable rehabilitation policy is not only that it

should be integrated into the leprosy control policy, but that it

should aim to be community-based and low cost. It is now

widely realized that the institution-based approach is neither

economical, nor indeed is it possible to isolate the numbers

involved behind walls of one kind or another. Nor is this

approach desirable, because it only perpetrates stigma instead of

dismantling it. For rehabilitation to be possible on the scale

required in many countries, it must be inexpensive and its

ad m i n i s t r a t i o n s h o u l d b e t i m e l y e n o u gh t o p r e v e n t

displacement, within the parameters of limited resources, it is

necessary to integrate measures of leprosy rehabilitation with

community education, public health, and treatment.

22

C. Stigma in Leprosy

Goffman describes a stigmatized person as one with a “spoiled identity'. Stigma in its dictionary meaning is variously a stain, taint or defect, a sign of moral blemish, a reproach caused by dishonorable conduct or as in an earlier age, a mark caused by a branding iron, as in aspects of slavery or criminality. Stigma takes on differing degrees of intensity which vary from and within societies and situations. Stigma is attributed to physical and social characteristics as well as aberrations in character. Deformity is the obvious physical characteristic. Character infirmities include deviant behaviour, imprisonment and frequent unemployment cycles. Sociologically, stigma is principally associated with race, colour, religion and, in India, caste as well. Stigma however recognizes hierarchy. The physically handicapped in general are less stigmatized than, say, the mentally ill. Physical disability caused by war or a similar patriotic function is usually quite acceptable. Social strata affects acceptability. A mentally ill or physically handicapped person is more acceptable if the person belongs to the upper classes or is wealthy. There is however, a sharp distinction between the leprosy-handicapped and other handicapped

persons.* While most handicapped persons are viewed as some what less than normal, they remain within their own milieu, homes, vocations and envoirnment. The leprosy- affected, on the other hand, have traditionally been ostracised to the extent of being excommunicated by society.

That stigma should have been attached to leprosy from early times because neither causation nor cure were known till a hundred years ago can perhaps be understood; that stigma still persists in many countries, and community understanding and cooperation is far from satisfactory is a matter of deep concern. Community attitudes vary in different countries, and indeed even in different regions in the same country. In some areas the occurrence of the earliest skin patches starts the cycle of fear,

* S. D. Gokhale " Social Aspects of Rehabilitation of leprosy Affected persons"

23

concealment, neglect and deformity; in others where there may

have been educational campaigns or easier availability of

treatment and cure, there may be a greater degree of tolerance

even to deformity. Paradoxical as it may seem, it is generally

accepted that attitudes and behaviour of the blue and white-

collared educated urban dwellers, is more stigmatizing than is

evident in rural areas.*

Leprosy therefore continues to be considered the most

stigmatised disease of all, barring the recent Acquired Immune

Deficiency Syndrome (AIDS). It was because it was viewed as

divine retribution that Missionary activity applied itself to the

"upliftment" of the leprosy-affected. Again, every society has its

concept of aesthetics, beauty and form. Into none of these could

leprosy ever fit, " its victim altering with the advancement of

the disease from normality into deformity. For much the same

reasoning there was much less stigma attached to tuberculosis or

smallpox. People did fear tuberculosis but there was little

stigma, because there was a long-term cure, and there were no

outward manifestations of the disease. Smallpox in India was

dreaded, but viewed as a visitation of the Mother Goddess, a

disease which was either fatal or cured within a specific time

limit. Although it left its mark behind, it was not viewed by

traditional societies in India as a progression the object of which

needed to be distanced. In the case of leprosy, however, stigma

was and cont inues to be perpetuated by ignorance and

misapprehension, that assumes contagion or infectibili ty,

whereas in most cases there is none. Even the literate equates

deformity with infectivity.

The common urban perception of leprosy are beggars on the

streets bearing deformity or ulceration in the hands and feet,

often without eyebrows and with depressed noses. Ironically such

• Dr. M.V. Yellapurkar, Deputy Director, Health Services (Leprosy), Govt. of Maharashtra - 'The Leprosy Control Programme in Maharashtra in Relation to Rehabilitation". Vocational Rehabilitation of Leprosy Patients. Report on the 1LO/DANIDA Asian Regional Seminar, Geneva, 1982.

R.K. Mutatkar, "Society and Leprosy." Chapter 1.

24

cases are most often not infectious, the infectious cases being relatively harder to identify.

Self-perception is quite identical to society's general perception, and follows from it. When a person discovers that he (or she) has contracted leprosy, lie begins to view himself as he viewed the leprosy affected in general, that is with some degree of dread or contempt. Upon discovery of the disease, his aspirations record a change. A defensive mechanism often develops in order to protect his immediate family from the humiliation of public discovery. There may be a daughter to marry, or a son to settle, a myriad of human accommodations yet incomplete. Too often to recount, he hides the disease until its outward manifestations became obvious, by which time conventional treatment cannot disguise deformity. Severe psychological damage, personality changes and deviancy often result. The logical end in such cases, happily less frequent now, was to leave home and as far as possible from known environs, to spare loved ones the "shame", or to protect oneself from the humiliation of being outcasted by family, friends, neighbours and the community.

An important difference between the stigma attached to

leprosy and that attached to caste or colour, is that in the case of the latter, the incumbent is attached to his respective group at birth.

* Moreover, his physical and emotional needs continue to be

fulfilled within his own social grouping. The incumbent continues to play the familiar roles of father, mother, child or sibling. The person's occupation or role in the family community or society remains undisturbed. He continues to derive a level of fulfillment from whatever job or task was being fulfilled. But in t h e ca s e o f l ep ro s y t h e re i s a m a r k ed ch an ge , f r om a comparatively higher status in to which he was born, to a situation sans status. It can sometimes be a dramatic social death, which applies equally to the work situation and, often pitilessly, to the domestic situation. Ironic as it may seem, even practitioners of medicine are sometimes reticent to accord him

• R.K. Mutatkar `The Leprosy Affected and their problems"

25

the status of a patient, which is given to persons suffering from more "acceptable" diseases.

There is a body of opinion that believes that the medical profession continues, by and large, to remain aloof from the medical problem. In terms of sheet numbers , medical practitioners working in the field are far outnumbered by para-medical and social workers. Doctors continue to display a lack of clinical confidence.' and body of knowledge about the disease. Several practitioners are unwilling to handle leprosy patients, sometimes for fear that this may not be tolerated by the bulk of their cl ientele. This too is st igma, and has the effect of strengthening society's misapprehensions, instead of the reverse. Conversely, fear of identification causes patients to shy away from specialised leprosy clinics and hospitals. Nor do they always welcome being contacted at home by leprosy technicians or workers. With stigma being so deeply ingrained, a view has been taken that it is self-defeating to maintain special leprosy clinics and hospitals. Some social scientists and leprologists advocate change in terminology used, such as "leprosy hospitals". leprosy projects, or even the word "leprologist". and would wish to see the National Leprosy Eradication Programme integrated with general health services.

Legislation too, in more countries than one continues to support stigma. Legislation concerning leprosy had its basic assumptions in the beliefs of incurability and infectivity. In many countries such legislation was enacted in the 19th century and sought to enforce compulsory segregation. In India, too, the Leprosy Act of 1898 reflected the social perceptions of the time, and was based on the premise that leprosy was incurable and that all cases were infectious. This Act and the Railway Act of 1890 as well as other legislation, affected a number of areas of segregation including the use of transport, presence of the leprosy affected in public places, as well as in the personal sphere affecting marriage, divorce, and inheritance. The Leprosy Act of 18.

c.‘.8 has since been repealsed by the Govt. of India in all Union

RK. Mulatkar-"Society and Lcprosy"

26

Territories. Eight State Governments have also repealed it. but it

continues to remain on the statute book in most States. Although

i t would appear that i t s provisions are no longer being

implemented vigourously, its presence on the statute book is

reflective of the casual attitude adopted towards the situation by

society at large.

27

D. The Global Si tuation

It must be stated at the outset that there are no accurate

statistics available. It is also difficult to compile global estimates

when the quality of data varies considerably from and within

regions. Enumeration of cases in some regions is less complete

than in others and registered cases represent only a proportion of

total estimated cases. The WHO's current global estimate is

between 10-12 million estimated cases. 10 million is an estimate

that may be considered conservative by many, who arc more

likely to place the figure nearer to 20 million.

There is a major difference between registered and estimated

cases. The WHO believes that only about 50% of the total

estimated cases are ever registered. Registered figures in

themselves have to be carefully considered. Patients rendered

inactive may continue to be retained on registers for a variety of

reasons. There are problems of duplicate registration in some

places. Not all registered persons take their treatment with

requisite regularity. It is true that wherever the multi -drug

regimen has been introduced, it has become necessary to keep

more scrupulous records, but this regimen has yet to be

comprehens ively in t roduced in many count r ies . Whi le

information on registered cases is by definition much more

reliable, it does not particularly help us to arrive at an accurate

compilation of total estimated cases.

The figures of registered cases are therefore only a part of the

total scenario. Equally important is the prevalence rate, which

demonstrates the intensity of the disease in the total population. A

prevalence rate of 1 case per 1000 persons is considered to be a

serious public health problem. It is estimated by the WHO that

approximately 1.6 billion people live in areas where prevalence

is over 1 case per 1000. Such areas constitute serious public

health problems, and the populat ions in these areas are

considered to be at risk.*

* Dr. S. K. Noordeen and L. Lopez Bravo 'The World Leprosy Situation".

28

Table 1 complied by the WHO presents a distribution of

registered cses, prevalence rates and the proportion of cases WHO-

region wise for upto 1985. Table 1 needs to be read in conjuction

with Table 4 because the WHO Regions are quite distinct from the

normal definition of geographical regions. According to this

estimate, South East Asia contributes the largest share of

registered cases (69.6%), with Africa at second place (18.4%),

followed by America including South America (5.7%). the

Western Pacific which includes Australia and several Asian

countries (4.6%), the Eastern Mediterranean Region including

Egypt, the Arab World and Afghanistan (1.4%), and Europe

including Morocco and Turkey (0.3%)

Keeping in view the WHO definition of Regions, Table 2 shows

the number of registered cases for 1966, 1976 and 1985. The

bracketted figures indicate the number of countries from which

the figures have been compiled, making strict comparisons

difficult. However, Table 2 does demonstrate that the South-

East Asia Region has contributed the preponderant number of

cases, with a sharp upward swing from 1,748,468 (for eight

countries) in 1976 to 3,737,159 (for nine countries) in 1985.

Equally significant Africa has shown a downward swing from

1.398,220 (for 38 countries) in 1976 to 987.607 (for 43 countries) in

1985.

Table 3 renders comparison somewhat easier in that it

presents the number of registered cases in 92 countries over the

same period. The African region has shown a decline of 23.9%

from 1966 to 1976 and again a decline of 28.2% from 1976, to

1985. These figures may be questioned as to their accuracy; for

instance it is not certain whether they might represent a certain

proportion of reduced case finding, but nevertheless the figures

are accepted to represent a declining trend. The South-East Asia

region however has shown a corresponding increase of 117.2%

and 113.3%. respectively. The single largest contribution to the

figures of the South East Asia region is from India. with a

registered leprosy population of 3.2 million, and an estimate

variously placed above 4 million.

29

Some countries have, however, achieved complete coverage.

and in these prevalence has declined. These include Australia.

Japan, Malaysia, the Philippines, the Republic of Korea, Sri

Lanka and Thailand, as well as several smaller countries such as

the Pacific Island countries of Fiji, Gaum, Solomon Islands,

Tonga and Vanuatu as well as Hongkong and Singapore. The

situation in several other Asian countries however continues to

generate concern. In Bangladesh there are 35,802 registered cases In

a population of 96.7 million. Only 22% of the total estimated

cases have so far been registered. The treatment default rate is

estimated to be as high as 40%. Burma with a population of 37.6

million has about 253.000 registered cases, of which about

87.6% are under regular treatment. In China the registered

number of cases is stated to be 1,00,000, in a total population of

1000 million. These figures are stated to have been identified

through mass screening surveys and care is largely organization or

institution-based. Indonesia has 127,870 registered cases in a population of 161.6 million.

Nepal with a population of 15 million has almost 35,000

cases with a prevalence rate ranging in different zones from 3.2 to

8.7 per 1000. Sri Lanka with a population of 15 million has

10,520 registered cases with an overall prevalence of .67/1000.

Malaysia with a population of 13 million has approx. 7500

registered cases, and the leprosy control programme is well

integrated with the general health services. Thailand represents

another success story in this field as indeed it does in other areas

such as family planning and general health services. In 1963

there were an estimated 1,40,000 number of cases with an

overall prevalence of 5/1000 of population. Since then the

country has developed a very well-organised structure and

programme involving government, voluntary and International

effort. Today Thailand has come down to 46,000 registered cases

in a population of 50 million. Prevalence in the whole country

has been below 1/1000 since 1976 and was 0.9/100G in 1979.

According to an evaluation survey made by WHO over a ten. year

interval in the Khonkaen province, prevalence fell from a high

of 12.37/1000 in 1962, by as much 70% over the next ten years.

30

Thailand as well as a number of these countries have effectively

integrated the leprosy control effort into their general health

services.

The American region has shown an increase in the periods

reviewed in Tables 2 and 3. This is largely due to increases in

Brazil . There has also been an increase in prevalence of

registered cases in the Eastern Mediterranean region, but

country-wise prevalence is below 1 per 1000 of the population and

therefore does not constitute a risk. There is virtually no

prevalence in Western Europe. North America and New Zealand.

31

TABLE I

TABLE 1. DISTRIBUTION OF REGISTERED LEPROSY CASES BY WHO REGION, 1985

Registered cases

WHO Region Population latest official estimate (000)

Number Prevalence rate

per 1000 Proportion of cases to the total

(%)

Africa 421782 987607 2.34 18.4

Americas 654958 305999 0.47 5.7

South-East Asia 1130605 3737157 3.31 69.6

Europe 633838 16794 0.03 0.3

Eastern Mediterranean 290277 74802 0.26 1.4

Western Pacific 1359562 245753 0.18 4.6

Total 4491022 5368202 120 100.0

Or for the most recent year for which data are available

Population data from World Health Statistics Annual 1985.

32

TABLE 2

REPORTED REGISTERED LEPROSY CASES BY WHO REGION FOR THE YEARS 1966, 1976 AND 1985

WHO Region

Number of registered cases (Number of countries)

1966 1976 1985

Africa 1685526 (38) 1398220 (38) 987607 (43)

Americas 177813 (47) 241248 (40) 305999 (41)

South-East Asia 790851(6) 1748468(8) 3737157 (9)

Europe 19589 (20) 20452 (20) 16794 (10)

Eastern Mediterranean 40963 (10) 63236 (20) 74892 (21)

Western Pacific 117003 (30) 128325 (22) 245753 (27)

Total 2831745 (151) 3599949 (148) 5368202 (151)

• Or the most recent year for which data are available.

33

TABLE 3.

REGISTERED 'LEPROSY PATIENTS IN 92 COUNTRIES IN 1966, 1976 AND

1985, BY WHO REGION

Number of Number of Percentage Number of Percentage registered cases registered cases (or decrease) registered cases (or decrease)

WHO Region (Number of countries) 1966 1976 1985

Africa (26) 1460962 1111714 -23.9 798148 -28.2

Americas (34) 176514 238901 35.3 303607 27.1

South-East-Asia (5) 790851 1717415 117.2 3662657 113.3

Europe (8) 9377 13113 39.8 14463 10.3

Eastern Mediterranean (4) 885 3546 300.7 5350 50.9

Western Pacific (5) 79279 104829 32.2 101438 -.

-3.2

Total (92)

2517868

3189518

26.7

4885663

532

34

TABLE 4

REGISTERED LEPROSY CASES IN THE WORLD, BY WHO REGION

Countries or areas

AFRICA

Population estimate

(000)*

Number

Number of registered eases

Prevalence Year rate per 1000

Algeria 20500 ….

……

….…..

…. Angola 8540 300160 1975 3.51. Benin 3825 21469 1981 5.61 Botswana 1051 198 1982 0.19 Burkina Faso 6582 33478 1981 5.09

Burundi 4537 4828 1981 1.06 Cameroon 9432 23738 1985 2.52

Cape Verde 296 781 1979 2,64 Central African Rep;ublic 2442 8350 1983 3,42 Chad 4901 13113 1983 2.68 Comoros 421 1308 1979 3.11 Congo 1695 9920 1985 5.85 Cotc d' Ivoire 9300 49051 1984 5.27 Equatorial Gunca 300 ... Ethiopia 33680 70809- 1984- 2.10 Gabon 1146 3885 1984 3.39 Gambia 696 2414 1981 3.47 Ghana 12700 15331 1981 1.21 Guinea 5301 48557 1979 9.16 Guinea Bissau 810 2879 19891 3.55 Kenya 19536 8301 1981 0.42

Lesotho

35

Countries or areas

Population estimate

(000). Number Year

Prevalence rate per 1000

Liberia 2109 4202 1979 1.99

Madagascar 9400 35930 1979 3.82 Malawi 6839 17925 1981 2.62 Mali 7719 81657 1982 10.58 Mauritania 1832 699 1981 0.38 Mauritius 1011 E6 1981 0.07 Mozambique 12615 12829 1979 1.02 Namibia 1507 ... Niger 5686 16205 1982 2.8.5 Nigeria 92037 281601 1982 3.06 Reunion 532 227 1983 0.43 Rwanda 5757 1400 1983 0.24 Sao Tome & Principe 94 20 1981 0.21 Senegal 6316 15728 1981 2.49 Seychelles 53 1979 0.82 Sierra Leone 3600 12915 1979 3.59 South Africa 31586 16030 1975 0.51

Swaziland Togo

605 2747

123 11573

1980 1982

0.20 4.21

Uganda

15150 15309 1981 1.01 United Republic of Tanzania 21062 35097 1983 1.67 Zaire 30261 56648 1982 1.87 Zambia 6242 16642 1982 2.67 Zimbabwe 7980 5892 1979 0.74

Total 421782 987607

2.34

AMERICAS

Anguilla 9 5 1984 0.56 Antigua and Barbuda 79 47 1984 0.59 Argentina 29627 12506 1984 0.42

Bahamas 231 41 1984 0.18

36

Population

Prevalence

estimate rate per 1000 Countries or areas (000). Number Year

Barbados 252 33 1984 0.13

Belize 156 … … … Bermuda 56 1 1984 0.02 Bolivia 6082 1834 1983 0.30 Brazil 129660 206081 1983 1.59 Canada 25150 186 1983 0.01

Cayman Islands Chile

19 11780 10 1984 0.00

Colombia 28776 20737 1983 0.72

Costa Rica Cube

2467 10059

642 57 16

1984 1984

0.26 0.57

Dominica 77 19 1984 0.25

Dominican Republic Ecuador

El Salvador

6416 9257 4999

5132 22 12

184

19 84 1984

19 84

0.80 0.24

0.04

French Guiana 73 255 1984 3.49

Grenada Guadeloupe

112 332

281 115

1984 1983

0.25 3.47

Guatemala 7740 422 1983 0.05 Guyana 4 793 243 1984 0.31

Haiti Honduras

453185 72

948 103

1984 1984

0.18 0.02

Jamaica 2 190 802 1984 0.37

Martinique Mexico

327 78524

1804 16448

19 83 1984

5.52 0.21

Montserrat 12 4 1984 0.33 Netherlands Antilles 250 Nicaragua 3058 142 1964 0.05 Panama 2134 145 19 84 0.07 Paraguay 3278 4963 1984 1.51 Peru 29698 33 59 1980 0.17 Saint Christopher and Nevis 45 14 1984 0.31

Saint Lucia 134 217 1984 1.62

37

Population

Prevalence

estimate rate per 1000 Countries or areas (000)* Number Year Saint Vincent & the Grenadines Saint-Vincent-et-Grenadines 124 48 1984 0.39 Suriname 364 2311 1982 6.35 Trinidad & Tobago 1149 141 1983 0.12 Turks & Caicos Islands _ 7 18 1984 2.57 United States of America 2 36681 4330 1982 0.0 Uruguay 2990 688 1984 0.23 Venezuela 16851 12032 1984 0.71 Virgin Islands (British) 12 ... ... ...

Virgin Islands (USA) 104

Total 654958 305099 0.47

SOUTH -EAST ASIA

Bangladesh 96730 35802 1982 0.37 Bhutan 1388 2365 1985 1.70

Burma 37614 253285 1985 6.73 Democratic Peoples Republic of Korea 19630 0 1985 0.00

India 730540 3225302 1985 4.41 Indonesia 161632 127870 1985 0.79 Maldives 180 1183 1985 6.57 Mongolia 1866 0 1985 0.00 Ncpi1 15023 35150 1985 2.34 Sri Lanka 15606 10520 1985 0.67 Thailand 50396 45680 1985 0.91

Total 1130605 3737157 331

EUROPE

France 54947 Germany, Federal Republic of 61089 53 1975 0.00 Israel 4244 242 1979 0.06 Italy 57024 540 1980 0.01

Malta 360 195 1983 0.54

38

Countries or areas

Population estimate

(000). Number Year

Prevalence rate per 1000

Morocco 20420 3485 1981 0.17 Netherlands 14443 600 1978 0.04 Portugal 10164 2278 1983 0.22 Spain 38228 5109 1982 0.13 Turkey 48265 3967 1980 0.08 United Kingdom 49654 325 1984 0.01 USSR 275000 ... ...

Total 633838 16794 0.03

EASTERN MEDITERRANEAN

Afghanistan 17672 1346 1985 0.08 13ahrain 400 41 1985 0.10 Cyprus 657 156 1984 0.24 Democratic Yemen 2225 205 1980 0.09 Djibouti 3330 69 1975 0.21 Ekrpt 45915 23736 1984 0.52 Iran (Islamic Republic of)

. 43414 11192 1985 0.26 Iraq 14110 500 1980 0.04

Jordan 2779 0 1985 0.00 Kuwait 1695 0 1985 0.00 Lebanon 2644 45 1984 0.02 Libyan Arab Jamahiriya - 3637 644 1975 0.18 Oman 1181 275 1980 0.23 Pakistan 93286 21533 1981 0.23 Qatar 257 Saudi Arabia 10824 1670 1985 0.15 Somalia 5423 3056 1985 0.56 Sudan 20564 8790 1982 0.43 Syrian Arab Republic 9934 124 1985 0.01 Tur,loia 6886 153 1978 0.02 United Arab Emirates 1206 29 1984 0.02 Yemen 5238 1331 1983 0.25

Total 299277 74892

0.26

39

Population

Prevalence

estimate rate per 1000 Countries or areas (000). Number Year

WESTERN PACIFIC

American Samoa 34 73 1983 2.06 Australia 15544 2661 1982 0.17 Brunei Darussakun 214 China 1036040 100066 1983 0.10 Cook Islands 17 26 1982 1.53 Democratic Kampuchea - 7149 FIJI 686 375 1984 0.6.6 French Polynesia 167 298 1980 1.78 Gaum. 116 26 1982 0.22 Hong Kong 5579 1638 1983 0.29 Japan 120018 8944 1983 0.07 Kiribati 62 118 1983 1.90 Lao People's Democratic Republic 3585 2988 1984 0.83 Macao 343 % 1984 0.28

Malaysia 13393 7443 1983 0.56 Nauru 7 40 1981 5.71 New Caledonia 147 487 1983 3.31 New Zealand 3300 52 1975 0.02 Pacific Islands (Trust Territory) - 142 1469 1984 10.35 Papua New Guinea 3190 8851 1983 2.77 Philippines 53351 37397 1983 0.70 Republic of Korea 40578 27148 1984 0.67 Samoa 159 137 1984 0.86 Singapore 2544 7882 1983 3.10 Solomon Islands 221 7C0 1982 3.17 Tonga 99 23 1982 0.23 Tuvalu 7 10 1983 1.43 Vanuatu 128 258 1981 2.02 Viet Nam 52742 36616 1983 0.69

Total 1359562 245753

0.18

40

E. The Indian Scenario

Leprosy continues to remain a major health problem in

India. With 3.16 million cases on record in March, 1988, and an

estimated total slightly above 4 million, India accounts for

nearly a thi rd of the world 's leprosy cases. The avera ge

prevalence rate is estimated to be 5.72 per thousand, though in

some States prevalence is well above the national average.

Present estimates also indicate that nearly 1/4 to 1/5 of cases are

infectious and that 15 to 20 per cent suffer from disabilities such

as anaesthesia, noticeable deformity of hands/feet, ulceration,

depressed noses, blindness, or a combination of these. Sadly 20 -

25% of all cases occur in children below 14 years of age.*

National level data is, however, not available with regard to the

proportion of crippled patients, or those having correctable

deformities or those needing vocational rehabilitation. Studies

are needed to collect this information.

There was a very sizeable increase in case detection during the

Sixth Plan period accounting for 41. 5 per cent of the total case

detection thus far (21.44 lakhs out of 51.70 lakhs).**

While this

is unmistakably an indicator used for the assessment of

performance in case detection, it also indicates that in certain

States the inherent problem is perhaps of a dimension not fully

accounted for. There are marked inter-State variations ; the

district-wise data collected for 1984-85 indicates that 201

districts had a high endemic prevalence rate of 5 and above per

thousand. According to 1987 figures, 201 out of 430 districts in

the country continue to have disease endemicity of 5 and more

per 1000 of population. The number of cases on record in June,

1987 was 3,301,969 ; the number of cases under treatment and

discharged in June, 1987 were 3,043. 705 and 2,474,967

respectively. (Table 14). The 1981 census placed 58% of the

country's population (400 million) at risk. In March 1988 an

estimated 2.7 million were undergoing treatment.

* Leprosy - Status Report 1985-86 - Leprosy Division, DGHS (p.3) ** Ibid (p.42)

41

Until a few decades ago, there was a surprisingly remarkable coincidence in the approach to the problem of the leprosy- affected adopted both by society at large and by Government. The attitude was at best one of benign neglect. The disease was treated largely as a social problem, and the affected were outcast socially and physically. Some institutions, asylums and leprosoriums, were started mainly by voluntary effort where a few thousand patients were interned. Leprosy colonies mushroomed in urban outskirts and elsewhere as an answer to society's requirement that the leprosy affected live without being seen.

The advent of Christian missionary effort in the 19th century brought the first reasonably organised efforts as well as a humane attitude to leprosy work. This coincided with the discovery in 1874 by Hansen of the leprosy bacillus as the causative organism. At about this point hydnocarpus oil became the first specific form of treatment of the disease. Segregation however continued to remain the main method of control. The first known asylum in India appears to have been established in Calcutta in the early 19th Century. However, there is evidence that Raja Kali Sankar from Bengal established a Leper Asylum in Benares in 1810, which he later handed over to the Church to administer.

It was not until the introduction in the mid 1940's of sulphones as method of control that it became possible to think of effective domiciliary-based treatment. For as the size and dimension of the problem became known, it had become clear that large scale segregation was not even feasible. The reservoir of leprosy in the country was enormous, and segregation of such a large affected population was not possible either in terms of its infrastructural dimensions, or its financial implications or. Indeed, even in terms of the human resources that such a policy would entail. There would be social problems as well, and instead of encouraging the affected to remain within the community, the reverse would result. Meanwhile patients would have a tendency to hide the disease for as long as they were able.

42

Side by side with the early Christian missionary effort, pioneering work was also undertaken by several other voluntary bodies, not least among which was the innovative work of the Gandhi Memorial Leprosy Foundation (GMLF) at Wardha in developing the early SET model. This later came to be adopted by Government, and eventually led to the introduction of organised leprosy control in the national health programme. The start of organised leprosy work, however, began with the establishment of the Indian Council of the British Empire Leprosy Relief Association in 1925 (renamed the Hindu Kusht Nivaran Sangh in 1947). In 1941 the Government of India appointed a Committee w h i ch r ev i ew ed t h e ex t en t o f t h e p r o b l em an d m ad e recommendations. In the 1940's the GMLF experimented and refined the method that has come to be known by its different stages - Survey, Education and Treatment ( S E T ) of the population at large in endemic areas. In 1954. the Government's Expert Committee adopted this model and developed it into the National Control Programme (NLCP). Immediately prior to this, emphasis was placed on treatment, and the work was largely in the voluntary sector. A total of 152 institutions provided 142.6 beds per 10,000 estimated cases. The Statewise distribution was uneven. Equally uneven was outpatient clinical care. 1203 clinics in the country provided a ratio of an average of 1 clinic per 300,000 population. The First Plan (1951 -56) covered a cumulative population of 20 lakhs

. detected 17,000 cases and its

total allocation of expenditure was Rs. 35 lakhs. The NLCP coincided with the Second Plan (1956-61) and while it did not see a very high figure in terms of cumulative cases detected (1,12,000), the cumulative population sought to have been covered was appreciably higher at 1,47,000 and expenditure allocated had dramatically increased to 529 lakhs, all of which was provided by the Central Government. The Plan documents of 1951, 1956, 1961 and 1969-74 focussed on inputs to be provided in rural areas with high and moderate endemicity. In its earlier years, the programme suffered from several constraints, not the least amongst which were non-availability of potent drugs as well as the high degree of social stigma that came to be encountered. It

* 1 lakh represents 100,000

43

was only from the Fifth Plan period that the programme gained

sharper focus. Expenditure in the Fifth Plan (1974-79) was 2023

lakhs compared to 286 lakhs during the the Fourth Plan (1969-

74) and Rs. 63 lakhs each year during the Annual Plans (1966-69).

In 1976 the programme was made performance-oriented; each

Stale was given targets for case detection, treatment and

discharge after treatment and cure. More systematic effort was

emphasized for survey and case detection, registration of cases,

domiciliary sulphone treatment and community education. An

Important assumption made was that this was a disease of rural

incidence and urban prevalence. It was during the Fifth Plan

that the programme was extended to urban areas as well.

By the end of the Fourth Plan (1969-74) only one third of the

endemic population had been covered. During the Fifth Plan

(1974-79) coverage had increased to three fourths of the endemic

population. It had taken over a decade to iron out a number of bottle-

necks not the least of which were the need for several infrastructural

and financial arrangements. These factors made possible a

significantly high rate of increase in case detection during the

Sixth Plan Period (1980-85). Equally important was the factor of

treatment. By 31st March 1985, of the 3.24 million cases on

record, 3.02 million (or 93.2%) had been brought under treatment.

Since 1955, a total number of 1.93 million cases had been

discharged due to cure or death.

Upto 1968-69 the NLCP was a Centrally aided programme,

and i t was developed, managed and f inanced b y S ta t e

Governments, with assistance from the Central government.

From 1969-70 however i t became a Centrally sponsored

programme and total expenditure was charged to the Union

Government, with implementation by the States according to the

guidelines laid down by the Centre. During the Fifth Plan

expenditure was sought to be shared. The Sixth Plan reverted to

the programme being entirely Centrally aided. The Sixth Plan

r e f l e c t e d G o v e r n m e n t ' s r e n e w e d d e t e r m i n a t i o n t o

eliminate leprosy. The programme had been renamed the

44

National Leprosy Eradication Programme (NLEP) and allocation

of f inancia l r esources doubled to Rs . 4120 l akhs . The

infrastructural base was enlarged to create additional posts for

450 full-time doctors and 3200 additional field staff. There was a

significant increase of several related physical factors.

In 1982. a working group was set up by the Government under the

Chairmanship of Dr. M.S. Swaminathan with a number of

eminent leprologists. distinguished public health experts and

social scientists and scien tists to formulate a strategy to

eradicate leprosy by the end of the century. The Committee would

take into account the "great advances in the chemotherapy of

leprosy, the extended reach of the mass media, the promise of

recent medical research and other relevant factors". The terms of

reference were wide ranging and included the control aspects (the

chemotherapy to include the indigenous production of anti -

leprosy drugs and its delivery system). the sociological, legal and

rehabilitation dimensions, the role of the voluntary sector and

medical education.

This landmark report was submitted to Government in

February 1982. Its recommendations were for the most part

immediately accepted, and culminated in a policy statement

calling for the eradication of leprosy in India by the year 2000

AD. The NLCP was renamed the National Leprosy Eradication

Programme, and was declared time bound and target oriented.

The desire to see an end to leprosy came to be reflected in the

Twenty Point Programme.

The winds of change began to reflect themselves in other

related spheres. The Indian Leprosy Act of 1898, long an eyesore

on the Statute Book, was repealed by the Union Government in its

application to the Union Territories with effect from January.

1984. Repeal was urged on the State Governments.' A National

The Act has so far been repealed by the State Governments of Arunachal Pradesh, Kerala, Madhya Pradesh, Maharashtra, Mizoram, Orissa, Tamil Nadu and Tripura. It Is not applicable to Rajasthan and Sikkim. It is likely to be repealed by Karnataka and Uttar Pradesh soon.

45

Leprosy Eradication Commission was set up under the

Chairmanship of the Union Health Minister for Programme

Policy guidance, and a National Leprosy Eradication Board was

set up under the Chairmanship of the Union Health Secretary, for

monitoring the activities of the Programme. This consequently

necessitated the strengthening of the organisational structure

from its foundation upwards.

A far reaching recommendation of the Swaminathan

Committee was the need to speedily undertake a massive country

wide campaign to supplement dapsone monotherapy with bact-

ericidal drugs. and to establish the pre-requisites for such a

campaign in the form of population surveys, recruitment and

training of essential staff, health education and other necessary

infrastructural arrangements. A programme of combined

therapeutic regimen was launched in 1982 with SIDA assistance

and introduced in 12 highly endemic districts covering a total

population of 37.0 million. The number of districts placed under

coverage has since grown. While it is proposed to gradually cover all

201 districts having endemicity of 5 and more per 1000, by

March, 1988, 48 endemic districts covering a population of 100

million with an estimated leprosy case load of 1.34 million are

under coverage (see Table 15).

The efficacy of MDT has become clear. In 7 of the 12 districts an

intensive phase of five years was completed in July, 1987 on a total

population of 171.32 lakhs bearing a case load of 3.25 lakhs. The

prevalence rate in these seven highly endemic districts has reflected a

percentage decline of as much as 78%.

46

S.. District Prevalence Rate

No. before MDT

Prevalence Rate

in July, 1987 Percentage

Decline

1. Wardha 11.1 1.8 83.8

2. Purulia 19.2 7.7 60.0 3. Srikakulam 18.0 2.6 85.6 4. Ganjim 13.8 2.4 82.6 5. Viziangaram 13.6 2.4 82.4 6. North Arcot 18.1 4.3 77.8

7. Baroda 5.2 1.4 77.0

Maintenance activities to complete treatment, as well as detection

and treatment of new cases will continue for another five years,

when it is likely that the leprosy control activities in these

districts will be integrated with the basic health services during

the closing years of maintenance. The progress made in these and

other endemic districts may be seen in Table 16.

Until the point of integration is reached, the NLEP operates as a

vertical programme. One SET Centre with one para medical worker

for 25,000 population and one Leprosy Control Centre for every 4.5

lakh population would cover rural areas. In urban areas the ratio of an

LCC is to every 50,000 population besides hospitalization facilities.

In areas of endemicity below 5 per 1000, one SET Centre has been

established within the framework of the primary health care

infrastructure.

By December, 1987 the country wide Infrastructure had grown to 601

Leprosy Control Units, 919 Urban Leprosy Centres, 7000 SET

Centres. 215 District Leprosy Units and 294 Temporary

Hospitalisation Wards. 3.30 million leprosy cases were detected and

recorded; of these 3.04 million were brought under treatment. A total

of 2.47 million cases had either been discharged as cured or had

migrated or had died since the inception of the programme (see Table

14). Skilled manpower includes 2200 medical officers and 20.000

para medical staff

47

under the NLEP besides an additional 1100 trained medical and

3410 paramedical staff in the voluntary sector.

The role of the voluntary organisations in rehabilitation has

been treated in Chapter G. In statistical terms, there are

presently about 100 voluntary organisations actively engaged in

leprosy relief services. They are together estimated to provide

SET services to a population of 59 million spread over areas

with wide variation in the prevalence rate (1 to 32 per thousand).

of a total of 8.5 lakhs cases on their records. 7 lakhs had been

b r o u gh t u n d e r r e g u l a r t r e a t m en t .* M o s t o f t h em a r e

multifunctional. 82 are providing SET activities. 70 provide

curative as well as rehabilitation services. 14 are additionally

engaged in the organisation of training courses for medical

personnel, and some also provide referral courses.

Rehabil i tat ion service have hitherto been largely the

preserve of the voluntary agencies, which have developed along

different lines. Many of them have developed extremely

Interesting and useful models. The Swaminathan Committee, in

its list of recommendations, noted that it was essential for

rehabilitation to become an integral part of leprosy control.

Towards this end it suggested that coordinated efforts by the

Ministries or Departments of Health, Education and Social

Welfare, as well as by voluntary organisations was necessary.

with the Ministry of Health and Family Welfare as the nodal

point. A beginning is now proposed to be made. In the seven

MDT districts that have completed the intensive phase, it is

proposed to establish one Rehabilitation Centre each to provide

corrective surgery and vocational training to 3000 cured leprosy

patients with Grade-II (and above) deformity. It is proposed to

mix them with other non-leprosy handicapped. It is broadly

envisaged that the training programme should not have a very

long span. This may be about six months. During the training

period, each trainee would receive a stipend as well as food. The

vocational trainiiig courses would be developed to assist in re-

* Figures current for June. 1987. Ministry of Health and Family Welfare, Government of India.

48

integration at the community level. In order to provide for re-constructive surgery wherever it is needed, a local institution providing such facilities would be identified and used for referral services. There are presently 75 surgical units functioning under the NLEP. The number of leprosy rehabilitation units are only 11 and there are 45 training centres for medical personnel.

The emergence of several highly effective bactericidal drugs coincided with firmer political commitment, and gave a fillip to leprosy control. This was strengthened by the call given by the then Prime Minister Shrimati Indira Gandhi to Indian scientists to develop an eradication strategy. Indeed, it is widely acknowledged by the small and fraternal community engaged in leprosy control and rehabilitation services in India, that Shr imat i Ind i ra Gandhi had genuine s ympath y fo r disadvantaged groups in general, and the plight of the leprosy affected amongst them. Indeed it was her understanding of the helplessness of the lives of the leprosy affected that led her to confer her patronage to leprosy institutions the country over.

49

TABLE 5

Prevalence of Leprosy in India

Year Population

(millions) Estimated

No. of leprosy patients ( ,000)

'

Prevalence

rate (per 1000 popu- lation)

1871 198.291 108.8i 0.55 1881 216.679 128.09 0.59 1891 274.334 126.24 0.46 1901 294.361 97.36 0.33 1911 315.156 109.09 0.35 1921 318.942 102.51 0.32 1931 324.753 159.80 0.49 1951 360.958 1,374.01 3.81 1961 439.118 2,561.60 5.83 1971 547.958 3,200.90 5.84 1981 685.185 3,919.337 5.72

For data prior to 1971 Mohammad Ali. P. (1963) Facts and Figures about leprosy in India. Leprosy In India, 35, 10-26

• Table 5 to 12 are from Leprosy Status Report 1985-86, DOHS, Ministry of Health and Family Welfare, New Delhi.

50

Source :

TABLE 6

Distribution of Prevalence Rates of Leprosy by States/UTs

Prevalence rate States and UTs

1951 1961 1971 1981

Less than 1 (very low) 1 6 7 6

1-4 (low) 6 4 8 14 5-9 (moderate) 3 5 8 6 10-20 (high) 1 3 3 3 20-over (very high) 0 2 3 2

Total

11

20*

29*

31*

*for others data not available

1. Government of India, Ministry of Health (1955) Report of the Committee for Control of Leprosy. Government of India Press, Calcutta.

51

TABLE 7

Endemicity and Prevalence Rates of Leprosy in India - Statewise

S. N0.

State/ U.T. Estimated case load (lakhs)**

1951 1961 1971 1981

1 2 3 4 5 6

1. Andhra Pradesh 1.90 (4.84) 5.41 (14.44) 6.28 (14.43) 6.20 (11.58)

2. Assam 0.40 (4.4) 0.10 (0.84) 0.12 (0.81) 0.15 (0.75) 3. Bihar 1.23 (3.0) 2.80 (6.02) 3.39 (6.02) 3.80 (5.44) 4. Gujarat - 0.10 (0.48) 0.13 (0.48) 1.00 (2.93) 5. Haryana - - 0.01 (0.09) 0.01 (0.08) 6. Himachal Pradesh 0.07 (7.8) 0.06 (4.41) 0.15 (4.33) 0.07 (1.64)

7. Jammu & Kashmir - 0.04 (1.12) 0.05 (1.08) 0.05 (0.83)

8. Karnataka - 1.40 (5.93) 1.74 (5.93) 2.22 (5.98) 9. Kerala - 0.07 (0.41) 0.75 (3.51) 0.75 (2.95) 10. Madhya Pradesh 0.85 (3.0) 0.25 (0.77) 0.32 (0.76) 1.20 (2.30) 11. Maharashtra 1.04 (3.3) 2.20 (5.9) 2.80 (5.9) 4.00 (6.37) 12. Manipur - 0.02 (2.6) 0.06 (5.60) 0.08 (5.63) 13. Meghalaya - 0.06 (5.93) 0.06 (4.55) 14. Nagaland - - 0.17 (32.69) 0.05 (6.49) 15. Orissa 0.81 (7.50) 1.90 (10.82) 2.37 (10.80) 3.20 (12.14) 16. Punjab 0.01 (0.11) 0.03 (0.14) 0.02 (0.14) 0.20 (1.19) 17. Rajasthan - - 0.10 (0.38) 0.10 (0.29) 18. Sikkim - - - 0.025 (7.81)

19. Tamil Nadu 3.08 (8.4) 6.62 (8.99) 7.841 (19.00) 7.33 (15.14)

TABLE 7 (CONTD) Endemicity and Prevalence Rates of Leprosy in India - 8tatewise

S. No.

State/U.T. Estimated case load (lakhs)**

1951 1961

1971 1981

1 2 3 4 5 6

20. Tripura 0.02 (1.75) 0.10 (6.41) 0.10 (4.88)

21. U.P. 0.80 (1.4) 1.40 (1.89) 1.68 (1.90) 4.10 (3.70) 22. West Bengal 3.55 (b14.1)

(14.1

)

3.01 (8.01) 3.60 (8.12) 4.30 (7.88)

23. A & N Islands 0.003 (2.50) 0.01 (5.26) 24. Arunachal Pradesh 0.01 (2.12) 0.01 (1.59) 25. Chandigarh N.A. 26. D & N Haveli 0.001 (1.43) 0.001 (1.00)

27. Delhi 0.005 (0.12) 0.01 (0.16) 28. Goa, Daman & Diu O.04 (6.34) 0.05 (5.81) 0.05 (4.59) 29. Lakshadweep 0.01 (25.0) 30. Mizoram 0.01 (3.03) 0.01 (2.04) 31. Pondicherry 0.15 (40.54) 0.19 (40.42) 0.10 (31.67)

TOTAL

13.74 (3.81) 25.62 (5.83) 32.01 (5.84) 39.19 (5.72)

**Figures in brackets are rates per 1000 population.

Source: Mohammad Ali, P. (1963)., Loc. cit., Government of India, Ministry of Health and Family

Planning, DGHS, Leprosy Cell.

TABLE 8

No. of districts by leprosy prevalence rates by State/UT

S.

No.

State/UT 10+ 5 to 9.9 <5 Total

1. Andhra Pradesh 15 8 0 23

2. Assam 0 1 15 16 3. Bihar 11 11 9 31 4. Gujarat 0 6 13 19 5. Haryana 0 0 12 12 6. Himachal Pradesh 0 0 12 12 7. J & K 0 0 5

r 0

8. Karnataka 2 6 11 19 9. Kerala 2 8 4 14

10. Madhya Pradesh 1 16 28 45 11. Maharashtra 7 12 11 30 12. Manipur 0 3 5 8 13. Meghalaya 0 0 5 5 14. Nagaland 1 1 5 7 15. Orissa 8 5 0 13 16. Punjab 0 0 12 12 17. Rajasthan 0 0 25 25 18. Sikkim 0 4 0 4 19. Tamil Nadu 12 3 0 15 20. Tripura 0 2 1 3 21. Uttar Pradesh 6 24 26 56 22. West Bengal 7 9 0 16

1. A & N Islands 0 0 2 2

2. Arunachal Pradesh 0 3 4 7 3. Chandigarh 0 0 1 1 4. D & N Haveli 0 0 1 1 5. Delhi 0 0 1 1 6. Goa. Daman & Diu 0 3 0 3 7. Mizoram 0 0 3 3 8. Lakshadweep 1 0 0 1 9. Pondicherry 3 0 0 3

76 125 211 412

54

TABLE 9

List of Hyper Endemic Districts Statewise in India-1985

S. Name of state/ Name of districts Name of districts No. UT with prevalence with prevalence

rate 10/1000 rate 5 to 9.9/1000 and above

1 2 3 4

1. Andhra 1. Srikakulam 1. Adilabad

Pradesh 2. Vizianagaram 2. Hyderabad 3. Visakhapatnam 3. Kliammam 4. East Godavari 4. Krishna 5. West Godavari 5. Mahboob Nagar 6. Nellore 6. Nizamabad 7. Chittoor 7. Pralcasam 8. Karim Nagar 8. Rangarcddy 9. Warangal 10. Nalgonda 11. Medak 12. Kurnool 13. Anantapur 14. Guntur 15. Cuddapah

1.

2.

Karbi Anglong

Assam

3. Bihar 1. Patna 1. Gaya

2. Nawadah 2. Aurangabad 3. Pumea 3. Giridih 4. Siwan 4. Bhagalpur 5. Sitamarhi 5. Mongher 6. Darbhanga 6. Begusarai 7. Madhubani 7. Gopalganj 8. Katihar 8. Dumka (Santhal P) 9. Muzaffarpur 9. Nalanda 10. Rohtas 10. Hazaribagh 11. Singhbhum 11. West Champaran

55

S. Name of state/ Name of districts Name of districts No. UT with prevalence with prevalence

rate 10/1000 rate 5 to 9.9/ 1000 and above

1 2 3 4

4. Gujarat 1. Valsad

2. Surat 3. Dangs 4. Bharoch 5. Vadoclara 6. Panch Mahals

5. Karnataka 1. Raichur 1. Bellary

2. Bidar 2. Gulbarga 3. Mysore 4. Bijapur 5. Dharwar 6. Belgaum

6. Kerala 1. Kasargode 1. Trivandram

2. Palghat 2. Alleppey 3. Trichur 4. Malappuram 5. Kozhilcode 6. Cannanore 7. Quilon 8. Ernakulam

7. Madhya 1. Raigarh 1. Raipur

Pradesh 2. Rewa 3. Datia 4. Bilaspur 5. Barwani 6. Durg 7. Dhar 8. Bastar 9. Chhatarpur 10. Rajnandgaon 11. Gwalior 12. Ratlam 13. Chhindwara

56

Name of districts with prevalence rate 10/1000 and above

Name of districts with prevalence rate 5 to 9.9/ 1 000

1 2 3 4

14. Bhind

15. Khandwa (E.Nimar) 16. Shandol

8. Maharashtra '1. Greater Bombay 1. Thane

2. Wardha 2. Raigad 3. Latur 3. Satara 4. Gadchiroli 4. Sholapur 5. Nanded 5. Parbh ant 6. Osmanabad 6. Beed 7. Chandrapur 7. Akola 8. Arnravati 9. YeoUnal 10. Nagpur 11. Bhandara 12. Buldhana

9. Manipur 1. Bishanpur

2. Tamenglong 3. Tenganoupal

10. Nagaland 1 .

Mon 1. Tuensang

11. Orissa 1. Ganjam 1 . Keonjhar

2. Balasore 2. Koraput 3. Cu ttack 3. Kalahandi 4. Dhenlcanal 4 . Phulbani 5. Puri 5. Sundargarh 6. Mayurbhanj 7. Sambalpur 8. Balangir 12. Sikkim 1. East District 2. South District 3. North District 4. West District

57

S. Name of state/

No. UT

S. Name of state/ Name of districts Name of districts No. UT with prevalence with prevalence

rate 10/1000 rate 5 to 9.9/1000 and above

1 2 3 4

13. Tamil Nadu 1. Chingleput 1. Coimbatore

2. North Arcot 2. Tirunelveli 3. South Arcot 3. Kanyakurnari 4. Salem 5. Dharmapuri 6. Madurai 7. Tanj avur 8. Tiruch irapalli 9. Ramanathapu ram 10. Puddukotai 11. Periyar 12. Madras. 14. Tripura 1. North Tripura 2. South Tripura 15. Uttar 1. Hardoi 1. Rampur Pradesh 2. Pilibhit 2. Uttar Kashi 3. Sitapur 3. Azamgarh 4. Tehri 4. Basti 5. Faizabad 5. Badaun 6. Kanpur 6. Banda 7. Ballia 8. Barabank1 9. Bahraich 10. Bareilly 11. Etawa 12. Fatehpur 13. Ghazipur 14. Gonda 15. Gorakhpur 16. Hameerpur 17. Jalaun 18. Varanasi 19. Deoria 20. Rai Barelly 21. Shajahanpur

58

S. Name of state/ Name of districts Name of districts N o . J r with prevalence with prevalence

rate 10/1000 rate 5 to 9.9/ / 000 and above

1 2 3 4

22. 23. 24.

Unnao

Mirzapur

Lucknow

1 6 . West Bengal 1. Purulia 1. Howrah

2. Bankura 2. Hoogly 3. Midnapur 3. Malda 4. Birbhum 4. Coach Bihar 5. Burdwan 5. Murshidabad 6. Jalpaiguri 6. Nadia 7. West Dinajpur 7. 24 Praganas s. Darjeeling

9. Calcutta

17. Arunachal 1. Siang West

Pradesh 2. Tirap 3. Siang East

18. Goa, Daman 1. Goa

& Diu 2. Daman 3. Diu

19. Lakshadweep 1. Lakshadweep

20. Pondicherry 1. Pondicherry

2. Yenam

3. Karaikal

59

F . Leprosy and the Law

There are three pertinent observations that need to be made

,concerning the enactments affecting the leprosy afflicted in

various statute books across the country: —

(1) such legislation was devised at a time when there was no

known cure for leprosy and reflected concern for the welfare

of the 'healthy' majority. The assumption was that leprosy

was incurable, and that all affected persons spread the

disease.

(ii) with the medical advances made over the last three

decades, such enactments have lost their raison d'etre, and

(iii) until such times as these enactments are not repealed,

the movement for equal rights for the leprosy affected will

not come of age. Special legislation concerning the leprosy

affected will always put them into a category apart. These

observations are amplified briefly, in order not to be

repetitive.

Leprosy has been recognised over the centuries as an

affliction without cure, a disease which permitted the practice of

ostracism even within the parameters of the nuclea r and

extended families. In order to protect 'healthy' individuals and

the community, persons were separated, willingly or otherwise.

Ostracism was practised either in part or in whole. Relationships

were curtailed. The leprosy affected lost their right to participate in

social and religious functions, often immediately upon

recognition of the disease. The emotional divide was often in the

nature of the act of a guillotine. The cultural beliefs regarding the

disease coincided with the medical beliefs of the 18th and 19th

centuries, when there was no known scientific cure for leprosy.

Isolation was the only remedy that scientific opinion could

endorse as a means of protecting the interests of the 'healthy'

mass from those individuals unfortunate enough to have crossed

the line into a world subjected to the myths of traditional society.

60

Following shortly in the steps of the medical opinion of the time was the

law, which also stepped in to protect the interest of society as a whole

from its 'diseased minority. The law did at the time what the law was

expected to do-to safeguard and to protect. In so doing it could only echo

the medical opinion of the time, and to that extent it was 'scientific'.

What it also did, not surprisingly, was it endorsed the time worn

body of myth, superstition, prejudices and fears of the community at large.

A review of legislation concerning the leprosy affected reveals the

community view of the time, concealed in the clauses of various

enactments. It reflected, however inadvertently, the stigma perpetuated

by the body politic of the community. With the aim of protecting the

community at large, legislation contributed directly or indirectly to

the harassment faced by those unfortunate enough to be affected, by

giving legal sanctity to myth and superstition already buttressed by medical

opinion.

A number of countries passed legislation at the end of the 18th

century and in the early 19th century. They related to some form of

compulsory segregation, restrictions on use of transport and public

places and affected marriages , divorce and inheritance. In some

countries these enactments have since been revoked. In others, they

have not been formally repealed but are no longer vigorously implemented.

Similarly, a number of laws came to be enacted between 1898 and 1939

which put numerous restrictions on the physical movement of leprosy

patients and several legal impediments in social mobility as well.

Sadly, some enactments equated a leprosy affected individual's status

with that of a beggar and a- pauper and cast on him the overtones of

criminality, which made for a separate sub-culture.

N o r e s e a r c h h a s e v e n b e e n c o n d u c t e d t o s t u d y

comprehensively the gamut of Central and State legislation, to confront

discriminatory enactments and offending clauses with the scientific and

legal temper of the present day. Instead act upon discriminatory act has

been allowed to remain on the

61

statute book, cobwebbed perhaps by patchy applicability, but a blot

nevertheless on the painstaking advances made by the dedicated

band of scientists, leprologists, social workers and field specialists in

India, who have worked with what can only be described as

missionary zeal, to assist the affected to maintain and resume

'normal lives. It would be in the fitness of things if the Law

Commission might have such diverse legislation studied, so that a

logical first step could be taken to list such legislation that is now

anachronistic, and after, this necessary preliminary step, to plan for its

dismantling.

Some of the principal enactments on the statute book are: —

(1) The Indian Lepers Act 1898.

(2) The Hindu Marriage Act 1956.

(3) The Special Marriages Act, 1954

(4) The Muslim Marriages Act. 1939.

(5) The Indian Christian Marriage Act, 1872.

(6) The Indian Railway Act, 1890. (7) The

Motor Vehicles Act, 1979.

Apart Worn-these there are a number of other discriminatory areas

relating to elect ion rules , mil i tary service rules , employment and

reservation policies.

The Motor Vehicles Act of 1979 disqualifies a leprosy patient from

obtaining a licence to drive a vehicle, despite the fact that not all leprosy

patients have sensory loss of their limbs. Until very recently, life

insurance premiums were higher for the leprosy affected on the wholly

incorrect premise that the leprosy affected had shorter life spans. Military

service is not always open to the leprosy affected, even when the form of

leprosy is negative. Election booths in some places are separately

established for the leprosy affected, and sometimes manned by the

leprosy affected! Leprosy beggars are frequently transported in separate

municipal vehicles, lodged in leprosy homes apart

The expression "negative leprosy" has been used here as well as in other chapters to mean the non-infectious type of leprosy.

62

from other beggars, and some municipalities even separate them

In death by cremating them in separate crematoria.

The earliest legal enactment was the Indian Lepers Act of

1898. First enacted in Bengal, it was later made applicable to the

whole country. It is a federal law which was adopted by most of

the State Governments. Its underlying assumptions were that

leprosy was both an incurable disease, as well as a poverty-

related disease, for it reduced the leprosy affected to the status of a

pauper. To a considerable extent this Act endorsed the common

notion that leprosy was confined to the lowest economic strata.

This Act was largely employed for :--

(i) segregating beggars suffering from leprosy.

(ii) disallowing leprosy patients from preparation for sale, or

sale or handling of eatables, drinks, drugs, clothing etc.

(iii) forbidding leprosy patients from using public wells.

tanks, taps, etc. for purpose of bathing or washing.

(iv) restricting leprosy patients from working as barbers,

cooks, domestic servants etc.

(v) disallowing leprosy patients from using public

vehicles or transport. (vi) debarring leprosy patients from inheriting ancestral

properties.

The Act when it was passed could not have been expected

to make any distinction between infectious and non-infectious

types of leprosy. It was based on the premise that the leprosy

afflicted were afflicted for life. It is only against such a

background that one can hope to understand the rationale for

such stringent clauses as Sections 9 & 11. Section 9 of the Act

prohibits leprosy patients from preparing food and drinks or

even the sale of food, drinks or clothes, from using public wells,

dr iving or t ravel l ing in any publ ic conveyance or any

transportation which might affect public health. It provides

penalties which include cash fines and even imprisonme4 for

infringing any of its sections. Section 11 holds an employer

responsible for giving jobs to leprosy patients punishable by

63

Jaw. The Act provides for the establishment of segregation

camps for such patients as are found to be in notified areas.

The Indian Railways Act of 1890 bars the leprosy affected

from travelling by trains, regardless of infectivity. Similarly. the

various local self government enactments passed in the

nineteen thirties forbade entry of the leprosy affected from

public places and utilities with the emphasis on keeping urban

areas free of the disease. While the various marriage acts

provide legal cover for divorce on grounds of leprosy, (which was

confirmed by the Supreme Court in a case as late as 1973), in the vast

majority of cases, particularly in rural areas, the leprosy affected

spouse is merely "abandoned". Customary practice coming to the

fore, the abandoned half, more often than not the wife, is unable to

assert any legal right.

It was against these offending arid anachronistic clauses that

scientific and enlightened opinion began to protest, particularly against

the clauses equating leprosy with pauperism. The Fifth International

Congress of Leprosy in 1948 passed a unanimous resolution that the use

of term 'leper' be discarded, and the term 'leprosy patient' which was

much more in keeping with the dignity of human life, be employed

instead.

The Government of India constituted a Sub Committee of the

Leprosy Advisory Committee to advise on the modification of the

Lepers Act of 1898. The Committee expressed unanimously that

various clauses of the 1898 Act had been framed on the then existing

knowledge of leprosy. Moreover, the provision for its treatment and

control was dependent upon the means available at that time. Hence,

all those provisions that did not fit the then current requirement, could

no longer be considered valid in the light of the then knowledge

about the disease. However, the Committee advised that

infectious cases should be segregated from the non-infectious and

able bodied.

Even in Maharashtra, perhaps the most progressive State in the

battle against leprosy, it took more than three decades of

relentless effort before the offending portions could be

64

dismantled. The word 'pauper was deleted yet the word 'leper'

remained in title and substance. It was not until October 1,

1983 that the Act was finally repealed in Maharashtra. It was

repealed by the Central Government in its application to the

Union Territories three months later.

This is not to say that the Act has everywhere been repealed.

Only eight State Governments have additionally repealed the

Act. They are Maharashtra, Madhya Pradesh, Orissa, Arunachal

Pradesh, Tripura and Kerala, Mizoram and Tam il-Nadu.

Karnataka and Uttar Pradesh are likely to repeal it shortly.

There is no doubt that special legislation on leprosy has

helped to make leprosy a case apart . The World Health

Organisation would like to see leprosy treated by the law

makers, as by everyone else, as any other communicable

disease. Some people would prefer the legal scenario concerning

leprosy to remain stationary in the belief that the more the pot

is stirred, the more controversial the issue will become, leading

many of the leprosy affected to go "underground", thereby

retarding the rate of treatment and control.

There may be some validity in this point of view in the short run.

For the long run, however, it is necessary to amend or remove

such outmoded and clearly discriminatory legislation wherever it

exists in however effective or non-effective a form. It is equally

essential to provide for positive legislation to prevent 'dehabilitation'

and accelerate the process of rehabilitation. It is no longer enough,

if we intend to eradicate the problem in a decade, to do away

with negative legislation. Law is an important social

institution, and although it is from time to time overtaken by

traditional customs, belief and folklore, it does nevertheless

establish societal trends. To help break 4 centuries of stigma it is

essential as a first step to dismantle the old apparatus. Thereafter,

some degree of protection should be built in to accelerate the process

of rehabilitation.

65

G The Rehabilitation Factor in Leprosy in India

1. Rehabilitation Policy - the raison d'etre

Leprosy today is as much, if not more, a social problem, as it is

a medical problem. Unlike a host of other diseases where

suffering ends with the termination of the disease, the leprosy

affected suffer during and after their affliction. It is a moot

point whether the affected suffer more when the disease is in

progress or after the disease is arrested, because stigma

continues to operate and segregation continues to manifest itself

in a number of spheres in varying degree. It is this unique factor

that even after the leprosy affected are completely cured, they

may still be shunned by 'healthy' society, especially if they bear

any previous manifestation of the disease, such as apparent

deformity. Unable to retain or obtain employment, many

patients find no alternative to begging; unable to find shelter

even in urban ghettos, they have no recourse but to set up clusters

of their own. These account for the "free" leprosy colonies that

are spread unevenly through the rural and increasingly urban

kaleidoscope. Perhaps more than for other categories of the

handicapped (who are not ostracized), it has become imperative to

bring all aspects of the disease out into the open and to shape

Instruments of rehabilitation policy that must go hand in hand

at each stage with control policy, if we wish to see an end to the

disease in the reasonably foreseeable future. What is therefore

needed is an integrated approach to leprosy containment, which

must involve a nation-wide programme comprising detection,

t r e a t m e n t , ed u c a t i o n a s w e l l a s r e h ab i l i t a t i o n . T h e

rehabilitation component should involve new methods of

service delivery which should essentially be low-cost, able to

reach out to the maximum numbers within a given time frame

and, as far as possible, be community or domiciliary rather than

Institution-based.

There are two important concepts in rehabilitation. The first is

to understand and accept the need to help establish or re -

establish economic productivity. Marked as it frequently is by

66

loss of employment after the discovery of the disease, it becomes

very difficult for the patient to re-obtain employment whether

after infectivity or after the disease is 'arrested. Whereas many

'healthy persons find it hard to obtain employment, it is doubly

difficult for the handicapped and even more so for the leprosy

affected. Many have no alternative but to depend on charity.

Others are left with no recourse but to cross the last barrier of

human dignity and enter into the twilight world of begging or

Illegal activities such as illicit distillation, illicit trading or

smuggling.

The second is co-terminus with the first and lies in integrated

efforts to restore the 'dehabilitated' leprosy affected to his

family, or his community or to some form of domici liary

arrangement that might enable him, if not to be restored to his

roots, at least to be able to spring new ones. Social workers have

often come across cases where prolonged periods of separation

f rom the fami l y do no t l end themse lves eas i l y t o re -

attachments. Again, pressures on land and family holdings (all

too often in normal families as well) causes some family

members to relocate elsewhere, so it may not always be

necessary to ascribe the moving away from family land holdings

to st igma alone. Economic pressures together with the

fragmentation of land holdings are always at play, and should •

be taken into account in an overall policy statement.

Right, not charity, nor even compassion, must be the

hallmark of such a rehabilitation policy. Experience ha s

demonstrated time and again that the leprosy affected like other

handicapped or disadvantaged groups, are willing and able to

adapt old skills or learn new ones despite anesthetic limbs and

even deformity. Voluntary agencies the country over bear

witness to efforts which have successfully trained patients to

convert their disabilities into abilities. Employers have been

able to testify that most of the handicapped, including the

leprosy affected, work as hard if not harder than their 'normal'

employees. That stigma and misconceived beliefs should single

out the leprosy affected for a life time of disqualification should

not render a policy statement with any overtones of pity or

67

charity. It must instead recognize that in order to counter

misapprehension and myth, and at a stroke to remedy a

historical accumulation of discrimination. it is necessary to

enunciate a chapter that recognizes their ability to learn and to

adapt. This in order to contribute productively into the human

resources pool, and in so doing also provide momentum to the

national effort towards leprosy eradication in its most practical

sense.

It is then imperative to accept the definition of rehabilitation in

its fullest sense as going beyond economic productivity into

being re-assimilated in society. For this to happen we have no

alternative but to strengthen broad policy perspectives in which

rehabilitation must form an integral and not a peripheral part.

2. The parameters of the situation

It needs to be reiterated that there are no precise figures to go

by, but that approximations arrived at may not be considered

unreasonable. There is known to be a total estimated population

of 4.1 million leprosy affected in India. This figure may be

divided into two main categories which qualify for varying

degrees of rehabilitation services. The first are those who are

physically handicapped because of leprosy. It is accepted by the

Ministry of Health that 15% to 20% of the leprosy affected suffer

from disabil i t ies of one kind or another . This therefore

approximates figures ranging from 615,000 to 820,000 requiring

(and to an extent receiving) attention. The second category

comprises a less easily definable figure, that of the s ocio-

economically affected discussed below.

It is widely accepted by the Ministry of Health and eminent

leprologists and social scientists working in the field, that as

many as 90% of the affected are now living within their own

milieu. That would leave an estimated 10% who continue to

remain displaced, giving a tentative figure of 410,000 who are in

need of medical care and some degree of rehabilitation services.

This estimate may be considered to be on the high side, but in the

absence of any national sample survey it may be best to err on

the high side while planning integrated delivery services. This

68

estimate would comprise a number of broad categories of the affected including (a) those living in institutions of varying kinds, (b) inmates of "free" colonies (c) the leprosy affected beggar population, and (d) those who may have congregated singly or en-famille to live under the broad aegis of a specialised leprosy institution, hospital or rehabilitation centre, and may have been assisted to rebuild their lives under some community-based domic i l i a r y s chem e . No t a l l h owev er wou ld r equ i re rehabilitation services or even welcome them. It would be unreasonable to expect persons who have crossed working age to be drawn into any such scheme. Major deformity, serious orthopaedic handicap or visual deformity may also preclude serious consideration, and such persons would perhaps require shelter not rehabilitation. Leprosy affected beggars are also a category that are difficult to rehabilitate. Having once crossed a certain psychological human barrier, they are unlikely to wish to give up earning perhaps Rs. 20 or more a day in comparative freedom, to enter a situation where they may be bound to a regimen that might pay them considerably less for a full working day, This is not to say that this category should not be rehabilitated. It may be said about leprosy beggars that being perhaps the hardest to rehabilitate, scarce resources should be concentrated on such other categories as may welcome rehabilitation efforts and join in them as willing partners. This view may certainly reflect a measure of truth. However, the argument in favour of rehabilitation measures for this group is that community stigma levels rise highest on the sight of beggars bearing deformity, often causing burnt out non-infectious cases to be treated as infectious ones. Ideally the aim should be to prevent adding to the leprosy affected beggar problem by timely application of rehabilitation delivery services at earlier stages. It may also be useful to take into the policy framework two other categories of persons - viz - (e) patients undergoing treatment in control clinics who may yet be living at home, but who may have been d i sp l aced f rom thei r work s i t uat ion and ( I) t he undetermined number of persons in an intermediate zone who have not yet begun treatment and have yet not been forced out of employment. It might then be realistic to consider in this category a figure between 200,000 to 300,000, out of 410,000

69

affected persons who might hope to benefit from rehabilitation

services.

Combined with the leprosy affected physically handicapped,

the total population of both categories might vary from 815.000

to 1.120,000. There have already been established under the

National Leprosy Eradication Programme, centres for the

prevention and correction of physical deformities and the

fitting of prosthetic and protective appliances, to render patients

now able to benefit from the available package of services.

Several voluntary organisations are also providing correctional

services, and several too are duly recognized by Government,

and have their delivery costs reimbursed.

In the total context these figures should not be considered

Insurmountable. With determination and a comprehensive

policy and delivery package that closely integrates both

Government and voluntary effort and resources, it would be

possible to phase out the problem, without duplication of scarce

inputs, within a foreseeable span.

3 The prevention of "dehabilitation"

The term "dehabilitation" is etymologically incorrect but has

been succinctly described as a downgrading process which leads

to almost total disability from the socio-economic standpoint.

Because the problem in terms of numbers as well aS the

Indices of human misery is already large, the primary step in

the total package of rehabilitation services is to prevent further

"dehabilitation". Measures taken to contain the problem in its

early stages are easier to devise and implement, and given the

size of the situation, it is the only cost-effective method that is

available.

If the prevention of edehabilitation' is not treated as a major

instrument of rehabilitation policy, then on present estimates a

significant segment of persons will be displaced annually, to be

70

dispersed between peripatetic employment, movement into

"free" colonies and leprosy institutions, and begging.

Institutionalisation of the entire leprosy affected population is

patently impossible. Apart from the heavy financial burden

Involved, institutions have negative features that go alongside

their positive ones, not least of which is that institutions cannot

provide those important psychological inputs that the patient

can receive while living with his own family while obtaining

medical attention.

The rehabilitation of the leprosy affected beggar is perhaps

the most difficult of tasks. An interesting distinction has been

made between two categories of beggars* - the compulsive beggar

who himself rejects society, and a second category that has been

rejected by society. At this point let it suffice to say that once an

Individual who has been "dehabilitated" crosses the threshold

Into begging, it is not easy to bring him back, and the effort that must

be put into reclamation is many times more than it would have

taken to prevent his leaving society in the first place.

"Free" leprosy colonies too , are a mani fes ta t ion of

"dehabilitation". Everyone seems to be agreed that "free"

colonies should be "phased out". However, the larger cities in

particular face chronic housing shortages. The leprosy affected,

once they are displaced from their (often rural) communities,

have little choice but to settle in their own clusters or colonies.

This is chiefly because, as is well known, dwellers of 'healthy'

slum tenements do not easily permit entry to the leprosy

affected. As there is frequently no alternative means available

to this unfortunate segment. it is necessary to take this factor

into consideration in an overall policy framework.

"Dehabilitation" owes itself to a number of different causes

which vary in intensity depending on a number of regional and

local factors. In major measure this has been due to the

intractability of existing entrenched attitudes that result in

varying degrees of stigma. An important contributory factor in

* Dr. E.P. Fritschi "Surgical Reconstruction and Rehabilitation in Leprosy".

71

the past has ironically enough been the attitude of the medical

profession, although there is reason to believe that there has

been improvement in this area since the recommendations of

the Swaminathan Committee were accepted. Finally, the

current regulations pertaining to fitness certificates has also

Inadvertently led to the accentuation of problems of "dehabilitation".

It could well be argued that remedial action is being

simultaneously undertaken What is needed, however, is a

coordinated preventive campaign that is defined and recognised

as such, with interwoven strands complementing one another.

without being taken on an individual piece meal basis. Such a

policy package would go a long way in preventing "dehabil -

itation", in itself the first step of a rehabilitation policy. The

components of such an integrated package are listed below and

are discussed in some detail.

(1) Survey. Education and Treatment, particularly in

endemic areas, with due emphasis on public health

measures.

(2) closer involvement of the medical community.

(3) changing of fitness regulations.

(4) physiotherapeutic and surgical facilities for the

prevention and timely correction of deformities.

(i) Survey, Education and Treatment (SET)

The experiences of a number of countries have demonstrated

that whenever the SET Programme has been introduced, the

incidence of disability and deformity have been reduced

commensurate with the degree of programme development.

There is no doubt that this has proved to be a much more cost-

effective scheme, both in terms of the considerably lower per

capita cost per patient vis-avis institutionalisation, as well as in

terms of efficacy. In India, the Gandhi Memorial Leprosy

Foundat ion was a pioneer in th i s impor tan t area . The

Government of India appointed an Expert Committee in 1954

72

which adopted this model and developed it into the National Leprosy Control Programme (NLCP) in 1955.

Surveys are not conducted without attendant difficulties. It has been found that surveys often work less well in the urban situation, owing to the possible economic "dehabilitation" of infectious patients who are likely to be brought to light through surveys.* Nonetheless it is a well accepted fact that case detection, particularly in areas of high endemicity must rest primarily on population surveys.

On a rule of thumb basis, experienced leprologists are of the opinion that at least 25% of para-medical workers develop a deep sense of commitment to the cause of leprosy eradication, and this goes well beyond factors of their status and remunerative package. There is something about leprosy which, while it causes most workers to either work routinely or even apathetically, has the reverse effect on a not insignificant percentage of others. It is difficult to assess at the point of recruitment who is likely to develop in which direction, but one area of possible future recruitment in this field could well be the healthy offspring of the leprosy affected. This might mean that minimum educational qualifications might have to be relaxed to facilitate their recruitment, which could be considered. This would have a dual advantage. It might provide an understanding cadre of para medical workers; it would also give the healthy offspring an opportunity to break into the employment market with a considerable degree of security, which they are unlikely to have enjoyed in their early lives.

(ii) Education

Education is the principal long term means of preventing "dehabilitation". Twin questions arise - whom to educate and how is this best achieved at minimal cost.

There is little doubt that it is essential to combat the widespread body of myth and ignorance, which applies as much to the incipient patient, as it does to general community

* Discussions with Dr. M.S. Nilakantha Rao.

73

attitudes. With the former as a target, it is incumbent on policy

planners to break the vicious circle of late diagnosis and delayed

treatment, by teaching the incipient patient to recognize the

early signs of the disease, to understand that at the earlie st

stages, damage to peripheral nerves can be prevented and

disability entirely avoided by taking timely treatment. As part

of a daily public health campaign, the scientific facts about the

disease need to be succinctly conveyed. An important but not

cogently recognized factor, (but one that became apparent after

talking to a number of patients), is the need for such educational

campaigns to indicate precisely where the incipient patient or

person in doubt can go to for advice, reassurance or treatment.

Such programmes need to be suited to regional and local needs.

They would help in the prevention of the concealment of cases

and in taking timely treatment.

With the community as a target, the orientation of education

must change. It is vital to bring the stientific facts about the

disease out into the open. The new chemotherapy used in

treatment, which is not even particularly well known to many

members of the medical community let alone lay persons, must

be understood at least to the extent that infectivity can be curbed

within a matter of weeks by the administration of multi -drug

regimen. The age-old superstitions which are an important

ingredient of stigma, need to be attacked continuously by a

number of selected means.

Community attitudes develop early, for which reason it is

most important to introduce a few basic facts about disease and

treatment into school curricula. A few paragraphs about the

causation and cure by multi drug therapy, placed in science and

other lessons in secondary schools would educat e whole

generations to grow up with a proper understanding. It would

decisively lower stigma levels in society. It would also be useful

to draw on local community leaders, school teachers and

religious leaders to simultaneously assist both patients and

members of the community into developing more rational

attitudes. It is an alarming fact that there is surprisingly little

difference between the attitude of more educated and less

74

educated people on this subject. Indeed it is probably true to say

that the attitudes of people living in highly endemic tural areas is

perhaps more tolerant than that of urban conglomerations.

Even in urban areas, there is often less tolerance at the more

educated end of the spectrum.

From the point of preventing "dehabilitation", two specific

groups that need to be addressed are employers and trade unions.

Both groups reflect the common social misapprehensions

towards the disease. However, both groups play crucial roles

regarding employment and job retention. It is only to be

expected that if patients are denied the opportunity of economic

participation, or are driven out of employment, it contributes to

creating a parasitic class. Alternatively the leprosy affected are

driven to illegal or antisocial activity, sometimes carried out

with impunity in "free colonies" where even the law enforcement

agencies choose to ignore for fear of infection. The importance

of the role of the trade unions and employers organisations is

a m p l i f i e d l a t e r i n t h e t e x t a n d f o r m s a n i m p o r t a n t

recommendation.

Sometimes where an understanding management may be

willing to consider taking back a cured patient, trade unions

have been known to oppose the move and vice versa. Because

both managements and unions have a crucial role in the area of

employment, it would certainly help if the integrated education

campaign aims to educate these important groups through a

special educational programme designed for trade union

leadership and employers organisations.

(iii) Education by Demonstration

Community attitudes are shaped in little or greater degree by

the demonstration effect, especially where the example is set by

persons whom the public at large respects.

Sadly, there have been only a handful of pace setters in this

area. Father Damien who chose to live with leprosy patients on

the island of Molokai well before the advent of anti-leprosy

75

drugs, Roul Follereau, a French journalist, who after meeting by

chance a group of leprosy patients in Africa and seeing their

appalling living conditions, dedicated his life to awakening

public consciousness around the world, are the classic examples.

Gandhiji nursed a leprosy patient in his Sewagram Ashram,

and by this one deed inspired a number of voluntary agencies in

India to take to the field.* Demonstration, however, does not

necessari ly mean a l ifetime of dedication. When Queen

Elizabeth II of England visited Vellore in the 1960's she made it a

point to shake the hand of a leprosy patient, which gesture did not

pass unnoticed. If prominent persons in our society - judges and

journalists, administrators arid academics, politicians and

professionals were to understand that leprosy is not contagious

and were to shake a deformed hand, that in itself would go a long

way in convincing others that leprosy too is an "acceptable"

disease.

(iv) The Attitude of the Medical Community

It is ironic that the attitude of the medical profession as a

whole to the subject of leprosy should be a subject of concern.

Even six years after the submission of the Swaminathan

Committee Report, the attitude of the medical profession

remains apathetic. The Committee's findings, briefly were as

follows:

"Unless medical students are made to learn leprosy as part of

their curriculum, by including compulsory questions on leprosy

In their examination, inadequate interest in leprosy work

among doctors in service, and general medical practitioners will

continue .. . . . , the recommendations of the Mukhopadhaya

Committee of the Medical Council of India on teaching of

leprosy to undergraduate medical students be immediately

implemented."

* The selfless service of Baba Amte for the leprosy stri cken is well known throughout India. The dedication of Mother Teresa and her Missionaries of Charity in the cause of the destitute, and for the leprosy afflicted in particular, has been acclaimed the world over.

76

This is not to say that there has not been some improvement.

The Medical Council of India has issued instructions on the

teaching of the subject and has encouraged leprologists to deliver

lectures in medical colleges. However, leprosy continues to be a

low priority area and medical students continue to confer their,

priorities on the socially more 'fashionable' or 'acceptable'

diseases. It is also not entirely their fault, because leprosy as a

subject continues to be inadequately taught. The result

sometimes is that medical practitioners fail to recognize the

early clinical manifestations of the disease. It is quite usual in

city hospitals for the doctors not to wish to treat the leprosy

affected, and to refer them to leprosy centres instead. This may

in some measure be the doctors own reluctance, or it may be

because 'normal' patients are offended and in some measures it

continues to be because doctors have been inadequately trained

to treat the disease. It is this aspect that first needs to be

addressed.

The reasons are not far to seek. The subject matter relating to

the disease taught for the M.B.B.S. examination, is at best taught

inadequately; because there is no particular emphasis in its

teaching, there is a corresponding low priority in its learning.

Greater attention needs to be paid to the curricula in medical

schools, schools of nursing as well as to the training of

paramedical and other health staff. Wherever possible, orienta-

tion and refresher courses should be conducted.

The dispari t y between th e direct ives of the Central

Government and that of one of the otherwise most progressive

State Governments viz. Maharashtra, may be seen in the fact that

whereas the Central.Government Directive No. 1700/1/1974

of 5/4/1974 provides that an employee may be permitted

to resume duty provided he has remained bacteriologically

negative for three consecutive examinations carried out at

monthly in tervals af ter an in i t i a l negat ive s tage , the

Maharashtra Government requires negativity for no less than

twelve months. Meanwhile, the time period required to reach

negativity under dapsone rnonotherapy is lengthy in itself. In

77

places where monotherapy is being administered it can range

from three to five years: where the multi-drug regimen has been

launched the duration is considerably less, but these districts

are still comparatively few in number. In effect, affected persons

in employment are unable to resume duty till their skin smears

show constant negativity for upto one year after they reach the

threshold of initial bacterial negativity.

Instead, it makes more sense to take into account the factor

of the patients' morphological index, coupled with the basic

requirement of non-infectivity. A complete absence of germs

should not be considered any longer necessary especially, as in

smear positive cases, there is no longer any danger of infectivity,

especially if treatment is being taken with regularity. "If a

leprosy patient is taking treatment regularly, the chances of

anyone corning into contact with the patient 3-6 months after

the commencement of treatment is most unlikely to contract

the disease." *

In a depressed economy with high unemployment arid under

employment, where the handicapped are unable to compete with

the able-bodied, it makes no sense to expel or repel those

affected. What makes sense is to provide leave and encourage

treatment until infectivity Is eliminated and then permit the

patient to resume his work activity. This gives the employer a

much better chance of ensuring regularity of treatment, and

indeed provides a greater impetus to the patient to do the same.

Such a worker would in all probability be discharging non-

viable bacilli. In the present-day scenario, however, there is

every likelihood that the patient might wish to suppress his

discovery and may wander from pillar to post to find alternative

employment (in the event of his affliction coming out into the

open at his current work place), all the while placing his

colleagues at greater risk than would otherwise be the case.

It is, therefore, important to create a climate where fear is

lessened, and where the nature of the disease can be known. If

• Dr. M.S. Nilakanta Rao - Newsletter, National Leprosy Organisation, Vol. III No. 1, P. 6 (1974).

78

the disease is non-infectious the patient should be encouraged by

his employer to continue in his job while taking treatment. If he is

infectious he can be provided leave of absence or alternative

employment until negativity is el iminated. In a survey

conducted by the Ackworth Leprosy Hospital in Bombay*

between 1965-1970, it was found that out of 770 patients (of

whom 30.6% belonged to the smear - positive group) 29.4% only

resumed work after varying periods of treatment. Interestingly

enough, most of these were railway employees, who benefited

from the facility of free travel to clinics for follow-up.

* Dr. R. Ganapati , "Dehabil i tat ion of smcar — posi t ive leprosy patients: Experience in an Urban Centre". "Vocational rehabilitation of leprosy patients". Report on the ILO/DANIDA Asian Seminar .Geneva, 1982.

79

(iv) Reconstructive Surgery

Physiotherapy, reconstructive surgery, the provision of

protective footwear for ulcers, the case of insensitive hands and

feet are each concurrent parts of any leprosy rehabilitation

programme. This is an important aspect that is involved in the

prevention of "dehabilitation". Even where deformity has been

allowed to occur, its timely correction by reconstructive surgery

does prevent displacement from employment and community

life, especially in cases where patients themselves are motivated to

present a pleasant appearance, as for example reconstruction of

flattened noses, or replacement of eyebrows, or a desire to learn

new skills or retain existing ones.

Reconstructive surgery however should aim to be practical

and relevant to the attitude and work of a patient. It should be an

ancillary to rehabilitation and not become an end in itself. •

Care needs to be taken that this treatment is not so prolonged

that it serves to displace the patient altogether, for which reason

the periods of hospitalisation should, whenever possible, be

timed to coincide with seasonal unemployment or periods of

leave or holiday.

Surger y a lone cannot br ing about soc io -economic

rehabili tation, which needs vocational training, and an ancillary resettlement package. That it can and does play and - important role both functionally and in terms of community "acceptance" is understood. However, it must consciously be related to vocational rehabilitation. Dr. J. M. Mehta ** a renowned reconstructive surgeon, writi ng from his own experience as Honorary President of the Poona district Leprosy Committee (PDLC) had this to say:

"Starting as a reconstructive surgeon my original interest

was in the correction of the various deformities caused by

• Dr. EP Fritschi "Surgical Reconstruction and Rehabilitation in Leprosy"

•• Dr. J. M. Mehta "Social and Vocational Rehablitation of Leprosy Patients". Leprosy Research-Rehabilitation, social Medical"

80

leprosy. After this initial enthusiasm, I felt rather shaken when I

found that patients who were so operated on and who now had

good functional hands could not find employment because of the

leprosy stigma resulting in their total "dehabilitation" to a state

of penury and begging". While the PDLC has since come a long

way in terms of providing rehabilitation delivery services, the

proposition essentially continues to remain valid.

4. The role of institutions in rehabilitation

It is helpful to establish the distinction between traditional

leprosariums, rehabilitation centres and residual care homes.

When the only known "treatment" for leprosy was to isolate its

patients, the leprosarium was the institution where patients were

admitted for treatment and care. These were usually as far

isolated from the city, town or community as was possible.

Patients were provided with some form of activity suitable to the

advance of the disease, and in turn were provided with

maintenance. Their discharge depended on their cure, or if some

alternative rehabilitation became available. A rehabilitation

centre is an institution for the temporary housing of a disabled

person, where the patient or ex-patient can undergo training

or any other preparation for his or her ultimate return to society

as a self-supporting member of the community. The residual care

home, as the term implies involves primarily care, not

rehabilitation. It is the "substitute family" the patient does not

have. This is not to say that such homes do not provide activity.

Light occupations to keep idleness at bay are provided. "It must be

remembered that such patients have usually had more than their

share of suffering in life. They have experienced rejection, they

have known what it is to be unwanted, they have hungered and

thirsted physically as well as emotionally. The home should

offer to them not merely food and shelter, but a place where they

can, in the-eventide of their troubled life experience ....... peace at

last"*. There is a case for residual care homes and there is a small

percentage of ex-patients frequently with disability, who are

* Dr.EP Fritschi "Surgical Reconstruction and Rehabilitation in Leprosy"

81

destitute. Certain criteria are usually followed in making such

admissions. These include a high degree of disability, no known

relative, no shelter of their own and no or practically no source of

income. There are in-built difficulties in the administration of several

such homes. By definition such residual homes impose an unfamiliar

situation on frequently elderly and handicapped persons with

problems of personality interactions. They also call for a particularly

intense devotion and a special grace. There is sometimes a high

capital investment that is also involved. Not infrequently, they

function in isolation. and cut off the inmates both emotionally and

psychologically from the community. Residual care homes are

institutions of the last resort, for advanced patients who can no longer

hope to be independently productive.

Rehabilitation centres should first aim to prevent

dehabilitation, and encourage self employment schemes, or

community-based projects involving a low capital base wherever

possible. Experience has also long since reflected that such

institutions should avoid segregating of the leprosy affected, both for

treatment and in-house rehabilitation. Judicious combinations of the

leprosy affected with other sick and disabled, helps to break down

barriers of stigma. The repeated tragedy of several institutions lies in

the inability of the inmates to face the market place or community,

after getting used to the institution that has segregated then from the

every day world outside it. Compassion and charity make the inmate

welfare- conscious and reduces his independence.

Some rehabilitation institutions provide medical facilities together

with work opportunities, and although their inmates live in small

cottages within the confines of the institution, they are sometimes

reduced to a work camp. This is still a half way house situation, in that

it does not train the inmate to live outside the commune. In some

situations the leprosy affected_ who may have become alcoholics,

provide a greater dimension of difficulty in rehabilitation. In such cases

group rehabilitation methods have been tried with some success and

have provided an

82

answer for unskilled patients with limited capabilities, or where

physical disabilities ha 'e necessitated a division of labour.

Reconstructive surgery is available in a growing number of

insti tutions. Its appl ication must stem from a felt need.

Reconstructive surgery is an ancillary to rehabilitation and

should not become an end in itself. It requires to be practical and

relevant to the work that the patient wishes to perform. Under

the Sixth Plan, the N.L.E.P. has established four leprosy

rehabilitation promotion units on a trial basis, which includes

the prevention and correction of physical deformities and the

application of prostethetic appliances as well as protective

devices, so that the patient is better able to benefit from the

rehabilitation services available. For them to embark on the

road to reconstructive surgery, and have the road come to a

sudden end, is a doubly frustrating experience.

There are a number of institutions in the country, some run

by Central or State Governments, others by voluntary agencies,

each providing a range of services with differing emphasis, each a

product of their own innovation and environment. Sheltered

mixed employment, where it has grown, promises hope and a

balance between normal work culture which sometimes assists

in breaking barriers of isolation.

Outside the aegis of the traditional institution several

agencies have developed forms of domiciliary rehabilitation of

leprosy patients in surroundings familiar to them and as far as

possible without disturbing their own environment. They are

assisted to re-activate traditional-occupations, or start fresh

ones. They are assisted with bank loans, helped in obtaining

academic places or courses and assisted in their settlement

according to felt needs, capacities and at titudes. Continuous

follow-up is needed to develop and strengthen the relationship

between social worker anti patient.

5. The role of the voluntary sector in rehabilitation

It is everywhere acknowledged that the voluntary sector has

played a pioneering role in planning and developing rehabili-

tation programmes for the leprosy affected. In view of the high

83

cost involved in terms of time, patience and devotion, as well as the

need to provide multi faceted services - medical, sociological and

psychological - often over long periods, the voluntary sector must

continue to remain the principal pillar of support, and must in turn

continue to be strengthened in every way. For leprosy, because of the

prevailing high levels of stigma operating in society - is not everyone's cup

of tea. and even staunch social w o r k e rs b au l k a t t h e p r os pec t o f

en t e r in g t h i s f i e l d . Administrative impulses cannot be expected to

be very different from societal reaction, and therefore those who are

already working in this field or wish to do so, must be encouraged.

Voluntary effort in leprosy in India has always been

commended not least by the Government itself. The relationship with

Government has become somewhat more secure over the last few

years. There is now an annual dialogue in the shape of a meeting of

voluntary organisations engaged in leprosy work covered by the

Ministry of Health. This relationship between the voluntary agencies

and the Ministry is sometimes uneasy with arguments that can be

adduced on either side. The problems usually relate to financial support.

The voluntary organisations are quite often original and creative in their

line of thinking and approach; indeed the S.E.T. model was itself

devised by the G.M.L.F. to be later adopted by the Government.

Voluntary agencies also have a more flexible administrative structure,

and make for more sustained community participati on in their

specific spheres of activity and limited geographical areas.

However, they are not without weaknesses which include

differing perspectives and priorities of work, not especially

attractive service conditions for their workers, and of course the -seemingly

constant problem of financial constraints. This problem also

arises between donors and agencies in that resources are

sometimes raised for a particular purpose, but may be spent in other

areas, often equally deserving, but which then lead to accounting and

administrative difficulties.

There are other problems too. A major difficulty is the lack of

any meaningful coordination between the voluntary agencies

84

themselves, with the result that there is some duplication of

resources. More significantly, the innovative work of voluntary

organisations. and the developing results thereof are not

properly documented. It is sometimes the case that voluntary organisations

located not far from one another are hampered by their own

constraints of time and resources from engaging in meaningful

dialogues with one another. With rising salaries in the open market,

there is the problem of adequately trained manpower, which is

not attracted to comparatively lower salaries, and those too in an

area which is not viewed too highly on the employment spect rum.

It therefore has become increasingly difficult to establish

cost-effective projects especially with salaries and mounting

administrative costs eating into project funding.

Having said this, the role of the voluntary sector in the area of

rehabilitation has been, and indeed continues to remain

pioneering, because there is no substitute for a pioneering sense of

commitment. National as well as international voluntary

organisations provide a very wide matrix of services, and in view of

the 'high costs involved, it is important that they should continue to

receive a broad spectrum of support from the Government.

The relationship between the voluntary sector taken as a whole

and Government is not always an easy one, although there are some

splendid examples of cooperation. Much has been and continues to be said

on the subject, but it may broadly be stated that there are limitations

on both sides, and not to understand them does not in the final

analysis help matters. It is necessary for voluntary agencies to understand

the broad financial and administrative rules that govern the dispersal of

grants-in-aid, and perhaps it would assist if such rules are explained

to the voluntary agencies. Indeed, by and large, administrative details

and financial statements are not always the forte of the

voluntary agencies, and nor are many of them able to afford even a small

administrative apparatus. However, my understanding of the situation

is that if a cell in the concerned Ministry or State

85

Government could be set up to assist voluntary agencies to

understand and comply with the financial rules of Government,

especially accounting procedures and the time frame involved.

many of the existing irritants could be ironed out. This is

necessary because unless the role of the voluntary sector in the

field of rehabil i tat ion is not enlarged and strengthened,

rehabilitation will continue to lag behind the medical control

aspects of leprosy eradication.

Voluntary agencies have diversified into a number of facets of

rehabilitating the leprosy affected. These include the fitting of

prosthetic appliances and the correction of deformities,

vocat ional t ra ining programmes , rura l and agro -based

occupational programmes, self employment schemes, assistance in

the ob ta in ing o f bank loans , p rovis ion of footwear

appliances, sponsorship programme for children, and progr -

ammes for the healthy children of the leprosy affected, and

others besides. The areas covered by the voluntary sector now

Include centres for reconstructive surgery, training centres, craft

training institutes, sheltered workshops, counselling services,

placement services and so on. Most agencies have and continue

to achieve quantitatively significant results, but financial

constraints cause most of them to be selective in their choice of

objectives. With the total problem being as large as it is, and

voluntary agencies largely working on slim budgets, the answer

must lie closer to developing cost-effective, community-based

projects, with a small training span and relatively quick results. I

have come across attempts made to compare projects in the

voluntary sector with those of Government run projects. Such

comparisons serve no useful purpose. In this area of service,

wherever rehabi l i t a t ion schemes ex is t , they should be

strengthened. Effective linkages should be developed, duplication

of resources avoided, and innovative projects should be

encouraged. Better coordination is also called for between

voluntary agencies working in leprosy with other sectors of

disability and rehabilitation. A movement away from this

vertical approach is beginning to take place.

86

Among State governments, Maharashtra has itself played a

pioneering role, having long ago realized that it is the voluntary

sector that can more effectively tackle the problem of leprosy

rehabilitation. The Government provides financial assistance in

the form of grants in aid. The present rate is Rs. 95 per patient.

Goods produced by institutions such as bandages, gauze etc. are

purchased by all Government hospitals, and price preference is

given to them.

The attitude of employers is usually no different f rom the

general social attitude, with the additional thrust that employer

objectives being profit oriented, they are usually unlikely to

embark on a venture that may place profitability at risk.

Another consideration is the belief that they may put other

workers at 'risk' or otherwise antagonise them, especially when

there is high unemployment. The attitude of workers and trade-

unions towards an affected fellow worker is also much the same,

and there are far too many cases where ex-leprosy patients have

been thrown out of ( temporary) employment , o r where

permanent employees (as in Government) who were patients, find

themselves isolated at work, with colleagues refusing to share

their food with them, or otherwise reflecting hostility.

The elimination of leprosy by the concerted and twin efforts

of health care and rehabilitation are doubtful in the foreseeable

future without major contributions from the voluntary sector.

The recent past has witnessed the evolution of the role of the

voluntary agencies from the care of the disabled and social

support system, to the establishment of more comprehensive

projects involving health educat ion aids , rehabi l i tat ion

measures and promotion of the cause of leprosy alleviation at

decision making levels.- With all their disabilities (differing

priorities and perspectives, resources problems etc), the

voluntary sector has sustained contact through community

participation often in a limited geographical area of operation,

with the advantages of their more flexible administrativ e

structures and better inter personal relationships. One draw

87

back in their functioning is perhaps the paucity of participation by

the afflicted or ex-patients themselves.

6. Rehabilitation measures in 'free' or self-settled colonies

There are said to be some 300 'free' colonies of the leprosy

affected in the country, with an estimated population of 30,000

upwards. However, in the absence of any national survey, the

figures cannot be relied upon to any great degree. The fact

remains that there are a sufficient number of such clusters.

established by the leprosy affected themselves, to warrant serious

attention in terms of the provision of public health services,

vocational training and rehabilitation.

The clusters, large and small, have grown in numbers because of

an array of sociological and economic factors, not least

amongst which, in the case of those in the metropolitan and

other urban areas, is the magnetism of the cities. This is despite the

housing shortages which the leprosy-affected encounter in an even

more pronounced degree than 'healthy' destitutes. Not always

able find a place in leprosy institutions, clusters of the leprosy

affected usually come up near leprosy hospitals or treatment

centres. A contributory factor is that as urban slum colonies do

not welcome them, prevailing stigma pushes them into clusters of

their own.

In one sense this phenomenon should not be unwelcome

because it makes the task of identification and subsequent

ameliorative action easier. This is not to say that such colonies are

to be encouraged: it is merely a recognition of an existing fact.

Because such clusters do exist, it is essential to single them out for

special treatment including general health measures, leprosy control

measures, and rehabilitation services.

Certain steps need to be initiated in these colonies. In order

that public hygiene be introduced, which would help raise

general health standards, these colonies should be given priority for

their regularisation. Civic amenities such as provision of

88

clean drinking water, electricity and other facilities extended by

slum departments would improve sanitation and general health

especially of children. Outpatient clinics are needed in the larger

of such colonies. They should provide general medical facilities,

which would include first aid and family planning services

Wherever possible The healthy children of leprosy patients, arid

child patients should get the benefit of the Integrated Child

Development Scheme (ICDS). The district or zonal education

officer should ensure that healthy children, and those child

patients no longer infectious, are not refused school admissions.

7. The role of mass communication

Before any mass communication or major media effort is

launched, it is important to ensure infras truclural arrange-

ments, for it is to be expected that demands would be generated

with higher levels of public awareness, and these should be

catered for, particularly in terms of availability of drugs and

trained manpower to administer them. Without such ground

level arrangements, a major media programme would probably

be counter-productive.

There is no other means of "attacking" the centuries of stigma

that has flowed from one generation to another, in a compara-

tively short span of time, without creating the correct media

mix, adequate softwear, as well as without setting up proper

institutions down to the district levels, particularly in the

districts where the multi drug regimens have been introduced.

Three approaches should be adequate to start with. The first is

the more generalist approach which should be applied to

tackling the body of superstition and myth that have grown over

the centuries. It is necessary to explain precisely what leprosy is,

and what leprosy is not, as well as facts about its infectivity and

curability. These should be presented by the media in the

course of features on public health. Into this category may also

be placed items of important and real demonstrative value that

may swing public opinion away from its fear and consequent

89

stigmatising attitude. This approach would help to develop

positive attitudes and practices, and assist In raising tolerance

levels. The second approach should aim to enlist more active

participation from the vocal cross section of people including

school children, their leaders, youth organizations, volunteer

groups. university students and so on, but before this should be

done, a blue print would need to be prepared to channelise the

effort that is volunteered. Finally, a media mix should be devised

especially for the MDT districts, using regional and local

languages. According to the endemnicily of the districts, this

should aim to serve the twin purposes of health education, and to

disseminate specific information regarding leprosy control and

rehabilitation centres, available in each MDT district. Messages

need to be directed towards society at large (about the basic

misapprehensions about leprosy), to the patient himself (on

facilities being offered and where) as well as to non-patients

(family, friends, employers and co-workers), so that each group

may develop a positive attitude. The media mix would vary

between the rural and urban matrix. The relative usage of the

press, radio, television and cinema-would also need to be

evaluated by experts in the field.

8. An assessment of the proposed rehabilitation strategy

The emphasis hitherto has been on control measures, under-

standable in the context of the large accumulated pool of

infectivity, the length of sulphone treatment and its side effects

in a proportion of cases. Understandable, too, is the fact that the

leprosy strategy has, for a number of reasons already discussed,

developed unevenly. The voluntary sector has however,

convincingly demonstrated over the last decade and more the

efficacy of interweaving control measures with rehabilitation.

Voluntary insti tutions had realised that the only way to

overcome the dimension of social stigma and the patients' own

sense of failure and mental depression, was to equip them for a

job - to assist them in either obtaining one, or help them obtain

loans towards self employment and self sufficiency. Their efforts

have included the provision of optimum nutrition wherever

90

possible, as well as care for the healthy offspring of patients and ex-

patients.

The Swaminathan Report in 1982 firmly recommended that

rehabilitation should become an integral part of leprosy control. The

Committee fell that rehabilitation facilities be augmented or created

for all categories of the handicapped, including cured as well as non-

infective patients. They also recommended a joint action plan to be

undertaken by the Ministries of Health, Social Welfare. Education.

Labour and Employment and others, with the Ministry of Health

acting as the nodal Ministry. The underlying belief was that a

practical programme should emerge and that the benefits should be

reaped by the maximum members possible. It was recognized that no

rehabilitative programme could be a success unless public health and

nutritional aspects were not also addressed. This was particularly so

for the "free" colonies and "jhuggi jhonpri" clusters which were often

enough located near traditional leprosy homes and hospitals. The

Committee recommended that these were suitable locations for the

establishment of vocational training and production centres.

Today, the emphasis needs to be rapidly placed on positive

rehabilitation measures. IL is difficult to accept the view that

rehabilitation measures should wait until the patient has developed

deformities and is unable to retain his job. Prevention of

"dehabilitation" should be an important goal at the commencement of

chemotherapy itself.

An integrated rehabilitation plan is under consideration of the

Government, to be started in seven districts that have completed six

years of MDT treatment. There are Vizianagaram, Ganjam, Purulia,

North Arcot, Srikulum, Chingelpet and Wardha. The proposal,

presently in its blueprint stage, envisages the establishment of a

Vocational Training Centre in each district. While largely for the

leprosy affected, they would also include some proportion of other

handicapped persons. In a district with a population of approximately

1.5 million, it has been estimated that where the prevalence rate is 15

per

91

thousand, 22.500 patients are in need of MDT. It is also estimated that

an average 3,000 patients with grade II disability would require some

form of vocational rehabilitation, with a proportion also requiring

corrective and reconstructive surgery. In due course, it is proposed to

introduce MDT in other highly endemic districts by 1990, and in all

201 endemic districts by 1995. The assumption is that the scope of the

rehabilitation package would also be extended to all MDT districts.

The objectives of the scheme lay emphasis on community- based

vocational rehabilitation services. These would be appropriate to the

cultural and social milieu of the people of these districts. The

objectives would be to prevent disabilities from occurring, and where

deformities have already developed, to assist with reconstructive

surgery. This would better enable patients to be equipped to gain some

means of livelihood, which in turn would assist them to gain or regain

respect in their families and community.

The blueprint intends that the district rehabilitation centre would-

function for four years before shifting its services to another eligible

district. Within each district an institution providing for surgical

facilities would be identified, and those in need of reconstructive

surgery would be referred there. The entire cost of surgery and related

costs of transportation including a subsistence allowance would not be

borne by the patient. The envisaged number of cases requiring surgery

etc. is roughly estimated to be 3,000 in a district of the size and

prevalence rate mentioned above.

A list of 10 vocations - tailoring, weaving, carpet making; hand pump

set repairs, candle making, mats and basket weaving, pot making.

vegetable farming, furniture making and making of electrical circuits -

has been prepared. A package of seven trades • would be applied to a

district. At the district level, a committee to oversee and coordinate the

activities of the Leprosy "Rehabilitation Centre would be established

under the chairmanship of the District Magistrate. This Committee

would

92

also have on it the district Social Welfare Officer, the district level

chiefs of two nationalised banks, the district Health Officer, the

district Leprosy Officer and the Rehabilitation Officer. The latter

would function as the member-secretary to the group. This

Committee would meet once in six months. Reviews would be

conducted at regular intervals.

Before these proposals are finalised it would be useful to

examine these in the light of the experiences of voluntary agencies

which have been working both in control and rehabilitation

measures. Many of these organisations have, over the years, refined

their methodologies and acquired sharper focus. The scheme makes

no provision for social workers. The presence of the social worker

with some training in psychology and an understanding of local

community values, would be a definite asset. The experience of

several voluntary agencies has shown the crucial linkages between

trained social workers and patients. This is especially true after the

training period is over, when the patient is expected to function

independently in his new vocation. The self doubts, the problems of

adjustment, problems of loan servicing all require close monitoring

for several months. In the final analysis it would be self-defeating if

the patient having undergone vocational training is unable to fend for

himself. It would not only lead to degrees of rejection within family

arid community, but it may affect the success of the scheme as a

whole.

The problems of the healthy children of the leprosy affected need

to be treated as a special case because stigma attaches to them

especially when it becomes known that they are the (albeit healthy)

off-spring of the leprosy affected. It is not enough to only train the

patient or ex-patient with Grade II disability. The training of these

healthy young men and women would, give them the chance to

move out of the "free" leprosy colonies, and obtain jobs elsewhere.

Their situation is unlike that of the children of any other

handicapped category, and requires to be treated with special

attention.

93

The district surveys would also throw up cases of the leprosy affected (ex-patient) destitutes. These would include cases of Grade III disability, as well as old, infirm and 'burnt-out' cases. Most of them would fall outside the pale of vocational training either on account of advanced age or disabilities., There is the additional factor which may be taken into account. After a particular point, the human spirit breaks, and it is difficult to readjust such personalities to accept a training regimen. The old and infirm need a sheltered environment but it is not physically possible to match supply with demand. However, it would induce family and community acceptability if the aged and destitute be covered by a pension scheme. Even a small monetary amount would go a long way in making the leprosy affected more welcome, because he would then be a contributory member to the family fund. This need not be envisaged as a long term measure. It would take care of the aged leprosy population, while the younger elements would fall within the ambit of the training schemes.

94

H Training and Placement Services

The Directorate General of Employment and Training (DGET) in

the Ministry of Labour operates several training schemes to

ensure a regular supply of skilled manpower at different levels.

T h e s e i n c l u d e t h e C r a f t s m e n T r a i n i n g S c h e m e , t h e

Apprenticeship Training Scheme. Crafts Instructors Training

Scheme, training of highly skilled craftsmen under the Advanced

Vocational Training Scheme, as well as special training

programmes for women and training for several categories of the

handicapped through its Vocational Rehabilitation Centres for

the Handicapped. Some of the t raining programmes are

implemented by the State Governments and Union Territories,

some are implemented exclusively by the Central Government,

and some are implemented jointly.

The Directorate General of Employment and Training

provides training and employment services for several categories

of the handicapped, viz. the visually handicapped, the deaf and

dumb, the orthopaedically handicapped, the negative leprosy

affected and the mild mentally retarded. Largely through the

instrument of the 16 Vocational Rehabilitation Centres for the

Handicapped, the DGET has been admitting a number of

handicapped persons including a small percentage of negative

leprosy cases. Through 23 Special Employment Exchanges, one

each in most metropolitan cities, vocational guidance and placement services are provided. Special cells for the physically

handicapped, with special placement officers attached to the

employment exchanges ent i rely funded by the Central

Government, are also in the process of being established under

the aegis of the Ministry of Welfare.

There are 16 Vocational Rehabilitation Centres for the

Handicapped (VRCH), one each at Ludhiana, Delhi, Kanpur,

J aba lpur . Ahmed ab ad , Gauh a t i , Bomb a y, Ban ga lo re ,

Trivandrum, Madras, Hyderabad, Calcutta, Bhubaneswar,

Jaipur, Agartala and Baroda. One Vocational Rehabilitation

Centre is exclusively for the women handicapped. Two were

95

opened in 1968; thereafter others have been opened gradually over the following two decades. (In this context it is to be noted that the total achievement should be quantified in relation to the number of existing VRCH).

The VRCH are designed to provide rehabilitation services to

handicapped persons to suit their physical and psychological

capacities. The following services are offered

(i) Medical Evaluation: Handicapped persons are

referred to medical boards,

attached to rehabilitation

centres both to determine

their residual work

capacities, and suggest

curative and remedial

measures.

Handicapped persons are

interviewed for the purposes of

obtaining information about

their socio-economic

background, attainments

etc., and are also tested to

assess their intelligence,

aptitude, manual dexterity, and

personality traits.

The working capacity of each

handicapped person is tested on

the shop floor in workshops

attached to the centres, in units

that include metal assembly,

carpentry, radio as sem bl y,

t a i l o r in g and cutting,

typewriting, drawing and

painting, This assists the

vocational instructors to

96

(ii) Psychological and Social Evaluation

(iii) Vocational

Evaluation

help in assessing vocational skills

and potential. During the period of

evaluation, a stipend is paid for

upto a month. The handicapped

are also given training in work

adjustment. Counselling and

motivation for taking appro-

priate decisions in personal and

vocational areas, are also

provided.

After completion of various

evaluations, these reports are

discussed by officers and evalua-

ting staff, in a case conference

where decisions regarding the

vocational plans of the handi-

capped persons are taken. These

conferences are frequently attended

by medical specialists,

employment officers of Special

Employment Exchanges and by

employers.

Those handicapped persons who

are willing to undergo training, are

assisted in securing admissions

in Industrial Training Institutes

according to their suitability. For

others, shop floor training in

industry, as well as at

rehabilitation centres, is arranged.

At the VRCH, where skill training

workshops have been provided,

training is provided in various

vocations, to improve their skills

and to

97

(iv) Vocational Plans

(vi) Skill Development

make them more suitable for

wage or self employment. During

the period of training,

scholarships amounting to Rs.

170/- a month are provided by

the Union Ministry of Welfare.

Some of the handicapped

persons who can take up direct

employment, are assisted in

placement against vacancy notices

received from organisations under

the Central Government and State

Governments . The VRCH

direct ly receive vacancy

notifications for posts reserved

for physically handicapped

persons. Rehabilitation officers

are usually also in contact with

private industry to help promote

the employment of handicapped

persons in the private sector. To

assist with self-employment

schemes, the rehabilitation officers

are in touch with banks, financial

Institutions and the District

Industries Centres. Recently, case

workers have been placed for client

counselling, and they take up cases

after evaluation and skill training

stages, to assist in helping clients to

adjust to employment, as well as

help with follow-up services.

98

(vi) Rehabilitation and

Placement

The VRCH have been recognised

by the Government as agencies to

assist handicapped persons with

the fitting of orthotic and

prosthetic aids and appliances.

The Ministry of Welfare

provides financial assistance to

these Centres for this purpose.

An Advisory Board consisting of

representatives of Government .

i n d u s t r y, em p l o ye r s ' an d

workers and voluntary

organisations. medical specialists

and social workers have been set

up at each VRCH to advise

them on matters relating to

rehabilitation services and the

welfare of the physically

handicapped. The term of each

Advisory Board is three years.

Some physically handicapped

persons are not able to avail of

institutional and apprenticeship

training facilities in the absence of

requisite educational qualifications

for such courses. In such cases,

non-formal training is also

available at some of the

VRCH. These provide skill

development services. They do not

provide any formal certification

after he training. At present there

are seven Skill Training Work-

shops (STWs) in operation.

99

(vii) Fitting of Aids

and Appliances :

(vii) Advisory Boards

(ix) Skill Training

Workshops :

The training modules include

refrigeration and aircondition

ing, motor-mechanics, dress

making, printing and book-

binding. clock and watch

repairing, screen printing and

basic courses in electronics.

993 handicapped persons have

been trained by the Skill Training

Workshops, attached to seven

Vocational Rehabilitation Centres

by December 1987. Table 19

reflects the progress of training at

these workshops. There is no

specific break-up of the categories

of handicapped persons.

In order to provide services in

rural areas and to extend the

training facilities currently

available at the VRCH. eleven

Rural Rehabilitation Extension

centres have so far been

established at block level under

five selected VRCH .The details

are given below :

100

(X) Rural Rehabilita-

tion Extension

Centres at VRCs:

VOCATIONAL TRAINING AND EMPLOYMENT AS

THE PRINCEPAL MEANS OF REHABILITATION

The twin aspects of rehabi l i tat ion namely economic

productivity and social reassimilation must complement each

other if we are to accept the definition of rehabilitation in its real sense. Vocational

(formal or non-formal) training. employment, •

placement and follow-up by community and case workers are each a part of the complex matrix that spell the challenges of the

rehabilitation problem. Today a considerable part of the

rehabilitation effort is in the voluntary sector. The Government

has indeed established Vocation Rehabilitation Centres for the

Handicapped (VRCH), but as the figures reveal, the total number of

negative leprosy cases rehabilitated is negligible when compared

to other ca tegories of the handicapped who have been

rehabilitated. Meanwhile, the leprosy situation has grown in

complexity and it cannot be handled by voluntary effort alone. It

Is, therefore, incumbent on Government to strengthen and

enlarge its role of training and rehabilitation specific to the

situation of the leprosy affected, as well as to reinforce the

voluntary sector. It is also necessary to provide networking

services which Government alone can effectively establish.

While it is not always fair to place the major burden of all

problems on Government, leprosy is a disease which has special

problems, which is why if Government is not to enlarge its role in

the rehabilitation aspects of the leprosy eradication programme,

there will be little chance that the private sector will agree to

enlarge its role as a potential employer.

The situation as it presently exists is that most of the training

and rehabilitation effort is being provided by voluntary agencies.

Different voluntary agencies have been attending to different

facets of the problem. Some are able to provide rudimentary

training programmes along with medical services, on which the

emphasis has been largely placed. Only a few of the largest

organisations are now able to provide broad spectrum services

101

which include control aspects as well as a package of training and

placement services.

Voluntary effort, despite its pioneering and praiseworthy

role, is by definition fragmented, with each organisation often a

small pool of excellence. Until recently the relationship of

voluntary organisations with Government was largely confined

to efforts to obtain funding. It is only comparatively recently that

the Ministry of Health took the initiative in establishing an

annual conference of voluntary agencies working in the field of

leprosy control and rehabil i tat ion. This now provides a

meaningful dialogue between the Ministries of Health and Social

Welfare, with the voluntary agencies, and also between the

voluntary agencies themselves. This annual conference has

come to play a significant role in taking stock and in assessing

difficulties and developments.

However, it is not sufficient only to provide a sounding board

for current developments. In view of the fact that training

resources in the voluntary and Government sectors together

continue to be limited, it is essential to ensure that a well

coordinated networking arrangement is developed which will

computerise the total extent of facilities available under the

various agencies. This networking arrangement might usefully

fall within the purview of either the Ministry of Health or the

Ministry of Welfare. As spelled out in the following chapter, the

Directorate General of Employment and Training (DGET) under

the Union Ministry of Labour is already providing some training

programmes for negative leprosy cases through the Vocational

Rehabilitation Centres for the Handicapped (VRCH), and, in a

more limited way, under the general 3% reservation category for

the handicapped through the 1887 Industrial Training Institute

(I.T.Is) in the country. These apart, a number of voluntary

agencies are also providing a multitude of services, which

sometimes include training programmes as well as employment

and follow-up services. These need to be enumerated and,

wherever possible, strengthened. It must be recognised that while

the disabled leprosy affected account for only 0.7% of the world's

102

disabled population, they do represent a very difficult group to

rehabilitate, because stigma persists beyond the point of actual

cure. Several studies have already revealed that a serious

dimension of the problem of the leprosy affected is economic. It,

therefore, becomes necessary to tabulate the different kinds of

programmes available both in the Government and voluntary

sectors, to strengthen these wherever possible by providing new

methods of service delivery, and a new approach to employment

aspects. All avenues of employment after training need to be

strengthened. These include self-employment schemes: bank and

other institutional lending arrangement which are inescapably

l i n k ed w i t h s e l f - e m p l o ym en t s c h e m e s : em p l o ym en t

opportunities provided by sheltered workshops: employment

provided under the aegis of Government under rehabilitation

schemes for the handicapped: or open employment in factories

and other units of commercial production. The need for training

is doubly necessary for the leprosy affected, not only because it

can lead to employment, but in so doing it enables them to rise

above their predicament and gain a sense of equality, which

today only the employment market can effectively provide. It is

well established that in a depressed economy wi th high

employment or underemployment, the physically handicapped,

specially the unskilled, are not able to compete with the able bodied

for employment, and the leprosy patient has even less of 'chance than

other categories of the handicapped. This is not to sa y t h a t

s t i gm a d i s ap p ear s w i t h t he o b t a i n i n g o f t he

employment. Employers and workers do continue to reflect

prejudice in the same measure as open society reflects it.

However, with the growing awareness in the community at large

that the disease is curable and is usually non-infectious, the

leprosy affected is increasingly able to demonstrate that he is no

worse off for his affliction than other categories of handicapped

people. The need for a well devised and sustained communication

strategy has been spelled out elsewhere in this paper. A powerful

national campaign will further change attitudes as awareness

grows that multi-drug therapy is today available to effect

complete non-infectivity, often within a matter of a few weeks.

103

Training opportunities provided by the Government for the

handicapped has been discussed in the following chapter. Tables

17 and 18 provide figures of negative leprosy cases admitted,

evaluated and rehabilitated. The figures are very small to make

any worthwhile impact on the total scenario. If we are to see an

end to the problem in the foreseeable future; it is necessary to

expand the base of existing training opportunities. It is quite well

known (and the figures in the Tables amplify) that the range of

training that even the orthopaedically handicapped can

undertake is fairly wide. Until many more of the affected

population, with or without deformity. are not taken into the

t ra in ing pool t hey cannot s e r ious l y hope to en te r the

employment market . While the other categories of the

handicapped are well dispersed in the community, the leprosy

affected often live together in clusters or "free" colonies. Under

these c i rcumstances , i t should not be so d i f f i cu l t for

rehabilitation officers or para medical staff or community

workers to make special effort to enlist them into the training

pool. The network of Industrial Training Institutes is expected to

provide 3% reservation for handicapped persons. It would be

helpful if a small number of seats are reserved for leprosy cases.

on the criterion that stigma operates against leprosy. It would be seen

in Table 18 that the percentage of negative leprosy clients admitted

from the inception of VRCH till December 1987 is only 1,391

against a total of 1,41,757 handicapped persons admitted to t he

p rogramme. The nega t ive l ep ros y c l i en t s f i nal l y

rehabilitated for this entire period is 223 of a total of 42,400

clients rehabilitated, representing 0.53% of the total numbers

rehabilitated. While actual placement for other categories of the

handicapped are not unacceptable, the total number of

placements of the leprosy affected are low. The total number of

clients listed in the live, registers also represent a fraction of

those requiring placement assistance. The figure of 426 in

Table B of Chapter H is not in itself surprising, for reasons of

stigma at various levels. Often, leprosy patients are themselves

wary of coming forward, and special efforts need to be made to

draw them out. Until this not seen to be done, the private sector

will not overcome its reluctance to follow suit, although it must

104

that some enlightened employers in the private sector have set

notable examples not merely in employing the leprosy affected,

but also in purchasing their products.

It is worthwhile to briefly illustrate the operation of stigma

in the purchase of finished goods. A well known leprosy

rehabili tation centre in the voluntary sector received an

important order for wooden packaging crates from a leading steel

mill. However, when the workers at the steel mill learned that

the crates were being manufactured by leprosy affected persons.

they were adamant in their refusal to receive or touch them. It

was wi th cons iderable d i f f i cu l t y that the en l ightened

management of the mill was able to persuade their unions and

workers that there was no health risk whatsoever in the ir

handling of the wooden crates. However, they boycotted the

workers f rom the rehabi l i t at ion cent re , who were sent

periodically to accompany the consignments. It took several

visits spread over a period of years before hostility towards the

workers from the rehabilitation centre gave way to some form of

acceptance by the workers in the steel mill.

Employment

The vast majority of the leprosy affected and handicapped

l ive in the informal sector . It i s clearly impossible for

Government or voluntary effort to provide sheltered employment

to all. The answer must lie in self-employment schemes, which

may include the opening of small shops (provisions, tailoring or

trading) or agricultural work or poultry or cattle rearing.

A major consideration by Union and State Governments is

the help that should be provided in giving interest-free loans, or

loans at nominal rates of interest. Despite the relatively easy

availability of loans for the non-handicapped, the leprosy

handicapped, especially those bearing deformity continue to face a

number of problems. They have often experienced difficulty in even

obtaining the loans forms, particularly in cases of those who

bear deformity, or on occasions when their background

105

becomes known to bank staff. The experience is that unless there is

a voluntary organism ton acting for such clients, or unless a

bank manager is especially sympathetic, individual applicants

soon give up any desultory efforts in this direction.

Aware of these realities, some voluntary organisations have

developed a good rapport with banks, whom they approach after

first motivating the client to undertake some form of economic

activity. It is necessary for the individual to feel an inner need.

An occupation thrust on the individual does not usually fructify.

Some studies and surveys have shown that the loans taken by the

leprosy affected have on the average a good repayment record.

However, banking institutions should themselves be more

forthcoming in their assistance. This would help in measures for

self-employment in the agricultural sphere, particularly in the

informal sector. This trend should be encouraged alike by State

Governments, voluntary effort and financial institutions,

because it helps to reduce 'dehabilitation' and eases the pressure

on the cities.

Capital-intensive schemes and sheltered workshops do

provide employment, but to a very few, which is why they may be

advocated in positive cases, or in cases with severe physical and

mental disabilities or in cases of special categories, such as young

destitute women who need to be provided with a sheltered

situation. Wherever possible, however, such schemes should be

used as a training ground and designed to enable an 'apprentice' to

move out of a sheltered situation as early as possible. In general,

however, high investment per capita is not a desirable goal for

countries which have a major leprosy problem.

Rehabilitation and Adjustment

If rehabilitation is to succeed in its true sense, the thrust of

enlightened advisory services must equally be on the re -

orientation of the mind, with the need to emphasize to the

patients' their strengths, not their weaknesses; their abilities,

not their disabilities. The approach should not be in the 19th

106

century charitable mould: it needs to be one where the patient can-I

be taken as an equal partner in the country's developmental

programme and equipped to hold his own, albeit in a competitive

world where jobs are scarce. Into such a category usually fit only

the relatively young and those without major disability. It is this

category that voluntary agencies can successfully hope to train or re-

train. It often becomes necessary to begin with the training of minds to

accept a course of life where they need to aim to become a useful

part of the social and economic fabric, and not opt out into the

seemingly comparative freedom of the sub-cultures of begging,

illicit distillation of liquor, delinquency or crime. This approach is

already being followed by voluntary action in greater or

lesser measure. But as voluntary effort has also

demonstrated, where this is not consciously attempted and

pursued, there is often a slideback because of the difficulties that

arise in the struggle for economic rehabilitation. It is not enough

that the disease is halted and the patient vocationally trained.

There are several psychological difficulties involved in the "re-

entry" process into society.

These difficulties are faced on both sides of the fence. Society

cont inues to ref lec t i t s suspicions about leprosy in i t s

stigmatising attitude. The patient, on the other hand, having

been hurt in varying degree by family, friends, neighbours, co-

workers and other members of the community (including

possibly even members of the medical profession) is wary about

leaving his new community of fellow leprosy affected (within the

sheltered institution, hospital or leprosy colony as the case may

be). No rehabilitation programme can entirely succeed unless the

psychological impairment. if any, is not first treated, and this

requires continuous follow-up by social and case workers who

should be able to guide and help the ex-patient, as he struggles to take

his initial steps in the outside, unsheltered world.

There would appear to be marked improvement in attitudes

towards the disease as a direct result of Governmental and

voluntary effort in the last decade. Hostility remains, but it

appears to be less than in earlier years. In the field survey that

107

the author conducted in 1987, which represents a broad spectrum

of areas in North. West and South India, the family reaction of

192 patients sampled indicated that upon the first discovery of

the disease. in 98 cases (51.04%) the reaction was cordial. There

was indifference in 23 cases (11.97%). There was a negligent

attitude in 41 cases (21.35%) and boycott in 19 cases (9.89%). In

11 cases (5.72%) the individual did not disclose his or her disease.

Combining negligence and boycott as representative of a hostile

attitude, it may be seen that in 31.24% of cases, patients

encountered a hostile attitude from family members upon the

discovery of the disease. In 51.04% of the cases, however, family

members accepted the disease without affecting hostility.

In the cases of friends, the patients met with a much lower

degree of cordiality. Of the 192 cases sampled, in only 54 cases

(28.12%) did relations with friends remain cordial. Friends

reflected indifference in 28 cases (14.58%) and negligence in 43

cases (22.39%). Boycott, too, was higher at 25 cases (13.02%). Not

unexpectedly, the disease was not disclosed in a much higher

number of cases at 42 (21.87%).

An interesting and healthy development lay in the sample

conducted on the patients' initial exposure to doctors and other

members of the medical profession. Of the 192 cases sampled, in

as high as 165 cases (85.9%) the patient found the attitude of

doctors helpful; in 19 cases (9.89%) there was indifference, and

negligence was reflected in only 5 cases (2.6%). It needs however to

be stated that the samples were taken largely in controlled

areas near leprosy hospitals, or of groups under regular

treatment.

The imperatives of training

Training resources are scarce. With the need to stretch them as

far as possible, training should be applied wherever returns are

likely to be 'highest'. Within the age group of 15-45, the

incumbents probably have a higher degree of motivation to

acquire skills than in higher age groupings. The younger age

108

group are also more likely to have had a basic school education

but no automatic job opportunity. There is also greater

likelihood that skills, having been acquired. may be shaped into

economic livelihood, given other assumptions (bank loans.

ava i l ab i l i t y o f app ara tus e t c . ) . Econ o mic and soc i a l

rehabilitation would in such cases become a possibility. What

has to be res i s t ed i s t he t endency fo r t r a in ing and/o r

rehabilitation institutes to convert themselves into permanent

abodes for a chosen few, which ren ders the pol i cy o f

rehabilitation self-defeating. In these cases such institutions

become place of sheltered employment for a few. There is indeed a

case for sheltered employment, but the distinction between a

training institution, and an institution intended to provide

sheltered employment, and a residual care home for destitute

cases needs to be maintained.

Training must come early, it must be reasonably short in

duration, and it should be purposefully shaped to provide for the

type of employment, as far as possible to suit the milieu from

which the incumbent sprang. It is unlikely that the very disabled

or old would take to training. Training as an input in currently

held occupations if any. may be preferable. There is also little use in

preparing specifically for the cities. In an environment where

there are a host of difficulties arising from factors such as the

rising cost of living, the problems of housing and a quicker urban

pace, it would make it even more difficult for the incumbent to

compete with the able bodied. In a situation where there is a good

rapport with industry, persons may be trained specifically to suit

certain jobs openings.

It needs to be stated that employment in open industry is

difficult to obtain. However, whether, the end result aims for

industry or self-employment, the incumbent trained to operate a

lathe or machine in the light engineering industry, would stand a

better chance than his untrained counterpart . Machine

operators well trained in the use of such machines are usually in

demand and the pay is good. A pre-requisite may be a high school

level of general education. The problems with large scale

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industry are however compounded by competitive entrance

procedures and higher educational qualifications demanded, not to

mention the problems of living in large cities including

transport, housing and schooling costs. Barring exceptions.

aiming for large industry should not be the goal. Small

industries are a better alternative. Although the problem is that

employment here is relatively temporary in nature, at the same

time entrance qualifications are also simpler, they are less

structured and bureaucratic, and their technology is also usually

simpler. Training should therefore aim for the small industry

segment of the employment market.

In selecting an occupation the patient's physical handicaps

must necessarily be taken into account. Work involving heat or

friction is unsuitable for anaesthetic hands because the patient

cannot feel to establish his or her threshold of tolerance. Those

patient trainees whose hands and feet are not anaesthetic can be

given a wide range of t ra ining: those whose hands are

anaesthetic but fingers are intact may be given training where the

Implements they handle or the machines they use bear no sharp

edges, or are not hot, and where implements are rubber coated.

Sharp tools can be used with a relatively higher degree of safety

over tools that involve heat or friction because a patient with

anaesthetic hands can see the sharpness, and does not need to

rely on feeling to warn him of danger. For those whose feet are

anaesthetic and who should not stand for too long, there may be

need for special footwear as well. While light engineering

workshops and fabrica t ion uni ts should safeguard the

patient/trainees from molten metal, welding, metal casting etc.,

some voluntary agencies provide excellent training schemes that

Include a wide range of engineering skills.* It is interesting to

see, given the basic safeguards, how quickly highly motivated

young trainees are able to adapt themselves to such training and

usually remain accident free in the process.

* The Worth Trust at Katpadi near Ve l lore, Tamilnaclu, runs two l ight engineering units on commercial lines staffed largely by handicapped workers, chiefly the leprosy affected. It also runs a training centre for handicapped. youth

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The training imparted by some of the larger voluntary

agencies represent pools of excellence. Since most of the affected live in

rural areas, training could advantageously be agriculture- based, involving

the production of food, fruit, vegetables, milk or poultry. However, dairy

farming and animal husbandry should be in general confined to

patients who have the necessary land and family help to be self

employed. It could be combined with training in small scale

diversified agriculture, the use of appropriate technology and of

natural energy (solar, wind power and simple treddle machines). In self-

employment schemes, the importance of traditional occupations

especially in the rural context, is significant. If the patient has to acquire

his own raw materials and market his products, he needs the

cooperation of other related trades people. Alternatively, the

rehabilitating agency should undertake to supply raw materials, and

assist in the marketing of finished goods. The Khadi and Village

Industries Commission have specialised in rural-based schemes to

encourage self-employment, and these can be designed around the

leprosy affected. The Vocational Rehabilitation Centres for the

Handicapped and the Industrial Training Institutes provide -broad

spectrum training schemes ranging from plumbing, basic electrical

engineering and repair works, motor mechanics, tailoring, typing,

sewing, printing and cloth dyeing, in all of which training modules are

well developed, relatively simple and fairly inexpensive. Their

applicability to the leprosy affected needs to be intensified.

The importance of case workers to the leprosy situation cannot

be emphasised enough. Rehabilitation is an area where patients or

trainees face insecurity problems. Where patients have the outward

manifestation of the disease, they need a father figure to help them

overcome a host of problems arising from their lack of self-confidence.

The case worker is also a counsellor. Someone trained and experienced

must be available to share the trainee's fears and to answer his doubts. There

are patients who have lost the Jobs held before the advent of the disease and

are perhaps unable to get

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re-employed. Re-employment as near as possible to previous or

traditional occupation is of advantage. This is particularly important in

India and elsewhere in South Asia where strong cultural and social

traditions often allow only a limited degree of freedom of occupation.

There are voluntary agencies that have refined the case worker

method, especially those engaged in domiciliary rehabilitation. Here

the primary task of case workers is to identify the person requiring

help and to assess his felt need in the context of his Immediate

environment. After helping to prepare the profile of the unit that is

intended to be established, they assist with a bank loan, or project seed

money from the voluntary agency. Follow-up visits continue through

the initial periods of teething problems, until self-sufficiency is gained

and repayment of the loan begins.

Training centres do need to be established on business like lines.

They should, wherever possible, aim to grow into self supporting

units. The philosophy of self reliance must permeate itself to its

incumbents. It is an advantage if training is conducted, wherever

possible, to the standard syllabi approved by State or Central

Government. Training should invariably be administered with an eye

to placement, because to use scarce resources and then not have them

applied to gainful employment means not simply wasted resources,

but also an increased measures of frustration that persons caught up in

this intricate social web must endure.

Re-training needs to be thought about not in the sense of refresher

training, but in the sense of learning a new trade. An incumbent who

may have been trained for a particular vocation, may have had to lose

it owing to growing disability of hands or feet, and an inability to use

anaesthetic hands or feet. In such cases it is not usually a simple case

of re-training in a new profession; training for adjustment formally or

informally is quite often a pre-requisite, for the mind must be

sometimes also prepared to accept a 'lower skill, before its application

can actually be translated into successful rehabilitation. Leprosy can

seldom be accepted as merely a medical problem; it has vital

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psychological and social facets, and unless social and case

workers are present alongside the medical and para medical

workers, to tackle the problems of the mind alongside the body, it is

difficult to visualise a solution in the short term.

Voluntary agencies working in this area have demonstrated

time and again that after training, a moderately deformed

patient can acquire several skills with a reasonably high degree

of proficiency, including light engineering skills on a wide range of

machines. Where such training is provided in a mixed milieu, as

at the Worth Trust in Katpadi in Vellore where either the

leprosy handicapped are mixed with other categories of

handicapped, or with the non-handicapped, integration emerges

more easily. However, in the case of self-employment schemes, it

is frequently the case that the leprosy affected often face

considerable difficulty in the marketing of produce because of

stigma, and therefore it once again becomes necessary for the

State or the voluntary agency to attempt to direct the acquisition of

skills into those areas where the final product can find itself a

ready market. With a regular income, re-integration becomes a

possibility, and economic independence a viable shield against

stigma.

As the statistics in Tables 17 and 18 make clear, the number

of negative leprosy persons being trained under the VRCH is few.

Those being placed are fewer. The reasons are clear. The sheer

numbers of handicapped persons are overwhelming. With high

levels of unemployment and under employment, employers have

no special reason to wish to employ handicapped persons when

they can get non-handicapped workers for equal wages. The

employer's priorities are frequently in conflict with those of the

leprosy handicapped, the case worker and the rehabilitation

agency. The employer looking to investment and the reduction of

his costs is unlikely to continue with or accept afresh what he

may view as a medical risk. There are employers who may

themselves be sympathetic but are afraid of industrial action

which might be initiated by the employment of an ex-leprosy

patient. Nor are the employers presently receiving any incentive

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of tax remission f rom the Government for employing

handicapped persons, especially ex-leprosy patients. Stigma

prevails at every level in the community, and there is no special

reason to believe that employers or for that matter personnel

that man employment exchanges and training programmes are

excluded from the general fear or misapprehension of this

disease.

Under these difficult but comprehensible conditions, the task

remains a daunting one, especially in view of actual placements

recorded. The answer must lie in strengthening training

schemes whenever they are found reasonably well structured.

Training schemes and placement services (and in some cases.

follow-up activities by professional case workers), are well

developed in several voluntary agencies . These should be

identified and reinforced. It is necessary to appraise voluntary

work annually, but it will be self-defeating to be overly critical,

or to unduly delay grants-in-aid. At the same time, Government

in the Ministries of Health, Social Welfare and Labour should

computerise all training and placement services, and update

these annually. An annual compendium should be published on

training programmes and services offered. Their per capita

costing should be established, together with placements (if any)

achieved. The results of follow-up on placements should be

determined. This would form part of the larger networking

arrangement, which would also ensure the preparation of a

manual of jobs for the handicapped.

The total package must necessarily lie in going beyond the

control dimension alone into the economic, sociological and

psychological factors that govern society's attitudes. Medical

control policy must be accompanied by a comprehensive,

relatively inexpensive and easily adaptable methodology that

aims in the first instance for the prevention of "dehabilitation";

or where "dehabilitation" has already occurred, to establish a

policy for vocational rehabilitation leading gradually to social

reintegration. Only with the recognition of this fact, and tne

acceptance and adoption of a policy leading to economic and

social rehabilitation, will the eradication of leprosy in its widest

sense begin to become a reality.

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