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Solidarity Run
Leprosy is dreaded! What else could happen ... when 'quick-cures' and
'deformity-devoids' shun their identities... gag their positive experiences about
the treatment? '4th April Solidarity Run' for once proudly paraded the hidden
trove of 'Cure' and 'Strength'. 300 strong and sturdy persons with Leprosy history,
ran through the city's main thoroughfares, hand-in-hand with 2,000 non-patient
Bhilaians.
-
D/5 S/S'
COMMUNITY HIALTH CELL
47/1, (First Floo.•)□;. Marks Hoad
BANG/4L0..2-5b0 001
Publication co-sponsored by:
1.
Director
Health & Family Welfare
Government of Madhya Pradesh
Dr. T.P. Sharma
Bhopal
2.
Director
Medical &. Health Services
Bhilai Steel Plant
Dr. R.J. Choubey
Bhilai.
3.
DANLEP
7, Golf Links Area
New Delhi-110 003.
Foreword
What management issues are there in a leprosy programme? After all once you have the vehicles, staff,
drugs, what else is there to it? At the time this question was raised, we at Danlep didn’t have the answer.
But we did know that until patients suffering from leprosy were treated like patients suffering from any
other disease, leprosy as a public health problem would not be resolved.
Since then several field experiments have taken place. The names like Kanha, Dongargarh, Purena, Bhilai
appearing several times in this publication have come to signify the lessons that surfaced during the
training camps organized in those locations.
Dr. B.H. Sorensen
The first step was taken at Kanha National Park where team training prior to implementation of MDT was
organized for the staff of ECU Rajnandgaon. The Danlep interacted closely with the ECU staff to uncover
the barriers between the field staff, the community at large and the patients.
What became clear was that field workers felt lonely and needed link people to associate with in the
villages. Since this seemed to be a major barrier preventing field staff from giving leprosy patients their
due service, an experimental workshop was organized in Dongargarh with community leaders as
potential link persons.
This second step revealed that demystification of leprosy was an important tool in fear removal. That
understanding about low infectivity and the possible cure with MDT was crucial. With this understanding
the community was willing to come forward and play an active role in the removal of this disease. Not by
segregation and isolation of patients as has been done for centuries; but by actively helping them face the
disease boldly.
Many skin diagnostic camps followed and people came forward publicly to have their skin problems
diagnosed. With no threat of social exclusion, the need to hide suspected leprosy vanished.
Still, the end to isolation and segregation was only talked about. The real test was to see if field workers
and community would actually live together overcoming their earlier beliefs. The Dongargarh camp held
for 14 days of intensive treatment, by bringing together with patients the health educators and the field
staff, achieved many of the objectives set towards this end.
Chief Co-ordinator
DANLEP
New Delhi
The Purena camp held in February 1988 represented the third step—the final total merging of patients,
community members and the field staff. It helped in breaking all barriers between them and in focussing
attention on achieving the common goal of treating leprosy as any other disease for which there is a cure.
This camp was organised entirely by the local field staff and the local community. The change in
management represented also a take-over of responsibility. Acceptance of the community action concept’
by the field staff and the community at large for counteracting leprosy became a reality. This was
achieved through the actions of the field staff and the community alone, without any additional external
resources.
Dealing with ulcers, this socially unacceptable feature of leprosy, was successfully initiated at the second
Dongargarh camp. This has now become a regular feature in our field programme. Of major importance
in dealing with ulcers is an understanding of the cycle-anaesthesia - ulcers and deformity - social
ostracism.
z
During the month long Prayas Aarohan’ programme at Bhilai, April 1988 major emphasis was given to
reconstructive surgeiy. This emphasis has also helped to focus on anaesthesia, opened the eyes of people
to the importance of early diagnosis and care for prevention of further deterioration. This latest step was
taken as an answer to demands put forward by the patients and the community now that the field staff
had entered into an open dialogue with them. Having ulcers, deformities and being socially destitute is
associated with leprosy in the minds of most people. We, the health providers may talk of killing bacteria
and non-infectivity but to most people leprosy is cured only when the “Social symptoms" are dealt with.
If we cannot offer surgical reconstruction and social rehabilitation to leprosy patients, when this is what
is foremost on their minds as definition of cure, then who are we to call ourselves service providers.
Historically leprosy surgery was done at a few specialized mission hospitals. For these services to be truly
of use to people they must be available in an acceptable setting. In Bhilai the operations were done at the
local general hospital by both visiting and local surgeons. Patients were accommodated in the general
ward and pre- and post-operative care remained the mixed responsibility of the hospital physiotherapy
set-up and the local field staff. Local community joined hands with the hospital administration to meet
the payments for this service.
Both successes and failures have been recorded. The lesson learned is that if we accept unconventional
solutions, the general health system has the potential of reaching these services to rural people.
A problem that remains with us is that of the social rehabilitation. Possible paths for rehabilitation are
likely to be once again desegregation in the work-situation, given a little assistance a patient can meet his
need of normal job or routine work in a mixed employment situation.
We have very convincingly seen that solutions can best be found by entering into a dialogue with patients
arid the community. Only by taking into account the needs of the people can we find passable roads. If
given the opportunity, it is my conviction that the triad of patient, community and the field staff will also
be able to find a way of channelling leprosy-patients into a sociably acceptable position in life.
Contents
Foreword
Dr. 'Birte Sorensen
9.2
33
Overview
Pradip Singh
Janak Ram’s Radi Maa
S.M. Naidu
9.3
Sabdi Bai
R.L. Sahu
35
9.4
Mantora Bai
Udai Lal
37
9.5
Return of the Prodigal Son
Dr. Runu Chatterjee
38
9.6
The Common Village Tank
Ishwari Soni
39
10
Developing Communication In
Leprosy Work.
Bhagwan Lal Sharma
41
11.
Corrective Surgery in Leprosy at
General Hospital: Missing Linkages
Dr. R.J. Choubey
45
12.
Managing Corrective Surgery
Delivery.
Dr. P.L. Chandrakar
48
13.
Flow of Corrective Surgery Cases And
The Field Work
Sham Meshram
51
14.
Role Of Corrective Sui^geiy In Leprosy
Rehabilitation
Dr. N.H. Antia
55
15.
Beyond The Vacant Looks (Hindi)
N.K. Soni and K.D. Achaiya
56
16.
Deformity And Leprosy To-day
'Dr Dinkar Palande
58
1.
IrirGroup Absorption of Cured Leprosy
Patients: Unfinished Task
S. Balakrishnan
1
2.
The Risk runners and the Drop-outs
R.A. Christy
6
3.
Understanding and Knowledge:
Poles Apart
Rita Pah and Anuradha Ghosh
8
4.
Raffi s Reluctance
Shantilata Varma
12
5.
From Despair to Hope:
Economic Rehabilitation of Leprosy
Patients
Harsh Mander
14
Whither Openness
Dr. B.P. Mukherjee
15
New Life For Whom?
Mohan’s Embarassment
Ajay Kant Bhatt and Vijay Bhatt
20
8.
Stainless Steel Tumbler
Arun Gupta and Illa Dutta
24
9.
Critical Factor In. Leprosy Patient
Care: Nursing the Group Identity
T. S. Nataraian
27
6.
9.1
Thudda Ramchand
Amita Prashar
31
17.
18
19.
Role of Physio-Therapy in Corrective
Surgery
Kesar Das & M I. Khan
28.
Pivotal Role of PHC In The Follow-up Of
Intensive Therapy
93
Dr. K.L. Bhandarkar
Corrective Surgery: Need for Pre Operative
61
And Post-Operative Patient Care.
Dr G.N. Malviya
29.
Community In Actions: The Focal Point
for Integration
Dr. B. Devangan
Patient Self-Care &> Disability Prevention
in Leprosy Control Programme
Dr. H. Srinivasan
30
59
Inching Towards High-Rise Credibility
Nehru Sharma and Jitendra Kalchuri
97
30.1 Panchayat Char Without Light
• Lingering Influence
B.L. Rose
101
30.2 The Morose Patient
B.S. Bhatnagar
103
104
72
30.3 Bhawani’s Shirt
• Panchu
R.G. Thawait
73
30.4 Ramkali
• Donated Blankets
Savitri Tiwari
105
Leprosy Beyond Self-Care
Dr. P.R. Mangalani
From Donagarh to Dongargarh
Suresh Soni and Harjeet Arora
30.5 Sarpanch And His “Kodhis’
• Censored Message
Bhimrao Khatarkar
107
75
Dongargarh To Bhilai
Pandit Patankar
109
64
20.
Touching Moments with Leprosy Patients
in the Hospital Wards
66
Prem Pandit
21.
A Stich In Time Saves Nine
Dr. S.L. Gude
22.
23.
24.
25.
26.
Functional Approach To Hand Surgery
In Leprosy
Dr. Satish Arolkar
Leprosy Control from Across the
The Drawn Lines
Dr. T.P. Sharma
Path Finding In Dongargarh (Hindi)
(English)
70
78
81
85
Dr. G.P. Mishra
27.
95
This Happened In Dui^: Exercises
in Community Participation
Dr. S.L. Gupta
90
31.
Overview
Pradip Singh
A group of Leprosy patients was gathered before the
Health Centre in the monthly ritual of taking the MDT
dost and were at a bit of a loss because the person who
used to give them drinking water to wash down the
medicines was not present. One of the patients, a woman
ravaged by the disease, but with a powerful personality
which had risen above the vicissitudes of the ailment and
social discrimination, asked one of her fellows to go to the
house across the street and ask for some water. He was
obviously hesitant, and was promptly upbraided by the
lady as a shame to the group for being too scared of refusal
to even go and ask. More scared of her than he was of
possible rejection, he went.
They were given not just a bucket of water and a ladle, but
a tumbler too by the householder, who then came to
collect the bucket, reminding the group that he had joined
them in the mel-jol daud, where leprosy patients and the
leprosy-free members of the community had run a
marathon together. He was truly leprosy-free, normal,
because he had the disease neither in its bacterial form
nor in the form of a prejudice.
A single act of self-assertion had revealed a strength in the
sufferfer and in the society which had contributed to the
anguish of the sufferer, bringing cure for both in the real
sense of cure. This was result of the new awakening being
brought about in this vital, throbbing heart of India, Bhilai,
from where the ripples of change may well sweep the
entire country and see mankind triumph over an ages old
prejudice, making it the first such victory in the long and
troubled history of our civilisation.
Manager
Public Relations
Bhilai Steel Plant
Bhilai.
Leprosy is one of the primal fears of mankind, all societies
and all civilisations down the ages have seen in this
disease a stigmata, a curse of the Gods, a judgement on the
individual and his family, to be shunned and feared in its
manifestation by everyone not so afflicted. The terror of
the disease for its unfortunate victim then, as now, was not
so much the ravages it wrought as the psychological and
spiritual desecration of the sufferer’s soul that inevitably
followed discovery. Yes, discovery, not diagnosis, as it was
viewed as something akin to the revelation of a sin rather
than the identification of a disease, and the sufferers
sought to hide the fact of the ailment until betrayed by the
deformities it caused.
The disease then as now is the social reaction leprosy
bring-s—not the affliction of germs or bacteria causing or
the loss of sensation, the deformities etc. The revulsion
towards the sufferer was the result of ignorance, that it
Continues today is perhaps symptomatic of the
persistence of superstitious beliefs even in our vaunted
modem age of enlightenment.
The saddest feature of social prejudices against the
disease is the fact that the patients too, as former members
of the so-called normal community, accept the discrimi
nation practised against them by the community. The
battle against Leprosy can be said to have really begun
only when hope and self-respect are created among the
Leprosy-afflicted, and society begins to recognise its own
shameful role in the perpetuation of the disease. Early
diagnosis and proper treatment can become a reality
leading to cure only in an environment which encourages
people to look upon Leprosy as a disease like any other,
caused by bacteria and easy to cure.
However, today there is hope. Today there are conscious
efforts by governments, companies, institutions and
individuals in the community to tackle the problem of
Leprosy at its basic level. The guiding principle today is to
treat Leprosy as any other disease, as it indeed is, and
success is measured against the yardstick given by the
World Health Organisation’s definition of health as not
merely the absence of disease but a positive state of
physical, mental, spiritual, emotional and social well
being. The disease called Leprosy is easy to cure, and
modern methods of corrective and reconstructive surgery
can take care of the deformities which may have been
caused through early neglect. It is in repairing the selfesteem of the individual and in his mental, spiritual,
emotional and social rehabilitation that we see society at
last adopt the correct approach leading to eventual
eradication of the disease.
The community action programme launched on March
28f 1988 in the Bhilai Steel Township with the active
participation of various governmental, private and
international organisations sought to go beyond the mere
clinical treatment of the medical symptoms to activate the
entire society, the patient and family included, towards a
recognition of the social injustices involved in our
treatment of Leprosy patients, and helping people see that
like all superstitions, this too would vanish once the light
of reason was thrown upon it.
The-case of the 'Water Bucket ’gives one hope,-that the
objectives of the national Leprosy eradication may
succeed given a continuing response by all the elements,
the patient included, in an interaction which would break
the social barriers against the Leprosy patients, opening
the way to eventual eradication of the disease, in a moral
victory unprecedented in the history of mankind.
1. In-group absorption of cured leprosy patients:
unfinished task
S. Balakrishanan
Some of the Patient Profiles prepared during the month
long Leprosy Awareness Campaign organised at Bhilai
reveal that the patient’s personal journey down the paths
of loss of self-esteem, social awkwardness and depression
begins the moment the diagnosis of leprosy is confirmed.
The descent into a spiral of goallessness and selfeffacement once begun gains momentum with every
passing day, and if not arrested in time can and does
| become almost irreversible.
D.G.M. (Personnel)
Bhilai Steel Plant
Chairman
Samagra
Prayas Aarohan
Samiti
Bhilai
. community which causes the psychological devastation
to the patient. If curing the patient was perceived to begin
with his hopes and his morale strengthened, the
community itself needed a preventive dose, for its moral
sense to be strengthened, its nobler instincts to be
awakened.
Over the past year and a half, the Department of
Dermatology of the BSP Main Hospital has done
remarkable work in the interior of Durg and Rajnandgaon
Districts, providing a good cover at the diagnostic stage by
holding a series of "Skin Diseases Diagnostic Camps”,
clearing avenues for patients who had been fighting shy of
climbing the steps of a Leprosy Clinic openly. These
Camps proved a boon to our Mines Personnel, enabling
them to take regular treatment of Leprosy through this
medium.
It is precisely at this point of time, the moment of diagnosis,
that needs to be the starting point for the campaign of
hope and rehabilitation. By looking to the established
colonies of Leprosy patients as the prime targets of
Rehabilitation, we are not tackling the problem at its
source; giving hope to the hopeless is certainly a laudable
objective in itself—but perhaps even more meaningful
would be the objective of
Bhilai Steel Plant’s Leprosy
preventing the seeds of
Eradiction Unit, located on
hopelessness from germi
G.E. Road,has been render
The patient must be made to realise that
nating. The patient must be
ing
yeoman service to the
confirmation of the disease is the starting point
made to realise that con
patient community, admi
of a journey back to full recovery, to complete
firmation of the disease is
nistering Multi-Drug The
the starting point of a
normalcy.
rapy long before it was
journey back to full re
formally launched in the
covery, to complete nor
District. The result has
malcy. Without the care which we now hope to provide,
been heartening, with more than 50 per cent of the
the patient’s slide into despair is fast, and his possible
patients declared cured and advised discontinuance of
recovery through continuing treatment doubtful. He may
medication. The remaining have undergone and com
himself soon become uninterested in his own treatment,
pleted their Intensive Therapy. This was the encourage
losing faith in himself and his future.
ment we needed to launch the "Samagra Prayas Aarohan
Samaroh ”. from April 4 this year. The march of this steel
In the Bhilai Experiment, we acted on the premise that
township to "freedom from fear of infectivity1’ was
the process of Rehabilitation concerns both the patient
demonstrated in the "Mel-Jol’' Marathon of Leprosy
and the community, as it is the ignorant, unfeeling
patients and members of the ’normal’’ community. It was
1
a crystallisation of the dream of rehabilitation while
therapy is still on.
The uniqueness of the Bhilai Experiment in Leprosy
Control lies in approaching the problem of rehabilitation
in "reverse-integration”, that is, preventing the scars of
social rejection as the first priority, rather than letting the
patient develop this disability and then try to cure it.
Yet another remarkable approach here is based on a more
rational definition of "infectivity-free patients", one who
has undergone Intensive Therapy under MDT and is
regular in taking treatment is declared "Infectivity-Free”.
This helped us initiate early stage rehabilitation,
Preventive Rehabilitation as it were, in actual practice.
During the month-long programme, a conscious effort
was made to change the time-worn concepts that the
community had about Leprosy, to project to the
community the wide spectrum of problems faced in
rehabilitating Leprosy patients, to vividly portray to the
community the conscious choice it had to stretch out a
helping hand to the Leprosy patient in a gesture ofmutual
redemption promoting the "help process". The "Mel-Joi"
Marathon was the beginning of the campaign, attempting
social acceptance of those who were on the verge of
rejection. Seeing the still healthy—physically, mentally
and spiritually—Leprosy patients compelled the sensitive
members of "normal" society to re-examine their
prejudices, opening out promising vistas of rehabilitation
for the Leprosy-afflicted.
Members of Youth Forums, Teachers, Trade Union office
bearers, Women’s Social Organisations, Students, Sportspersons, Parents, Children, Representatives of Social,
Cultural and Religious Organisations were all brought
2
together in a series of Group Meetings. These meetings
addressed the problems of those who had ignored timely
diagnosis because of fears of social reactions to the
disease,were forcefully, even poignantly, brought home to
those who could help, those who, unthinkingly, were
themselves responsible for the problem. It is to the credit
of the community that a number of useful suggestions
were thrown up in these meetings, to be eventually
compiled into a 22-point Programme entitled "What We
Can Do".
The six-day Self-Care Practice (SCP) Camp organised at the
Gayatri Shakti Peeth also served to expose the general
public to the twin messages of "Futility of Fear of
Infection" and "Deformity Prevention in Your Own
Hands".
Patient Profiles, developed by Volunteers who were
released from other duties by the Bhilai Steel Plant, proved
to be valuable agents in the war against prejudice. Not only
did they help crystallise the problems of the patients, but
the very process helped in "zeroing” the distance between
the patient and the community, here represented by the
Volunteer, through him his family and peer-group.
The Steel Plant’s Medical Organisation took a bold step in
the direction of rehabilitation by launching a new
Corrective Service for the Leprosy-afflicted at the Bhilai
Main Hospital. Availability of eminent Surgeons from
distant reaches of the country to perform these
operations, contributed significantly to promoting the
sense of confidence essential for the success of a new
service. Around 50 cases were operated upon during the
month.
Another important feature of the Corrective Surgery
Campaign was that the BSP Hospital facilities were
provided at a heavily subsidised rate of Rs. 500/- per case.
Corrective Surgery was not seen as an end in itself, but
rather the first in a series of steps leading the patient back
to a life of normalcy. A normalcy they will have fully
attained when all of us, officially and in our private
capacities, strive together to bring these lost brethren back
into the folds of the community—offering them
honourable work opportunities admissions in schools,
treatment in hospitals where we go for our problems,
accommodations within the community. We would all
have to strive together mightily to obliterate the Leper
Colonies” housing the cured as well as the still afflicted,
the afflicted and their progeny, in a cycle of social injustice
which stand as monuments to Man’s Inhumanity to Man.
The day we have destroyed the walls around these
colonies may be marked as the day we have conquered
this dread disease—dreaded no more.
3
Exhibit
SAMAGRA PRAYAS AAROHAN SAMAROH—BHILAI
28th March to 29th April, 1988 (Comprehensive Patient-Care Programme For Effective
Eradication of Leprosy)
Programme Outline
Eventhough a person has been completely cured of leprosy and has attained Zero Level’ of Infectivity, it calls fora special
effort to remove from the minds of the people the baseless, superstitious fear which blocks physical contact or social
proximity with the ex-patients, This social barrier which exists between two identical group of people has to be razed to
the ground It is not only in the interest of the ex-patients, but in the long run, should be considered cruciaLfor the progress
of society as a whole. When the ex-patients find that non-patients are moving freely with them without keeping any
distanced the former will gain a tremendous boost in self-respect and self-confidence. It is this bbost coming from a new
sense of solidarity that will enable them to become respectable members of the society.
More importantly this symbolic but open demonstration of solidarity will encourage the patient who is in the earlier stage
of the disease, to overcome his shyness and fear of social isolation and to report to the leprosy control unit for treatment.
We present below a draft of the month-long programme developed by the Committee for approval of the people of Bhilai.
28th March to 10th April, 1988
(Fearless Intermingling)
MEL JOL
Preparation for representative participation in “Mel-JolDoud” (Solidarity for Strength Run) — a marathon wherejn
500 strong and sturdy Zero infectivity level persons with
leprosy history will intermingle with a select group of 1000
Bhilaians representing a cross section of the civic life. The
“Run” starts at 5:00 PM on 4th April from Supela Railway
Crossing and ends at Pioneers’ Monument (Civic Centre).
A« three-legged race of Patient-Nonpatient pairs, is
organised on the occasion to highlight “Freedom from
Fear” that rules the 'town now in the wake of new
understanding about the disease. It is anticipated that
atleast 500 volunteers will emerge out of this Mel-Joi
exercise.
A week long programme of Community Education
through “Activity Participation” follows the Jrally. These
educational activities will be organised by the volunteers
in different localities of the town, inclusive of the SADA
Area.
4
11th to 16th April—"SAAWADHANI”
(Preventive
Care)
•
Patients who are cured of infectivity but yet remain
afflicted by “Anaesthesia” will be brought together in two,
week-long Residential Camps where in through practice
demonstration a new awareness of “Self-Care” is
proposed to be created.
Besides treating Ulcerated Patients in these camps,
opportunities will be provided for citizens — both men
and women to offer voluntary services through giving
Practice llessons to patients in massage and other
exercises of Self-Care.
Different neighbourhoods will be managing “Cost Free
Meals” for the camping patients as well as the workers.
We invite men and women from different localities to
participate in these camps for two hours every evening.
I
17th to 23rd April—"KHOJ” (Search
Strengths to promote Mutuality of Help)
for
Patients cured of infectivity who need support from the
community for correcting their deformities would be
presented to noble Individuals, Institutions and Organi
sations to ensure a respectable worklife for them within
the society. Bhilai Hospital is launching a ' Corrective
Surgery Service” at the Hospital from 4th April, 1988 on
highly subsidised rates of operation fees. Additional
patients with promise requiring financial and other work
life supports will be identified during this week.
24th April to 29th April—"NAYA MOD”
(Launching New .Life Projects
Based on assessment of needs of Deformity Corrected
Patients, a get-together of such patient groups and willing
Adopters will be organised to develop organisational
perspectives to reach such help on a regular basis. Initially
required resource assessment will be made and a week
long fund collection drive will be launched, to facilitate
universal participation in “A Rupee For New Life Drive”.
A "Samapan” day will be observed on 29th April, 1988.
«
5
2. The risk-runners and
the drop-outs
RA Christy
Women’s group which was not on our cards so far. It
almost doubled our enthusiasm. The previous day we had
received similar response from lower middle class women
residing in the area around the LEU office. This group also
discussed about their dress for the occasion and assigned
individual responsibilities about reaching the women on
time for the marathon. Response from one you th club was
equally gratifying.
"For sure, we ll come! ... Tell us what dress we should
wear?" Some of the teen-aged girls proclaimed their firm
determination. They were thrilled at the prospect of
joining the Marathon of 4th April. The girls formed part of
a Muslim women s group from a Muslim Mohalla situated
near a Mosque in the SADA Area. Thanks to the good
offices of the Kazi of the Mosque, we could meet these
women in one of their houses. Most of them had watched
the Freedom Run’ on the T.V. They were thrilled with the
idea of running in a marathon, where other society
women will be participating.
The idea of coming out boldly in the open appealed even
to the relatively elders amongst the group. They saw in the
Marathon a good rehearsal for the march they have been
planning to protest against the acute drinking water
problem. They thought the marathon will help the women
gather courage for taking out processions and holding
rallies, to pressurise the civic administration. No wonder,
these women raised their hands when a head count was
taken of the probable participants in the marathon.
A dialogue with Muslim women came to us as a windfall.
We never anticipated that such gestures would come our
way, when we set out on our community-contacts’
mission that morning. The meeting was arranged for us in
that locality by the Kazi of the Mosque. Earlier he had put
us across two Muslim Traders, who generally employed
casual labour. One of them was wholesale Fruit Seller who
despatched Truck-loads of fruits to other market centres.
He was willing to engage about 10 cured leprosy patients
on the Truck-loading and unloading work. The other
Trader was a grains merchant. He usually employed a few
handicapped women on grains cleaning job. He looked
upon this work as a command from the Almighty Allah.
Deputy Manager
Sports Council
BSP
Bhilai
6
We were thrilled to get encouraging response from the
Muslim community, more particularly from Muslim
On the same day, in the afternoon about 100 odd women
Jobbers at the Mahila Samaj Gloves factory, enblock
expressed their desire to participate in the Marathon. This
group went a step ahead and welcomed the idea of a few
‘cured’ women leprosy patients working side by side in
their Workshop.
’
A social organisation of the Sikh community offered to
provide Sharbat’ for all the marathon participants at the
concluding point of the run'. A few other organisations
offered to arrange on the route Sweet Butter Milk’ and
Cold Drinking water. Some groups agreed to stage a
cultural evening at the Rally point. The response from the
Townfolks was mounting with every passing day.
The only uncertain factor was the size of participation of
Persons with leprosy history. We had approached many
more than the number we actually expected on the RunTrack. We were choosey while listing their names. We
wanted to present before the. society the strong’ and
sturdy’ amongst them. The paradox lay in the fact that
those who were devoid of deformity were shy to reveal
their patient identity.
In the evening the organisers met to review the
preparatories and decided to print additional 1000
Marathon Badges. They assessed the demand for Badges
to exceed 3000. The badges were priced at Re.l/-. Some of
our colleagues expressed their reservations over the
estimations on excess demand. They thought the actual
tally would not exceed 2000 mark. Our evening review
meetings never really helped us get over our anxieties
about the size of actual participation. It always remained a
guessing game till the Run’ actually started. All of us had
our fingers crossed.
As the zero hour was nearing we didn’t see anyone from
the Muslim Women’s Group reaching the starting point
Shamiana. This was specially erected for the Runners to
assemble and to wait under shade at the starting point of
the 'Run’. Neither could we see any of the lower middle
class women from the vicinity of the LEU office. Patient
presence also appeared on a low key. To compensate for
the low turn out from anticipated groups, fresh
participation of non-patient civilians was mounting. We
heaved a sigh of relief only when a special coach loaded
with patients from Dongargarh reached the starting point.
With the arrival of the patient group in sizeable numbers,
local patients who were loitering around unnoticed,
flocked together. Soon a 300 plus strength of the patient
group was seen waiting for the 'go’ signal. The threelegged race of patient-nonpatient pairs added fun.
At the Rally point the Sharbat’ provided the much needed
cooling contrast to the otherwise unbearable April heat.
The prize distribution and the cultural programme added
colour and gaiety to the buoyant mood of a unique
gathering assembled in Bhilai at the Pioneers’ Monument.
The marathon meant considerable risk for the patient
community. Absence of any identifiable marks of
deformity had provided them with a safe and secure cover
to protect themselves and their families from the prying
eyes of the community. By joining the Marathon with
flaunting a Patient Badge’, they were tearing off this
protective covert wilfully. The risks they had bargained for
had, however, opened floodgates ofcommuniationforthe
non-patient community.
The non-patient community's participation in the
marathon did not carry as much risk, though it did help to
install a massive network of communication which
operated both ways. One way across to the patient
community with an added degree of enormity of new
understanding marked by a fresh concern. The other way
it opened dialogues with the normal non-patient
community to explain their deviant behaviour. With
passing of time these explanations acquired a potency
that made massive inroads into the stranglehold of social
stigma.
While granting the contributions made by these two
components towards developing a new-wave’ communi
cation process in the civic life of Bhilai, some of my
colleagues differred in their assessment about the role
played by the drop-outs’ from the marathon by groups
like the one of Muslim women’s, and the lovyer middle
class ones from the vicinity of LEU office. My colleagues
were not prepared to ascribe them any role in the
communication process. But those of us who have had
some opportunity in the past to work with political
systems, disputed this assessment. According to them
those who acted should be looked upon as potential
‘activists’. But we should have a positive assessment of
even those who while consenting to act, and having all the
desire to act, shied away from coming in the open’ from
action, should be understood as " Fellow Travellers ”. They
were of the opinion that the letter group should receive
our special attention and be cultivated with expectations.
In any scheme of value based consolidatation of ranks’,
Fellow Travellers have critical role to play.
7
3. Understanding and
knowledge: poles apart
Rita Pali and Anuradha Ghosh
“Gives us some educational aids ... holographs,
pamphlets, posters ... and things like that ... I
mean Materials your Health Education people
use ... Rest leave it to us ... Daily we will organise
meetings in our areas and spread the “Fear not’’
message!’’ One of the women participants
responded forthrightly.
We were meeting a group of young Society
Women. This was one of those series of group
meetings which followed the Marathon of April 4.
The group of women amongst themselves
represented a spectrum of social organisations
from the twin cities of Bhilai and Durg. Some of
them were wives of Industrialists, Businessmen,
Advocates, Medical Practitioners.
“Why do you need educational aids?”, someone
from our side raised a query. “We re meeting here
without any educational aid. Aren’t we?... If Fear
Not’ is the message, won’t it suffice, if we arrange
for the presentation of four-five live cases with
different types of patches? Catch hold of their
hand and point to the patch by moving your
finger closer to it ... as we do while showing
something on a Map!’’ (Silence)
This way you’d be killing two birds with one stone
... Showing the patch and giving the Fear Not’
message through a practical’ ... Won’t that be
more effective?’’
Teacher
Sector VI
Higher Secondary
School (BSP)
Bhilai
8
For a while there was abrupt silence in the hall.
Almost pin drop silence! They looked at one
another. A spate of silent messages got trans
mitted. A broad smile on each one of the faces was
observed. Through their silence they were saying:
“You’ve caught us on the wrong foot!’’
The group volunteered to spare time for
developing Patient Profiles’ of the patients
admitted at Bhilai Hospital for corrective surgery.
Three amongst these ladies, earlier had visited
Warora, a place about 250 to 300 kms away from
Bhilai. They were keen to see for themselves the
social work being done at Anand Van’, the famous
leprosy patients’ settlement, developed by Shri
Baba Amate, his wife and others.
Our experiences at one of the Teachers meetings
at the Bhilai Public School — a prestigeous
institution of the town — were equally interest
ing. Instead of giving lectures on Leprosy, its
control measures and treatment, we used to raise
issues based on a person’s usual responses, and
highlight the lack of understanding these showed
mainly for want of any feeling for the sufferer.
After a swift round of self-introductions, the first
salvo was fired from our side. We asserted that
they were all knowledgeable about Leprosy. “You
know because you act, react and remain
genuinely involved in the processes of action and
reaction centred around fear generated in the
society, We said.
What followed was big surprise. The teachers
knew so much about the disease, its occurance,
the medium of its transimission, the medical
treatment of the disease, and its curability. As
invariably explained by many of them, source of
their knowledge remained the all pervasive T.V.
“With all this knowledge, how would you explain
the fears that still linger on you minds?” We asked.
“Difficult to reason out ... But they’re there ... No
point denying it..." One of them remarked frankly.
Social Worker
Bhilai
"Ifyou don’t mind... let's imagine for a moment...
someone dear to you like your child, developed a
patch on his/her body ... how would you react?”
"We’ll show the Child to a Doctor?”, quick came
the response.
"You mean till such time you showed the child to
a doctor you'll hold back your fear! Till such time
it’s confirmed you’ll not keep the child at a
distance, only on the strength of your apprehen
sions and doubts?”. We asked.
"Correct!” So many voices spoke out at once.
"Isn’t it true, we don’t show this patience, when
the person involved is not our 'dear’ one?”
<
Abrupt silence pervaded the Hall. None talked for
a while.
"Let’s go a step further. The Doctor after
examination confirmed that the child has leprosy!
What happened then?”, we asked to break the
long spell of silence.
'Well, different people would react differently.
First wave of reaction could be disbelief in what
the Doctor said. A desire to show the Case to
someone else.” One of the more articulate voices
responded.
Soon many more responses followed. These
ranged between ‘disbelief; unbearable shock’;
intense hugging of the child’; 'silent prayers with
closed eyes’. If anything was uniformly common
in these reactions, it was their all peivasive
genuineness.
This tempted us to ask one more question: "How
would we behave with that child on returning
home?
Would we scold? Would we threaten him/her of
desertion?
Would we take immediate steps for the child’s
segregation?
Would we ask other children to stay away from
him/her?”
Once again there was silence in the Hall. Soon we
all got up to go. Perhaps the answers were too
obvious!
There was major participation of the Teachers
from this school in the Marathon.
After women’s groups and teachers, we turned
our attention to school children — the younger
generation. Because of the odd month we had
chosen for the Aarohan celebrations, our access
was confined to only English Medium Schools.
The Hindi Medium schools were in the midst of
their annual examinations. Three different
competitions of different dates were organised for
this group. The participation the way it
materialised, was veiy encouraging. The eligibles
for the competitions were students from KG upto
12th Standard. Even students from the Russian
School took part.
The prize distribution function on 23rd evening
brought together more than 400-500 parents.
They came alongwith their children at the
Gayatree Shaktipeeth Hall. That was the conclud
ing day for the Self-Care’ Camp as well. The big
hall proved too small for the occasion. Nonethe
less, it once againt provided an occasion for
Bhilaians to mix and jostle together with patients
who had attended the "Camp”.
9
Exhibit
Competitions for Children
On the Spot Drawing & Painting Competition
About 355 boys and girls participated in this event. Even
though no themes were given for this event, as many as 50
children painted on themes related to leprosy eradica
tion. Sixty sjx participants deserved prizes. A panel of
three judges declared the prizes. The panel members
were: Shri Mahesh Chaturvedi, Shri Papa Rao and Mr.
Vassilo, the Russian Artist.
Essay Writing Competition
Five themes were given for writing essaiys. The
participantage-group ranged from 6 to 17 years. 149 boys
and girls from 19 schools participated. Judged by the
contents of the write-ups, it appeared the message of the
Marathon had reached far and wide into Bhilaian
households. Forty deserving candiates received the
prizes. The panel of judges comprised: Dr B.P. Mukherjee
— CHO, Bhilai; Dr. P R. Mangalani — M.O. LEU (SADA
Bhilai); Dr. (Mrs) S. Deewan; and Dr. Ms. Runu Chatterjee.
Messages & Slogans Writing
Thirty five candidates participated, one of them was even
a teacher. 12 slogans in English and 27 in Hindi were
composed. The messages conveyed by the slogans
basically covered two themes : (i) Leprosy is not a disease of
only the body of the patient but of the mind of the Society
as well; and (ii) The disease is curable.
Some of the striking slogans, both in English and Hindi
and the commendatoiy contributions with names of the
respective participants are given below:
Student’s Slogan Composing Competition Results
10
Slogan
Name of Composer
School
1. Wherever you take care, Leprosy cannot remain there.
Abhishek Chandra
E.M.M. Sector-X
2. Shake off hear. Leprosy is cured by socio-medical care.
Shonli Sengupta
E.M.M. Sector-X
3. Don’t fear, come near. Treat Leprosy my dear.
Geeta Manglani
E.M.M. Sector-X
4. For cure of Leprosy, we should fight but certainly not hide.
—do—
—do—
5. Eradicate Misconceptions and hatred, Leprosy will vanish.
Sanket Mathur
E.M.M. Sector-VI
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4.
Raffi’s reluctance
Shantilata Varma
My father was in the Orissa Medical Service. I distinctly
remember when he was offered the post of Superinten
dent at the Leprosy Home & Hospital in Cuttack, everyone
tried to dissuade him from accepting the job notwith
standing the promotion it entailed. The Superintendent’s
quarter was just adjacent to the Leprosy Home. That it was
on the banks of the river-Mahanadi, with plenty of open
space around, gave little solace for the detractors. Would it
not be risky for the family members to live so close to the
infectious patients? A query which came naturally to
everyone’s mind. Father explained to us that leprosy was
not as contagious as was generally feared.
interesting case. He originally belonged to Khandesh in
Maharashtra. There he owned a large landed property;
and also had an urban housing property in yet another
district in Vidarbha. After leaving his hearth and home
nearly 25 years back, he had gone to the leprosy hospital at
Baitalpur. From there with a ‘Cure’ certificate in hand, he
moved on to the Hospital in Raipur. And from Raipur to
the self-settled colony in Shardapara.
With great reservations we moved to Cuttack.
His brother’s son nowadays writes to him most
affectionate letters. He pleads with Mohammed Raffi
saying: "Now things have changed. Sure-cure medicine is
available. Government has made arrangements to reach
the medicine to patient’s door-steps. We see so many
patients getting cured and returning to their homes.'Why
don’t you come back? We assure you none of us will feel
embarrassed of your presence. Neither will we or our
children make you feel embarrassed. I am sure in Bombay,
plastic surgeons will correct deformities of your nose.
Even your eyes could be put back in good shape. Please
write to us of your plans to return home. We shall come
and bring you back.’’
Over the years, medical science has made tremendous
strides. Now leprosy can be made non-infectious within a
couple of weeks; and cured in just three to six months.
Only in certain cases it takes two years. The treatment of
the disease has now become simple, and easily accessible.
Reconstructive surgery can rectify the deformities as well.
Yet its dread continues unabated.
We lived in Cuttack for about ten years. Every year I saw
several patients being cured and discharged from the
leprosy home but not many returned to their families.
They preferred to stay on in a settled colony nearby called
“Gandhi Palli” which was situated on the banks of
Mahanadi. It was very close to the Leprosy Home &
Hospital from where they were discharged earlier. Here
they lived virtually cut off from their families and friends.
Secretary
Bhilai Mahila Samaj
and
Member, SPAS
Bhilai.
12
Not that it happened only in Cuttack. It is a universal
phenomenon. Here in Bhilai, Shardapara Leprosy Colony
is settled mainly by such cured patients who avoided
returning to their homes. One of the inmates ofthis colony
— Mohammed Raffi, who has an utteriy deformed nose,
finger contractures and cornea problems of eyes, is an
He has one brother and one sister. His brother’s sons are
highly placed in Government Service. After the death ofhis
sister’s husband, he held power of attorney for her
property as well.
Mohammed Raffi has been getting such letters from his
nephew with increased frequency in recent months. Still,
he had opted to remain here as an inmate ofthe Colony in
a 8’xlO’ makeshift hut. Every Friday he is seen in front of
the Mosque. Routinely a few chosen families give him
“alms” adequate for the week.
One has to go and see how clean he lives; and how clean
he has kept his hut. He eats well, drinks enough milk.
Prays regularly five times a day. What’s it that prevents him
I
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from returning home? Or what’s it that holds him back at
the "Colony”?
phenomenon. It involves shaping of social environment .
which is in close proximity to the person’ in the patient.
Mohammed Raffi’s problem is, indeed, confounding.
Social organisations interested in rehabilitation work tend
to look upon the problem as one involving "‘Relief’ to those
who are drowned in despair and destitution. It is like
fighting fire by bringing in Fire Tenders. More challenging
job in leprosy is prevention of seeds of hopelessness from
germinating. Leprosy patients suffer real shock when they
are diagnosed as leprosy cases. The p'atient rejects
himself. Social acceptance at this stage can neutralise the
sense of dejection. Mohammed RafB’s reluctance to
return home highlights the permanent character of shock
he received in early stages. Social organisations may have
to change the focus of their rehabilitation work to one
which has basically preventive overtones; and which
begins with the first shock the patient suffers at the
diagnostet stage.
The workers of the Bhilai Mahila Samaj Gloves Production
Unit were asked whether they would like to work along
with leprosy-cured patients in their Unit. They unani
mously responded in the affirmative. Unfortunately the
definition of leprosy ‘ cured’’ persons as given by medical
science and as believed and accepted by the society
differs. This difference will persist so long as non-patient
groups do not come forward and accept “cured” patients
as co-workers at work places.
Doctors, also, can play an important role in protecting the
patient from such early stage psychological devastation.
They have not fully appreciated the fact that before taking
anti-bacterial measures they have to guard against
possible fall out from social and psychological factors.
Leprosy treatment is not a patient centred clinical
When a person with leprosy history ceases to be an
" infectivity risk ” to others, he or she should remain as
welcome in work groups as any other person without
such history.
Real problem in such mixed-group work situations would
be not so much the reservations of non-patients, as the
feelings of social awkwardness experienced internally by
the persons with leprosy histoiy. Mohammed Raffi’s is not
a solitary case. It represents a generality. Unless deliberate
efforts are made by socially conscious persons to promote
“mixed-group ” work, it is unrealistic to expect Raffi to
return home.
13
B
I
I
I
r
was devoid of unsound beliefs, socially hurting
prejudices, and selfishly protective social behaviours. In
effect devoid of such behaviours which denied selfrespect, dignity, and freedom of action to the persons with
leprosy history.
The 4th April Marathon emerged more out of a conceptual
state. But the arms stretched for the open embrace by the
non-patient community, perhaps, remained a reality of
permanence. Options before persons with leprosy history
were clear. Either to welcome the gesture of embrace’ and
seek a breakthrough in the social isolation; or to
perpetuate the agonising state of ignoble existence.
It was, however, difficult for them to suddenly pull
asunder the early cobwebs of feelings of social
awkwardness; and to ignore the fears of ever hanging
threats of possible onslaught of disabilities. More
particularly because the latter were independent of
bacterial activity. Was it at all safe for this group, then, to
reveal their patient identity mid-stream; and risk social
prospects of their families? Even the organisers of the
Marathon did not have clear answers. The answers
depended on depth dimensions of the embrace’. Its
spillover on other social practices. Persons with leprosy
history were really put on the horns of a dilemma.
Whether to reveal the patient identity and face unclear
future or to conceal it and perpetuate the isolated, ignoble
existence.
The dilemma surfaced aptly when one smart aspiring
young man, one M B Case on the treatment register, came
forward to join the marathon. He was full of hope of
winning the prize announced for the fast runners. “I shall
run and win the prize. I am sure... But nobody known to
me should be seen around ... Or else give me a non-patient
Blue Badge”, the young man implored. It was obvious! He
kept away from the marathon.
16
The smart young man’s hesitations were characteristic of
all those strong and sturdy amongst the patient
community who easily passed off as non-patients in the
eyes of the Society. Originally the organisers of the
marathon had anticipated sure participation by at least
500 from this group, against a possible participation of
1500 strong normal (non-patient) group. But on the
marathon day only 300 showed up from the patient group
as against over 2000 from the latter. Even to get these 300
was a herculean task for the organisers. More than 50 per
cent of them came from the countiyside of the two
neighbouring districts. The fact that at least 100 came from
the township, may be considered a major achievement. To
reveal one’s patient identity in front of a familiar group
was, indeed, a difficult proposition. But that there were
persons with leprosy history who either had lesser or no
hesitations in revealing their patient identity in front of
local social groups are*a data of great significance.
Revealing patient identity was particularly problematic
with women. Very few from the township participated.
Sale proceeds from the Red and Green ribboned badges
did not provide data on sex composition of the
participants.
In striking contrast the patient group that came from
Dongargarh, traversing a distance of about 100 km.>
presented a more encouraging picture. 19 were women
out of the 62 persons who participated. Only 7 were PB
cases and 2 were with RFT classification; 23 had MB
classification to their credit. The group traversed the
distance in a chartered bus, subscribing to the commuting
charges on an average @ Rs. 10/- per person. The diesel
costs (approx. Rs. 360/-) were donated by a local
philanthropist. How this group would have behaved in
front of local social groups in their respective areas can
only be an inference at this stage. But the fact that they
t
r
B
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I
B
»
B
>
B
B
B
B
B
t
I
I
came by paying for their journey, is a sufficient indicator of
their level of motivation and also of the depth of the
fieldworkers’ rapport with the patient community.
r
Any attempt to draw conclusions by comparing the two
sets of participatory performances will not serve any
purpose. It would be inappropriate too. The purpose that
this data can best serve is to reinforce two sets of
conclusions. One: developing openness in social beha
viours of such persons with leprosy history but without
any outward identifiable marks, is possible. Two:
openness blossoms easily, when confronted with stranger
groups.
Whether “openness” can be depended upon as an
effective tool for reducing stigmatisation is a question that
can be examined through assessing outcomes in Bhilai.
The “Solidarity-Run”, indeed, administered a forceful
push in favour of open' relationships, between the two
components—the persons with leprosy history and the
normal (non-patient) civilians. The bold action on part of
the non-patient participants did receive social apprecia
tion in a broad sense. The marathon participants, though
were not hailed as heroes, did hot receive scant attention
either. None criticised them. They generated enough
curiosity even during the preparatory stage. Maybe
because of the element of novelty. But the post-marathon
period stir-up witnessed in the social environ of the town
gave sufficient proof of the seriousness with which this
noyel idea of influencing social behaviours of an urban
community was received. The unending stream of group
dialogues that followed this event and spilled into
subsequent weeks, came handy as an effective tool of
action-oriented community education.
During the course of these discussions, scope for action
was earnestly explored. It was on the basis of suggestions
received during the course of these dialogues only the “16
point” handout titled “What Can We Do for the Afflicted
Ones?” was evolved. This handout was improved upon
subsequently. The improved version became the launch
ing pad for the Rupee for New Life Drive' in the third week
of the Aarohan Programme. These explorations in action’
avenues for participation, were of immense significance to
Leprosy Eradication Prorgamme. It was these action
avenues that carved out a wide variety of Roles for
individuals as well as for the community.
The patients who comprised the 300 strong group in the
marathon, similarly can play important roles. They can
function as shock absorbers for fresh cases. They can serve
as harbingers in getting, across mixed-group work
opportunities. They can also function as vital links in
developing patient-to-patient communication through
granting a cherishable identity to the total patient
community. Can we hopefully develop around them a
respect evoking identity? A challenging task, indeed!
17
I
Exhibit
Forward with "Acceptance” ... and Down with "Incongruities”*
Rupee For New Life A Gesture in Mutual Redemption
The Rupee you are contributing means much more than
money. It is a token of appreciation of the social problems
which a Leprosy Patient encounters from day one. Your
Rupee signals your desire to restore to him respectable
socio-economic existance; and to arrest his drift towards
despair and dejection.
The work opportunities so created will be for mixed
groups of leprosy afflicted and non-afflicted persons
outside the four walls of leprosy colonies.
Your Rupee is not expendable. It will be utilised as
recoverable revolving fund, as “seed money” meant for
rotational use.
Your Rupee remain^ in safe, credible hands. It will be
deposited in the Bank Account to be operated under joint
signatures of the Chairman and the General Secretary.
Your Rupee will be utilised to promote early stage
supports to leprosy afflicted persons through restoration
of respectful work-life at multiple points in diverse areas of
economic activity. More particularly for creating "mixed-
While making your Rupee-contribution, please tickmark
on the counterfoil in the Receipt Book your willingness to
participate in any of the programmes listed under
"A^charan” list “A”.
group” work opportunities which will match with
handicapped skills/capabilities.
*
AACHARAN LIST
1.
Support for School Going
Children of Deformed
Leprosy Patients
2.
Financial Help to Patients
Under Surgical Treatment
3.
Absorption in Mixed-up
Group Based Work-Life
Based Work-Life
4.
Social Acceptance
5.
Time Donation
a. I would like to offer
scholarship.
18
a. I would like to donate with a. I would like to offer
a. I would have no hesitation a. I would like to: Extend warath
Corrective Surgery Fees for
apprentice training to
in purchasing products
and affection to Hsopitalised
for Leprosy afflicted persons.
but disabled leprosy
produced or sold by
by visiting them with flowers
afflicted persons.
disabled persons.
or fruits during visiting hours.
b. I would like to pay
1b. I would like to mobilise small b.
I would like to accept b. I would not object to
b.
Offer at least two hours for
School Fees and SchoolI
donors, who would together
cured persons for work
cured/deformed leprosy
interviewing hospitalised
Uniforms.
contribute towards operation
in my garden/
afflicted person staying
patients to develop patient
fees of a deserving Leprosy
workshop/home.
in my Neighbourhood.
ease-studies.
Patient.
c. I would like to adopt c. I would like to mobilise small c.
I would have no
i I would like to massage c. Give one day in a month
c.
a promising
1
boy/giri to
contributors from my friends’
a 'cured' but disabled
patients in Self-Care'
towards removing misconcep
facilitate his/her
circle/neighbourhood who
leprosy afflicted person,
Camps. .
tions about leprosy through
growth.
would jointly offer to feed
leprosy affliced person.
collecting Case Histories of
patients in Self-Care' Camps.
patients where presence of
one MB Case in the family did
not spread infection to other
members;
*
1.
Support for School Going
Children of Deformed
Leprosy Patients
2.
Financial Help to Patients
Under Surgical Treatment
3.
Absorption in Mixed-up
Group Based Work-Life
Based Work-Life
4.
Social Acceptance
5.
Time Donation
Cases of persons with leprosy
history and physical handicap
was accommodated in the
work group by other non
patient co-workers;
d. I would like to contribute
towards the cost of MCR
protective chappals (approx.
Rs. 50/- for preventing ulcer.
d
d. I would like to adopt a
person with damaged
nerves to promote regular
practice of ‘Self-Care’
e. Provide goggles with tinted
lenses for eye-affected
patients. (About Rs. 50/-)
e. I would like to encourage e Person with leprosy hisotory
marriages of young boys
who bravely fought his battle
against the disease success
and girts who are un
scathed by the disease but
fully and led a life which
earned for him a circle of vocal
family, through either
attending their wedding or admierrs.
by inviting them for dinner.
f.
I would like to provide adap
tive tools for avoiding injuries
to anaestic fingers.
You may also like to tickmark on the middle slip in the
Receipt Book any of the five social behaviour from
Visarjan”. List "B ' indicating your determination to part
company with your past practices.
VISARJAN" List B
Since I know that:
• Leprosy does not spread either through skin to skin
contacts or through heredity:
• Leprosy does not affect 98% of the population;
• Patients taking regular treatment do not transmit the
disease to others; ,
• Deformitv or disability is not indicative of active disease
but of presence of anaesthesia or nerve paralysis;
• Leprosy afflicted persons with Begging Bowls are
perpetuating Social Stigma;
I consider it my bounden duty to give up:
1 My early practice of giving "Alms" to beggars who sit in
front of places of worship.
2 My reservations about my children studying and
playing along with children of leprosy patients.
3 My objections to working alongwith persons with
clawing hands or absorbed fingers.
4 My early objection to non-infectious leprosy persons
being admitted to General Wards in Hospitals.
5 My early hesitations in eating and drinking in the
company or cured leprosy persons.
SAMAGRA PRAYAS AAROHAN SIMITI
S. Balkrishnan,
DGM, BSP
Chairman
Dr B.P. Mukherjee
C.H.O. Bhilai
General Secretary
19
7. New life for whom
Ajaykant Bhatt — Vijay Bhatt
L
j|
It was Saturday evening. Samiti Orga’ risers were
discussing amongst themselves, next day s
volunteers’ meet — which was convened to
consider organisational details of the 4th and last
week’s Aarohan' Programme. The ‘Week’ was
devoted to a novel Drive titled A Rupee For New
Life’. Gayatri Shakti Peeth Hall soon started
flooding with people—men, women and child
ren. That was the day, two weeks of activities
centred around Self-Care’ camp, were coming to
a close. We had put up a small poster —
exhibition on leprosy in the interest of the
anticipated large gathering of the people.
Looking at the response from people to this
exhibition, one of our colleagues remarked: “Why
didn’t we put up such exhibitions in crowded
places like sector VI market, earlier? ... It’s so
informative.”
Are we out to spread information’ ... or to
promote action ?” Another colleague who was
a sceptic about such exhibitions questioned.
“How do you expect people to act’ without
information and knowledge?”
"Come on tell me: What action’ you expect
from these people, who will go back home well
informed?” The sceptic continued.
“ Well! Not to get scared when something like
leprosy appears ... To approach a doctor
boldly, when in doubt!” Prompt came the
response.
Asst. Chemist
B.C. Lab.
BSP
Bhilai
20
The Sceptic burst out with laughter and
remarked: “That’s the paradox in leprosy!”
Indeed, that’s the dilemma promoters of
knowledge’ get lost in. What is logically sound
and plausible does not turn out to be so. The scare
is deep rooted. You cannot keep away the scare of
‘ ghost’ haunting the child’s mind by exposing th6
child to some pep talk which seeks to proveghost
as a mystical notion. While simultaneously not
preventing exposure of the child to 'ghost stories,
day in and day out. Scare of ghost can be
effectively exorcised by leading a children’s
march into a place haunted by ghost in the public
eye. The scare’ about leprosy is in no way
different. In leprosy only two amongst the 100
would have had reason to approach the doctor,
the rest 98 vie with each other in spreading ghost’
like myths, about the disease which cause
devastating scares. There was no other way to
counteract such scare (which has its origin in
overconcerns for self-preservation) except to
storm the citadel of the very sources of the fear.
In Bhilai we just stormed the fountain source of
the myth called “infectivity risk’; and stole a march
on it by putting in the vanguard the “risk
subjects'—the ’98 percents’. The “Marchers’
raised a warciy Action’, not “Exhortations’. Scope
of several actions was examined through face to
face dialogues. A wide variety of groups in the
town participated in these dialogues. Two
separate lists of action steps were developed —
the “Aacharan Hist” and the “‘Visarjan list”.
Together these promoted a new understanding
not so much about the disease but about the
plight of the victims of the disease. The “Actions’
that were proposed were focussed on the
problems of the patients. Problems largely
Raw Material
Inspector RMP
BSP
Bhilai.
■F
created not by bacteria or anaesthesia, but by
the’98 percents’.
We had an ambitions plan. We wanted to reach
with the Aacharan and Visarjan’ lists, as many as
50,000 people — approximately 10 per cent of the
'town’s population. They were to exercise their
choice’. The job was to be accomplished just in
two days. It was a response seeking job. Meet a
person. Listen to what he has to say. Enter into
dialogue. We were to be opinionless. We were
never to argue. Never to impose on the person
approached, our point of view. We were
attempting a novel way of opening a communica
tion. The terminal point of which was action . We
wanted to understand on which of the problems
of leprosy patients, the other person thinks he can
act. There was no scope for thought which did not
end in action.
We anticipated that one volunteer would cover a
maximum of 50 respondents in two da^s. The
programme thus created a demand for 1,000
volunteers. Twenty (organisers were to mobilise
such large volunteer strength.
However, what we could actually accomplish was
hardly one fourth of this gigantic organisational
feat. Not all volunteers covered the response data
properly. It appeared the volunteers who could
not get tuned to our way of thinking, almost
converted the entire ‘mass-contact exercise’ into a
Rupee Collection Drive’. What was feared, thus,
came true.
In all fairness it must be granted that at least some
of the organisers did not either falter or deviate
from the original blue-prints. The response they
got covered a wide range of reactions. At one
extreme they received blunt negative reactions
like: “We don’t believe in this nonsense!’’ “We have
no time ”. “It’s all a waste of time and effort”. “It’s
all tom-foolery!’’ Such varied reactions, also, came
our way. But they were only a few.
Responses came forth seriously where we had
personal relationship with the person approa
ched. Some responded negatively, some posi
tively. Bdt in their intentions, both were genuine.
What they could not understand was our
insistance on Only One Rupee’. “Why not ten or
twentyfive?” They asked.
Irony crowned this momentous push’ on
community education. In the audit’ session on
the last day. By and large we indulged in assessing
our performance in terms of money earned; and
not by the quality and character of the. Jfeedback
that we received from the community. A feedback
which in turn had created demand on our
energies to convert these responses into live
channels to promote in-group-absorption’ of
persons with leprosy histoiy.
The caselet Return of the Prodigal Son’ speaks
enough and answers the poser: “Who Needs New
Life?’
21
Annexure
Mohan’s embarassment
Mohan must have been hardly 15. He was
studying in 10th class in a local government
school. His father, Abhimanyu, had been suffering
from leprosy for the past many years. That wav
Mohan was bom as son of a leprosy patient. The
family was part of the Shardapara Leprosy Colony
(Bhilail now. Though it was being settled since
1958 onward on barren land adjacent to a grave
yard. With pressure on space typical of any urban
settlements, it has become part and parcel of the
new town. In 1981 a 6 ft. high wall had skirted the
settlement. None knew who was being protected
by the wall! Still murkier was the issue: what
treasure was really being protected!!
I was engaged in discussions with Abhimanyu.
We were sitting in the open in front of the house of
one of the early founders of this self-settled
colony. Abhimanyu almost lost his temper at me
in response to one of my queries: “Why can’t you
give up begging? I understand your crippled
limbs have handicapped your work life ”. For a
while I paused. I could see anger on Abhimanyu s
face, with no sign of abatement. Once again I
continued: “Tell me are you prepared to operate
one of those Cycle Stands in front of the Cinema
House? ... That'll take care of your bread.’’
“It's hot only break!’’ Losing his cool once again,
Abhimanyu almost shouted at me. “My three
children are studying. Who pays for their fees?
It’s easy to run down beggary! ... Difficult to face
life as I’ve faced!’’ He looked into my eyes with
contempt pouring out from his face. “See this boy,
I am anxiously waiting for his return from school.
Was it not me who saw their education?’’
22
As Mohan reached the spot where we were
sitting, Abhimanyu showed his inclination to go
home leaving our discussions half-way through. I
insisted and made him stay on.
Initially Abhimanyu had lost his cool with me
because I had brought a fruit loader's job offer for
his able bodied non-patient companion—Dukhiram—who helped him draw his “push cart’’ on
the daily begging errands. On an average they
earned between Rs. 50/- and 60/- a day. -These
earning were shared equally, between the two.
Dukhiram had already rejected my piece-rate
based job offer saying: “What happens when
there’s no work or less work? I suffer, don’t I?”, he
had asked. “I better continue with Abhimanyu!”
Saying this Dukhiram had left the scene.
Mohan by now had reached closer. I asked
Mohan to come and sit in front of me. As he sat, I
asked him: “Beta, don’t your friends at the school
ask you about your father? ... about what he is
doing?”
“Sometimes they do!”
“Then what do you tell them? ... They must be
asking how your father earns his living?”
Mohan hung down his head and started running
his finger through the soil on the ground. When 1
repeated my question, still keeping his head
down he said: “Without saying anything I get up
and go elsewhere. I’ve avoided replying to this
query all these years.” Mohan’s voice was choked
as he uttered the last words.
I
Sensing the internal disturbance Mohan was
facing, I looked at Abhimanyu once again rather
piercingly. Turning to Mohan I asked: “Mohan,
you tell me: are you good in your studies at
school?”
He looked up and affirmatively nodded his head.
Encouraged by this response, I asked: “Come on
tell me! What you want to be in your life?” There
was a total silence. All those 15-20 inmates of the
colony who were sitting by our side also observed
total silence. They were anxious to hear what
Mohan had to say.
"I want to study Computers!” Mohan broke the
silence.
Everyone around looked at each other in utter
consternation.
As I patted Mohan with considerable warmth, I
looked in the direction where Abhimanyu had
parked himself. But, alas! He had already left the
place.
23
8. Stainless steel tumblers
Arun Gupta and Mrs Illa Dutta
Bhilai made histoiy during Samagra Prayas
Aarohan Samaroh largely because of 4he heart
warming response received from several social,
cultural and religious organisations of the Town.
We were in search of a suitable place to hold the
two-week long Residential Self-Care PracticeDemonstration Camp. We required a place which
was clean, central, frequented by people,
adequately accommodious and also available for
round the clock use spanning over a fortnight.
Various possible sites and proposals were being
examined.
A suggestion came forth about the Hall belonging
to Gayatree Shakti Peeth Trust. We thought the
place was ideally suited for the purpose. However,
some of us were apprehensive of the likely
response from the Management of the Trust. It
was our experience so far that places generally
used for marriage ceremonies remained beyond
our reach for holding functions which involved
leprosy patients.
Dy. Manager
Sports & Recreation
Council
Bhilai Steel Plant
and Member, SPAS
Bhilai.
24
Last year in Dongargarh, a town known for its
philanthropic traditions, a famous Community
Trust refused to hire out even its utensils for the
use of campers whose ranks avowedly included
leprosy patients. In fact, we were desirous of
hiring from the Trust about 150 stainless steel
tumblers for ten days. The Trustees who were
highly appreciative of the noble cause for which
these were required, expressed their helplessness
in hiring out utensils from the Trust’s stores. They
apprehended strong, adverse reactions from their
clients, if tumblers used by leprosy patients were
re-mixed with total inventories ofutensils used by
marriage parties. Alternatively they offered to
collect contributions and donate newly pur
chased 150 stainless steel tumblers to the patients
on take home basis.
The proposition remained tinacceptable to the
Organisers of the Camp, even though what they
would have spent oq hiring charges came to
about 20 per cent of the cost of the tumblers.
With this Dongargarh experience at the back of
our minds, we decided to approach the Gayatree
Shakti Peeth Trust only for provision of
accommodation; and not for any of the Trust’s
utensils. Some of us, however, had questioned the
appropriateness of this decision which meant
submission to responses which were segregatoiy
in the ultimate analysis.
The Trust acceeded to our request for accommo
dation without any hesitation. MaybfSThey were
aware of the debate that had preceded, in our
organisational committee meeting eariier. Our
request covered only accommodation.
The Self-Care’ Camp was primarily directed
toward practice demonstration of simple, easy to
practice methods of preventing and arresting
deformities in leprosy patients. On the first day
the group of about 60 campers were received by
the Trust Management with beaming faces and
folded hands. We were rather taken aback by such
warm reception, despite the fact that our group
inluded 14 men and 21 women with obvious signs
of deformities.
We hardly realised then that more surprises were
in the waiting. At the strike of lunch hour as we
Social worker
Bhilai
were busy washing the 'Pattals’ and Donas
(makeshift dinner plates and bowls made out of
tree leaves), the Trust Manager opened the store
room and brought out an array of stainless steel
utensils. These included the ‘Stainless Steel
Tumblers.’ as well. He asked how many did we
need. Drinking water tumblers, small bowls for
serving dal, and dinner plates. "We have all
stainless sets ”, he said and counted sixty pieces
of each category for handing these over to the
camp organisers. "Use these as long as you are
here... Keep in safe custody and return only when
your camp is over”, said the Manager. "One of our
volunteers will stay with you all through, to look
after your needs and comforts. Please don’t
hesitate ... he is there to serve you”, he added.
These surprises, one after the other, ushered in a
new wave of enthusiasm amongst the camp
organisers.
Nonetheless certain other subtle reservations in
inter-mixing with patients, did creep in. We are
sure these could not have escaped a keen
observer’s critical eye. Joining the lunch in
second shift — after the patients finished their
eating. Opting to join the Serving Batch' rather
than sitting with patients and eating with them.
Sitting in separate rows under the pretext of non
availability of space in the patients rows.
Practically all of us were guilty of avoiding
unreserved intermixing with patients during
lunch and dinner sessions. Unlike other camps in
rural areas our eating-place behaviours here
reflected more of hesitancies and reservations
than warmth and understanding. Indeed, these
behaviours had nothing to do with either ‘rural’ or
urban’ settings. It was a product of laxity shown
in practising the 'stay together’ character of the
camp.
But this did not deter them from introducing a
practice of not mixing the utensils used by
patients with the ones used by the System
Workers. Patients were asked to keep their
utensils in their own personal custody. Only the
utensils used by the workers and organisers were
pooled together after use.
Despite such managerial shortcomings, opera
tion Of the "Camp’’ from the central place like
'Shakti Peeth’ turned out a powerful medium of
community education for social action. Besides
exploding the myth of infectivity, the camp
practicals for the first time, highlighted the
preventive-action dimensions of deformity/dis
ability control which the patient and his wellwishers could act upon easily. No wonder the
concluding day witnessed intermixing extra
vaganza. About 500 to 600 socialites, both men
and women who ostensibly were attending a
prize-distribution ceremony, joined the campers
in the evening hours and intermingled with the
patients without reservations.
There were critical comments on this subtle
discriminatory practice.
This practice had to be discontinued during the
second week of the Camp, as a sequal to the
debate that raged amongst us throughout the
week. Next week saw pooling of all utensils. This
resulted in more scruplous monitoring of utensil
cleaning practices.
25
/
A large number of social and cultural organisa
tions of the town had come forward earlier to
express their solidarity with the cause, by offering
to make cost-free feeding arrangement for the
campers. The response was rather overwhelm
ing. Not all those willed to extend their hand
could be accommodated within the restricted
schedule of 12 days. List of the organisations who
thus participated is given below:
Programme of cost-free feeding arrangements
by Socio-Cul tural & Religious Organisations.
Location—Gayatri Shakti Pe eth, Sector-6, Bhilai
11.4.88 Sanatan Dharma Sabha
— Breakfast; Lunch; Dinner
12.4.88 Mantri Stores, Sector IV
— Breakfast
12.4.88 Smt. Ranu Chatterjee
— Lunch
12.4.88 Shri S.L. Soni
— Dinner
13.4.88 Bhilai Nagar Kalibari
— Breakfast; Lunch; Dinner
14.4.88 I.N.T.U.C., Bhilai
— Breakfast; Lunch; Dinner
15.4.88 Adarsh Sanskritik Mandal — Breakfast; Lunch; Dinner
16.4.88 Gayatri Shakti Peeth
— Breakfast; Lunch; Dinner
18.4.88 Classical Club
— Breakfast; Lunch
18.4.88 Jan Kalyan Samiti, Maroda — Dinner
19.4.88 Roman Catholic Church
— Breakfast; Lunch; Dinner
20.4.88 Malbi Nagar, Durg’
— Breakfast
20.4.88 Guru Singh Sewa
— Lunch; Dinner
21.4.88 Sangarfi Dairy
— Breakfast; Lunch; Dinner
22.4.88 Baba Saheb Ambedkar
Samiti
— Breakfast; Lunch; Dinner
23.4.88 Uttar Bharfat Kalyan
Samiti &, Maharaj
Surajmal Samiti
26
Some of these organisations additionally offered
to pay for medicines to leprosy patients. The
Sat sang has expressed a desire to adopt students
of leprosy patients; and even to assist their
parents in organising marriage functions of their
daughters. On condition that no dowry transac
tions were involved. The local Roman Catholic
Church welcomed requests for MCR Chappals
and Goggles for lagophthalmos patients. There
were some offers from individual members as
well. These included space for installation of
Stalls and provision of light work for cured
leprosy patients as Gardeners and household
servants.
— Breakfast; Lunch; Dinner
fOi
’TV
■rO
'^1
A
^■^41 ?'■■ ■
'f
I
■
Zeroing Distances
Children's imagery? Beggar in Push-Cart syndrome I Bhilai beamed new
messages... Compassion, Charity... old hat now! Re-examine prejudices,
instead. Stretch out helping hand in a gesture of mutual redemption!
r 1-
Idealising “Endeavour”
Arousal of man's positive self-concept in
relation to his social environment
remained the central theme in training
for attitudinal change. Freedom to learn
through explorations and exchange of
experiences with other members of the
group while examining 'Live Cases;
became handy tool for self-learning.
Acceptance tempered with
expectations became the strategy for
promoting responsive endeavour.
I
iff
' / t
9. Nursing the group identity: critical
factor in leprosy patient care
T.S. Natarajan
Former
Programme Officer
Health Education
DANLEP
I had the privilege of participating in the preparatories of
stigma represented not so much a prejudice or distortion
Mel-Jol Doud — the Solidarity Run in Bhilai during April
of facts, as an utter break down of inter-group
last. The Bhilai programme represented ■ a step by step
communication between the patients' and the value
build-up. of mixfed-group-techniques’ of patient care’.
infusers’. Rarely has it been realised that restoring or
These techniques and methods were tried and tested
reviving channels of inter-group communicatiofibetween
earlier in a rural setting in Madhya Pradesh, since March
these two components was as critical to patient care’ as to
1987. Underlying these new methods was a basic premise:
developing suspicion-free or scare-free social existence for
"Unlike in other general health care practices only patient
the non-patient community. Never have we cared to view
or patient-family centred and medicare oriented ‘clinical’
the Health Educator Role as Facilitator for reviving and
methods and approaches, have inherent limitations in
restoring such communication between the patients’ and
promoting Patient Care’ in leprosy. Here ‘patient care’
the ‘value infusers’ in the society. Instead we appreciated
remained intricately interwoven with the three arms’ of
this role as one of message-giver’ or educator’.
the Care Triangle’ viz. the patient and his family’; the
Blue Prints of social action in Bhilai projected a major
value-infuser’; and the treatment provider’. While
sweep away from these conventional formulations.
initiating these mixed-group-techniques ’ we had further
Instead it was aimed at reviving such patient’ — valueassumed that the quality and character of‘patient care’ in
infuser’ intercommunication as a major task. The almost
leprosy depended on the
total isolation of conven
quality and character of the
tional and operative cha
interaction’ that emerged
racter of medicare-based
Never have we cared to view the Health
in the local communities
intervention in the com
Educator Role as facilitaior for reviving, and
between
these
three
munity, was made possible
arms’.’’
restoring such communication between the
in Bhilai mainly because of
'patients' and the 'valve infusers’....
Conventionally the provi
the radical definition of
der system has tended to
infectivity-risk-free’ person
view the ‘patient’ and treat
with leprosy histoiy. Such
ment-provider’ interactions as purely bilateral pheno
isolation, though notional, helped put the ‘value-infuser’
menon. Secondly, it had erred in considering the ‘third
in a key reverse role. And a fair trial could be given to the
arm’ (the ‘value-infuser’) as an adjunct which called for
influence of restored communication.
dealings independent of medicare programming. The
The 'social stigma’ indeed, needs to be appreciated
‘value-infuser’ component was never recognised as a
primarily as breakdown of such communication. In its
critical and powerful medium for reaching effective
ultimate analysis, social stigma does not as much
medicine to the patient.
represent want of knowledge as it connotes absence of
‘understanding’. Here ‘understanding’ presupposes re
A third lacuna in conventional thinking related to strategic
cognition
to ‘identity’ and an effort at satisfaction of the
appreciation of stigma. Unlike the common belief, social
‘identity’ needs. Identity helps one audit one’s worth in
27
terms of socially significant role which has a worth by and
large in the eyes of others. It remains a satisfying
experience when the cues one receives from others
remain congruent to one’s own estimation. This is exactly
what happened to Ramchand — one of the four cases
appended to this write-up. His close circle of friends
fondly called him ‘Thudda Ramchand” (a person devoid
of toes and fingers). But to himself he was complete man’.
We have also to realise the nature of the identity problem
which the patient in leprosy confronts; and its import to
patient care. Identity for a leprosy patient has a dual view
as viewed by the patient himself and as appreciated by the
social setting around. Significance of identity lies in the
mutuality of its appreciation.
More often than not, the patient himself remains a willing
party to destruction of his identity in the context of this
mutuality. Ignoble docility of the patient manifests this
phenomenon of self-destruction. How identity restoration
helps patient care is amply illustrated by the 4th case —
Mantora Bai.
The docility in this sense is wilful because of feelings of
guilt which overpower the patient. The guilt not so much
on account of notions of curse’ or sin’, but because of an
awareness of himself being a party to inflicting the curse
earlier on other patients when he was not a patient. The
hangover of old beliefs and such belief ridden behaviours
persist even after a change to patient status.
The patient—non-patient hand-in-hand Solidarity Run of
4th April in Bhilai, was a landmark development It
formed part of a long chain of measures aimed at
solidarity—solidarity through understanding of mutua
lity of strengths. Once again understanding’ presupposes
restoration of vital communication. These measures were
earlier initiated at Dongargarh in March, 1987. I was
actively associated with these initiations then.
28
The identity awareness’ which is considered critical to
promotion of intergroup communications between the
patient’ and the value-infuser’ in the society, should not
be mistaken with commonly present reluctance amongst
patients to reveal their disease status of leprosy, which we
call patient identity’. These are diametrically opposite
psychological states. Whereas the former connotes innate
priding on socially meaningful role-based strengths, the
latter speaks for shying’ about a state, which is considered
demeaning or undesirable.
The phenomenon of innate priding’ on strengths which I
am talking about need not be considered as relevant only
to individuals. It can be equally or even more relevant to
groups. We have always wondered if there is anything like
group priding involved or possible for a leprosy patient.
We should realise that suppressed or oppressed priding
often gives rise to sharpening of needs of group identities.
Similarly, one Ramchand giving fight worthy of humans,
justifying human existence, provides enough sustenance
to group priding if only it remains on communication line.
One of the four cases appended to this write-up, viz. Sabdi
Bai’ forcefully underlines group centred identity aware
ness.
I am told that in the village where Sabdi Bai incident took
place is not a solitary place. Thenon-patient community’s
gestures of solidarity in the villages around have gone far
beyond the bucket’ and the laddie’, extailed in Sabdi
Bai’s. In recent months on pulse dates the villagers have
been treating the patients with tea and some light snacks.
In my view the Marathon Run in Bhilai created heavy
demands on both individual’ as well as group-centred’
identities. One young man (a M B. case) drew considerable
attention from the Field Workers. He was a seasoned
athlete—a fast-runner’. He was confident of winning the
Fast-Runner Prize announced by the Marathon Organi-
i
sers. But he was in the midst of an acute identity crisis. He
made his participation in the Marathon conditional.
“None of my close acquaintances should be on the scene
of the Track; and I will not wear patient identification (Red
Ribboned) Badge”, he insisted. He.was, however, prepared
to run in a Race, in front of a stranger’ group even with the
“Patient Badge’. It is worth noting that this young man had
no physical marks on his body which revealed his patient
identity. And yet he was conscious of the need to hide it.
So overpowering was the impact on his mind of the
devastating character of his own imagery of the disease.
He was not aware of the fact that the wide acclaim from his
“fast runner’ prize could, have overshadowed his patient
identity. He had also not stretched his imagination to
understand that the din of applause and the glory of the
prize’, would have dazzled even the critical or punitive
eye of his own close social groups whom he was hell bent
on avoiding.
No wonder on the Marathon day young man chose to keep
away from the Race Track.
The only flicker of hope that we could see in this case was
his preparedness to run the race in front of a stranger’
group. This response constitutes significant data. Why
underestimate the impact of acclaim even if it flows from a
stranger group? Who knows, even the stranger-groupacclaim’ might have opened vital communications with
the 'known-social-group ?
What critical roles, the Treatment Providers — the Field
workers-can play in reviving and restoring the vital
channels of inter-group-communications between the
'patient’ and the value-infuser’ was quite convincingly
demonstrated in Dongargarh, more particularly in
Puraina. Equally convincing has been the quality of
Patient Care that the communication restoration
processes have unshered in. Besides bringing forth the
highest ever rates of fresh-case-reportings, the proportion
of 'patient' and value-infuser-influenced’ reportings has
reahced as high as 97 per cent. Shri Nehru Sharma and
Jitendra Kalchuri have extensively reported elsewhere
(pp) the quality of patient care that has made this a ruling
reality.
The Aarohan (Step-up) programme in Bhilai provided a
new edge to the communication restoration function.
Here the conventional Treatment Providers’ played
secondary roles, leaving the major task of restoration of
inter-group-communication to the 'value infusers’ almost
unilaterally, rather un-aided by conventionally practiced
'programmed medicare’.
This is a development of great significance to assessing
scope of revival and restoration of inter-group-communication on a far wider scale. It indicates possibilities of
linking de-stigmatisation processes and also concerns for
Patient Care with spheres where medicare’ is not called
for. The Forces which will eradicate Social stigma in this
sense, point towards a new possibility — a broad based
social movement, responsibilities of which would be
shouldered mainly by the value-infusers’.
Ramchand confronts his identity crisis in a forthright
manner. In the process he derives considerable strength
to stretch’ and rise high. By any chance if his father had
not thrown Ramchand out in the wilderness what course
Ramchand’s career would have taken is a hazardous
guess.
Similarly in the second case, but for the stubborn fight that
Janak Ram had put up against his neighbours and near
relations, the teeth that Badi Maa’s Care’ acquired during
the process, might not have been as biting; and the results
as enduring.
Even the thunderous hit’ of Sabdi Bai (in the third Case) at
29
one of the patients, has provided as noble a setting to
Seth’s heart-warming gesture as one could have ever
imagined. The gesture meant reassuring character of the
desirable two-way help processes in leprosy. These
provide the basis for intergroup communication.
The fourth case The Community Tank’ unravels group
dynamics in an overt form. It is centred around the issue
of non-discriminatoiy use of a common tank for bathing
tty leprosy patients. To me it gives a clear message: scratch
30
the surface of any problem in leprosy, you will find
somewhere underneath group identities’ engaged in
action and reaction: whether overt or covert. Dig into them
a bit deeper, release of communication becomes a reality.
Our experience of personal life tells us: priding identities
break barriers to communication, so long as they do not
tum malicious but remain authentic. Authentic messages
are always received! Barricaded social communication
causes hinderance to Patient Care.
I
9.1. Thudda Ramchand
I
(
(
Amita Prasher
'Did you mark the difference in height?... Itfe not just tall...
it s one and half times taller? ... Twenty years back my
father literally threw me out from that house!... My fault?...
I had contacted leprosy." Ramchand’s voice was
surcharged with emotion. He was standing in the
doorway with hands stretched across the door-frame. His
brother who was not on talking terms either with him or
his family, was standing in the other doorway barely ten
feet away and was watching us with intense curiousity...
i
i
i
"I constructed my house bit by bit with my own hands ...”
raising both his hands and pinpointing his two digitsabsorbed fingers of both his hands Ramchand took me
towards the main entrance of his house. "You see this big
door-frame?... This was made with these hands!... Fingers
or no fingers! He started at me pouring out pride from his
looks. I saw a sparkle in his eyes which sent across stirring
messages of accomplishments.
(
o
Soon I went inside. Sat on a bench. Ramchand called his
wife. As she came forward beaming he remarked: "She has
been my contant companion through thick and thin...
even in my carpentaiy work. I’ve never been left alone. Her
father was a great help too. Like a solid rock he stood
steadfast by my side. You know, this house stands on a
piece of land earmarked for a garbage dump in my father’s
large courtyard? Thank heavens! I was thrown out within
the court-yard. My mother who, too suffered from this
disease was thrown out God knows where. The family
does not know when and where she died.”
(
i
<
i
<
< >
Audio Visual
Specialist
DANLEP
New Delhi
None else in the family, either his three brothers, or their
families who stayed just across this wall, ever contacted
the disease. He stayed on in the father’s family for over 5
years after initial doubts raised their head... Once it was
confirmed as Leprosy he was mercilessly thrown out by
his father in league with other brothers. He was married
then.
It was Ramchand’s father-in-law who took him to different
Hospitals. Those were the days of unsure treatment.
Ramchand wandered for years tossing between hospitals.
Even Mission Hospitals were not spared. He wandered
here, there, everywhere. Never giving up hope of recovery.
His unflinching faith in himself, his acute sense of self
respect and strong determination were his constant
companions. Undaunted by loss of two digits ofall lingers
from both hands, almost total loss of toes and wet ulcers
on feet, he set out to build a new life for his wife and the
three daughters. His inner strength and a robust sense of
self awareness were the sustaining forces in his life.
His daughters were married happily, thanks to his fatherin-law’s undaunted support. No one ever condemned
them as diseased father’s children. His grand-children
preferred to stay with him, even though the daughters
were married in distant villages. His social acceptability,
according to him, was a product of his strong sense of
determination to lead a respectable life. There never was
any occasion when his close circle of friends felt awkward
because of his presence. They would rather canvass for his
carpentary skills and get him work Fondly they called
him: Thudda Ramchand.
His workplace always resounded with laughter and gossip
of daily visitors. His friends coming and eating with his
family was almost a regular feature. His grand-children
moved about in the family unawares of anything amiss.
They' were fond of playing with him. Despite his other
preoccupations, he would fondle them with utmost
warmth, leaving his work aside.
31
<
3
(
3
O
Rickshaw with Badi Maa by his side. Janak Ram’s wife
nursed her religiously. Through careful nursing they
prevented her anaesthetic hands and feet from
developing ulcers. No wet wounds ever developed. For
want of effective medicine, they could not effectively arrest
the process of absorption of her fingers. With daily
massage and bath they managed to keep her skin smooth
like that of a child.
Children played and grew in her lap. Younger ones always
preferred to sleep with Badi Maa in her bed. Such a large
family of about 25-30 persons staying with a leprosy case
and none contacting the disease was a strange
phenomenon. Janak Ram always highlighted this fact
whenever he talked to others about Badi Maa. He made
everyone wonder and question the general belief about
the spread of this disease.
But while trying to disprove the general belief, he never
made any secret of early Leprosy history in Badi Maa’s
father's family. Her uncle, her sister and her nephew had
leprosy.
Janak Ram, an ardent believer in regular treatment always
contrasted total absence of transmission in his own
family, with the spread histoiy in Badi Maa’s father’s
family. With great pride he would underline the
scrupulous patient care which he and his wife
unsparingly provided in his family right from the word
'go'. He thought he got deeply involved in Badi Maa’s care’
largely because of the challenge his. relations and
neighbours threw at him.
"Whenever I moved with Badi Maa tp Dongargarh enroute
to Baitalpur, people stared at us with sniding looks. But
what they received in return were contemptious looks
from me”, concluded Janak Ram.
We sat together alongwith Badi Maa and sipped our tea.
While listening to Janak Ram I felt as though it was not a
history of Badi M^a’s care but that of the travails of Leprosy
patients over past few decades. What I was not sure about
was the motive force behind this 25 years long
uninterrupted service. Was it his love for his Badi Maa, or
his ebullient, unbending personality which was out to
scoff at the humiliating social boycott clamped on the
family by his relations and neighbours?
‘)
o
o
O
O
o
o
o
o
o
o
o
o
o
o
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Q
34
o
o
o
9.3 Sabdi Bai
Ram Lakhan Sahu
We are now reminded of a similar incident at village Musra
DDP subsequently, on a Pulse date—24th of April, wherein
identity concerns of the patients came to the surface. At
Musra usually we distributed drugs at the PHC Sub-Centre
located in that village. The woman Health Worker at the
Sub-Centre was on leave that day. Her house was under
lock and key. The house was our usual source of drinking
water supply for the patients who swallowed drugs with a
glass of water.
I asked a local woman patient why alternate arrangements
were not made — if not from anywhere else, at least from
her own house? Of course her house was a little far away.
Each one started gazing at other’s face. 28 MB and 12 PB
patients were present on the spot. None moved into
action.
Sabdi Bai, the 52 year old MB patient who had reached
there from her village about 3 km away, took initiative and
asked Sukhi Ram—a male patient—to go and get water
from the nearby Seth’s house. Sabdi Bai was the selfappointed leader of Leprosy Patients from the villages
covered by Musra DDP. She was herself a footdrop case.
The fingers of her right hand had developed contractures.
At the command of Sabdi Bai, Sukhi Ram got up alright.
But did not move. He was not sure if the Seth would oblige
him with a bucket full of water; and also hand over a "lota”
to drink the same.
Perturbed by Sukhi Ram’s hesitations, Sabdi Bai
thundered: "Persons like you have run down a leprosy
patient’s image. You are a disgrace on us. Let the Seth say
Para-Medical Worker
why do you anticipate that?... You could’ve at least
Dongargarh Town
gone
there and made a request?” She swung back and
Rajnandgaon LEU.
leaned against the trunk of the huge peepal tree in utter
dejection. Her face was emitting fire.
Sukhi Ram was shaken by this outburst. He moved
forward and approached the S^th. To his utter surprise
the Seth brought forth not only a bucket full of water but
also a lota and a stainless steel tumbler.
All took their medicine.
It was not for Sukhi Ram now to return the bucket. The
Seth himself came forward to take it back. The Seth in this
case was none other than Ganesh Agarwal who was on the
forefront of a combined procession taken out in the village
during the first-phase I.T. camp days in February. Perhaps
the patients’ memory had failed. But to Seth it was as
unfading and green as ever.
Seeing Seth’s gesture Sabdi Bai moved forward with a glint
in her eyes. She felt doubly proud today. Her anticipation
of community’s response had come true. Her dejection at
the unjustified lowly self-image, which was generally held
close to their hearts by patients like Sukhi Ram, was well
vindicated.
Vindication of her stand, apart, today she was proud and
behaved like a leader, because she had brought with her a
new MB case—a woman of 35—for treatment.
Whatever happened today caused no surprise to those
who had known Sabdi Bai at the Camp. While at Cheepa
Camp during the I.T. first phase, she had similarly
thundered at Preet Ram who used to come to camp in the
morning, take medicine and skip away till next morning.
Preet Ram avoided staying with rest of the patients. While
at Purena, she noticed Preet Ram at the drug distribution
time. She called him and pronounced her punishment:
35
"No inedicine, no food till you apologise for the tricks you
played with the group at Cheepa; and agree to stay on at
this Camp”.
No need to say that Preet Ram stayed at the Camp. He
remained on the forefront of the ‘cleanliness’ committee
in his subsequent unreserved participation in the Camp
life.
36
9.4 Mantora Bai
Udai Lal
. ' -' s
I 11
J <
F
Indeed a marked change has come about in the quality of
the people’s response to leprosy in the wake of the mixedgroup-residential camps. Even in Khalari, a village which
we generally consider as highly responsive, things were
different before the camp. Khalari is about 2 kms.away
from the nearest DDP.
Last year one Senior Officer visited this place in August.
Because of rains, the village was not approachable by Jeep.
As we walked, on the way we came across two small
children — one boy and the other a girl. Both had patches
on their body. These were fresh cases, not reported to LEU
before. The girl’s father was standing close by. We asked
him whether he was aware of those patches on her body.
He just laughed, indicating how did it matter! The visitor
did not like the couldn't-care-less-atutude of the father. He
even didn’t know if the girl was going to school. The officer
looked at me in utter surprise and asked: "Now tell me
what will bring this girl under regular treatment? Your
workers frequent this village. You say this is a good
responsive village; and yet your system is not aware of the
presence of these two cases.”
I didn’t have a straight answer.
Social
Communicator
Khalari Village
Dhundhera Sector
Rajnandgaon—LCU.
Then I took the visitor to meet an old woman patient —
Mandora Bai—who.was in her fifties. She was a M.B. case
and had discontinued her treatment in utter dejection
much against the advice of Workers and village elders.
From whatever reactions the Visitor had gathered so far
from the villagers and myself it did not take him long to
realise that Mantora Bai was a difficult person—not easy
to handle. Her two sons had almost given her up as a gone
case. They, too, had failed in their persuasive effort.
Similarly her neighbours were quite unhappy about her
non-cooperative and, at times, offending behaviour.
She was not clean either.
Here too, the visitor raised a pertinent question: "Do you
really expect her to walk two kilometres to the DDP and
collect her medicine when you start the MDT?”
It was a question to which there was no clear cut answer.
Mantora Bai is a changed person today. At first she joined
the five day, first phase BIT Camp organised in her own
village — Khalari in Februaiy. She developed an intense
liking for the Camp life. She moved to Purena on her own
steam, primarily because she liked the company of other
patients; and also the cordial atmosphere that prevailed in
the Camp.
She returned to Khalari after spending 8 days at Purena.
She was a totally changed person after Purena. She
remained clean and moved closer to her two sons. They
too liked her new responsive behaviour. No more irritating
responses towards neighbours either. She moves out,
visits neighbours’ houses, spends time gossiping and has
made herself socially acceptable. Her sons who had
almost deserted her earlier, now take turns to take her to
DDP on their bicycle.
On the 3rd 'pulse day’ in April, both her sons were away.
But then Mantora Bai didn't miss her 'pulse day’ visit. Oneyoung boy of 17 from the neighbourhood took her on his
bicycle to DDP; and she had her drugs.
Judging from the change that has taken over Mantora Bai,
one starts wondering if 'Patient Care’ in leprosy was at all
an individual centred ‘clinical’ phenomenon — an affair
between a doctor and a patient alone? The treatment and
the response that came patient’s way from the social
environment around mattered most in materialising the
‘Care’.
37
9.5 Return of the prodigal son
Runu Chatterjee
Ramkisan who is in his late twenties contracted leprosy
about 10 years back. Then he was part of village Kathua in
Bilaspur district. For about 2-3 years he took the medicine
on the sly. But clawing of his fingers subsequently made it
difficult for him to hide his disease anymore. He found
staying on in the same village difficult. One day he decided
to move out. He knew another patient Baisakhi from a
close-by village. Baisakhi had moved out; and was staying
at Shardapara in Bhilai.
Shardapara, a newly settled area, renamed by towns
people as slum area, was known for one of it self-settled
leprosy colony. Baisakhi stayed in this colony, he gave
Ramkisan much needed shelter in the ramshackle
verandah of his equally ramshackle hut.
During his stay at Shardapara, Ramkisan took his
medicine regularly. Further clawing of fingers stopped
and he was earning his bread respectably. He was a cured
person. He stayed on with Baisakhi happily for about six
years working as contract labourer.
One day, God alone knows how and why he decided to
return to Kathua; and start life anew. For sometime his
parents also were insisting on his return home.
For about a year and a half, he stayed at his home in
Kathua and managed his farm. But his heart was not there.
His thoughts kept straying to Shardapara and to his
friends in the colony. What he liked about his stay at
Shardapara he was not sure. But he couldn’t resist
compulsive pull of whatever he liked about his stay there.
House Surgeon
Bhilai Hospital
Bhilai
38
One fine morning Ramkisan got up pushing aside all his
hesitations. Approached his mother and said: "Mother, I
don't like being here!” Mother looked up; but not with big
surprise. Perhaps she already had sensed her son's mood.
Nonetheless she asked: "Hope we have not caused you
any agony?”
"No not at all... But I don’t like being in Kathua”, replied
Ramkisan with tearful eyes.
On his return to Baisakhi’s place whosoever asked him
^bout why he returned, he had only one standard reply: ‘‘I
didn’t like it in Kathua!” To avoid misunderstandings
about the treatment he received fforp his parents,
occasionally he used to add: “I didn’t like it... inspite of
the love and affection, my parents showered on me... But
now I’ll stay on here...I’ve even got back my old job.”
I asked him: Since he was a cured’ person now; and has a
job too, why didn’t he stay out of the leprosy colony?
Ramkisan smiled at me, shrugged his shoulders and left
me alone, wondering all along why?
9.6 The common village tank*
Ishwari Soni
Village Khairbana was known for its high concentration of
leprosy patients. With its 2000 population, the village had
about 60 cases. Not all were regular in taking medicine
from the official Control Agency. A few of them even
refused to accept their patient status. Such high
prevalence of leprosy cases in the village, has remained an
enigma and simultaneously a cause of unnerving anxiety
for the villagers.
In early days, say about 15-20 years back, this village was
extremely harsh with leprosy cases. People in the village
were threatened with social boycott if they maintained
any kind of relationship with a leprosy patient or his
family. A patient could, not participate in any social
function. He could not move freely everywhere even in a
weekly market. A place was fixed for him. He could not
bathe in the common village tank.
Over the years the ECU workers tried to soften the
villagers' attitude to a certain extent. Now the patient does
not face social boycott. His movements too are not
restricted. But the problem of bathing in the tank still has
not been resolved.
Between 18th and 26th May 1988, ECU workers planned a
combined community and patient education camp while
launching Intensive Therapy under MDT. The camp was
fully residential. Local Gram Panchayat leaders had
offered to make arrangements free of cost for food and stay
for about 50 leprosy patients and another 30 Social
Communicators and ECU workers. While agreeing to give
suport for the camp, the villagers had taken an assurance
from the Gram Panchayat leaders that the patients in the
camp will not be allowed to bathe in the common village
tank. Water required for bathing of the patients will be
provided by the Gram Panchayat through hiring a tanker.
Physio-therapy
Technician
Rajnandgaon LEU The ECU workers attending the camp obviously did not
relish this particular condition which was earlier
acceeded to by the Gram Panchayat leaders.
They decided to tackle on priority this issue of patient
bathing in the common Tank. Frenzied activity followed.
For the first two days meetings after meetings were held
with prominent villagers and Gram Panchayat leaders, to
reconsider the earlier decisions.
The ordinaiy village people did not take lying down the
vacillations of the Gram Panchayat leaders. They insisted
that the camp should be moved out to some other village
in that case. Everybody in the village was asked by the
villagers to boycott the camp activities.
The situation was getting out of hand. The village
sarpanch who was one of the organising committee
members of the camp, also panicked, sensing the mood of
the village people. All got worried.
Surprisingly the third day dawned with a glimmer of hope.
There was yet another round of talks between the ECU
workers and the prominent villagers. Amongst the
numerous alternative propositions, one appeared to find
favour with all.
It was decided that prominent villagers from localities
around the tank and all the ECU workers in person would
join the patients in their bath. The bath was nicknamed
Ganga Snan (holy bath). Like a bath in the holy river
Ganges, this bath was anticipated to wash away all sins.
The workers hoped that though not sins it would at least
wash away the fear of leprosy from the villagers’ minds.
Three prominent persons from the village, all the patients,
and the entire ECU staff (which included even the DEO)
joined the bath.
As they bathed, they heaved a sigh of relief. Thought the
nightmare was over once for all. The problem was solved.
----------------------39
* Adapted from the Report on Khairbana Mixed-Group-Residential (MGR) Camp.
•
40
But surprises were still in the waiting. As the bathers were
on the return trail from the bath, they were scolded by the
village women using choicest unprintable abuses.
Menfolk threatened to stone them if they dared to take
bath in- the tank again. Even a few stones came hurling as a
test of things to come if the ECU workers persisted in their
designs.
Tempers once again rose high. At this stage even the
patients lost their cool. They started answering back.
Situation was slipping out of control.
localities. Even understanding between the patients and
the villagers developed positive overtones. The hardliners
from localities adjacent to the tank preferred to go into
shells when they realised the campers included people
from the Revenue Department.
The workers held yet another round of meetings. But no
movement from the earlier held positions resulted.
It’s more than three months now since this incident
occurred. The ban on patient bathing on the tank has not
reappeared. Those who remained on the forefront during
this episode have been championing at village forums in
other villages, the cause of unrestricted bathing in
common tanks.
The workers thought it was high time they moved a step
beyond discussions. Alongwith patients they started
taking out morning processions (Prabhat Pheris). This
activity led the group closer to the villagers in the far flung
Finally it was decided in a large meeting of the villagers
that everybody would be allowed to take bath in the tank.
On the last day all including patients, prominent villagers
and workers jointly took their bath in the tank. Some
villagers from the adjoining localities also joined.
10. Developing Communication
in Leprosy Work
Bhagwan Lal Sharma
Even after granting the obvious limitations of the word of
mouth’ based communcation, we decided to harness it as
a prime tool in Bhilai. Whether it was a sensible decision to
adopt this medium in a City of over half a million
population was a debateable point. Indeed, the medium
we preferred was not based so much on word of mouth’
as on action’. Action was used as a prime tool because no
other medium could have effectively transmitted the two
key messages which formed the basis of the Bhilai
programme. As one would see, both messages had strong
action orientations.
Message 1
for these messages were the patient as well as the non
patient communities. “Speak through action became the
organisational culture during the month-long progra
mme. It automatically carved out an insider role to all
those who formed part of the action’ programme. One
was reminded of the programmes given to people during
the early phases of our independence movement. For
example the bonfire of foreign-made clothes in those days
was a simple action-programme. It provided opportuni
ties for those peopel who had a desire to act. Yheir action
in turn carved out for them an insider’ role; and the
bolstering that followed shaped their ideology. Ranks of
freedom fighters swelled through such simple progra
mmes during those days.
Person with Leprosy History is no more an infectivity-risk'
Thanks to the action orientation’ of the Bhilai
to society if he is undergoing Multi-Drug Therapy.
programme, we soon saw numerous persons from
Overcome the scare of infectivity in Leprosy by accepting
different walks of civic life playing insider roles’. Generally
the person’ in your social
and work life as a coa person who acquires an
partner.
insider’ role, and feels
...a person who acquires on insider’ role, and
proud about it, becomes
Message 2
critically important in deve
feels proud about it, becomes critically
loping
communication.
A large majority of persons
important in developing communication.
The person could be relied
with Leprosy History are as
upon for providing con
“strong’’ and “sturdy’’, as
tents to the communica
hale and hearty as any of
tion which, with passing of
4116 normal healthy persons in the Society. Their capacity
time, become more meaningful to the people. This way he
to serve the Society and to enrich the community life is in
helps in widening the effective range of the communica
no way inferior. Discard the age old weakling’ image of
tion
thereby enlarging the target group. In a way the
this person by giving him opportunities to demonstrate
person
who acquires an insider role’ in a communication
DANLEP
his capabilities and strengths.
process helps not only in ensuring its spread but also in its
Health
Not only the medium for the message but even the
Education Advisor
growth on sound lines.
Durg & Rajnandgaon anticipated outcome was action’. That way the marathon
Districts (MP)
?put together both the messages into one. Even the targets
41
We could see such a process materialising in Bhilai during
the Aarohan Samaroh month. My friend Nand Kumar
Soni’s involvement with the programme could be cited as
an example. We saw in him a detractor in our first meeting.
But soon he acquired the insider’ role; and got engrossed
in developing with the help of his wife, a network of
communication which soon acquired the pattern of
oceanic circles. A pattern which makes it difficult to find
out where one circle ends and the other begins. We could
see how a living communication not only grows in its
content and in its range but also in its design by forming
numerous intermixed circles with independent epicen
tres.
Leprosy work needs communication to be developed in
such networks, partly because one Health Educator seeks
to develop communication in about 500 villages, which is
a next to impossible task, unless viewed as a function of
developing network, based on circles with independent
epicentres’. Each epicentre representing one insider’'
role. Facilitating multiplication of insider’ roles therefore,
becomes the prime task of Health Education. In Bhilai we
could see how action’ helps in accomplishing this task of
facilitation.
The futility of a Health Educator’s conventionally assigned
task also arises because he never plays the facilitator role
of a mid-wife’ who nurses situations that are pregnant of
insider roles’. Situations which have rich action
propensities do not attract his attention. Instead he is
made to feel comfortable with a parrotry for messages
which do not solicit action’.
A communication which originates from a role carries
with it a potential of spread. Whether the role is that of a
supporter or of a detractor, hardly makes any difference so
long as it emerges out of an action-based role. A role-based
42
communication has the propensity to spread so long as
the role-taking process is marked by volition or an element
of free-will. The degree of freedom enjoyed by a person
while taking a role, indeed makes all the difference to the
diffusion potential of the emergent communication. Whe
we facilitate role taking by a potential comunicator at his
free will we are ensuring simultaneous growth of the
communication. One could safely define the potential
communicator in leprosy work as a person who has a
desire and capability to act on his free will. The real issue
before communication development therefore boils down
to whether or not the communication facilitator has the
capacity to promote role-taking.
I had learnt about this distinct character of a
communication facilitator role at a personal cost in
Dongargarh last November. It was the first day of the
'Mixed-Group-Residential" (MGR) Camp. About 92 M.B.
Cases had reported for the 14-day event. A problem
cropped up in the evening when shifting of the Campers
from one Dormitory to another was undertaken to
facilitate Bed-Rest to ulcerated cases under one roof.
There were 4 Dormitories and the patient had occupied
these earlier on considerations of social proximity. The
women patients' group was comfortably settled in the
process. The male members however felt slighted.
Once the Physio-Therapy Technician (P.T.) announced the
need for shifting all the ulcer cases under one roof, the
Male Group snatched the opportunity by rushing to
occupy vantage positions, leaving the women no
alternative but to adjust with the open Varandah. Both the
groups became adamant and took a rigid stance of
wanting to occupy the beds inside the dormitories. The
issue resulted in a big row. The problem acquired serious
proportions. It soon crossed the management capability
limits of the P.T. The P.T. called in the Seniors.
The Seniors thought of converting the developing
situation into a learning experience for all. They declined
to intervene and expected the patients to evolve a criteria’
to allot the beds. “It’s a problem created by your
behaviour. You have to solve it. We shall not intervene.’’
They said and left the Campus.
I had been away from the scene of the incident, unaware
of what had happened. When 1 came back and knew about
the impasse, I worked out a solution. Presented the same
before the patients. Earlier they had put their heads
together for devising a criteria’; and had spent over an
hour without evolving one. They were tired. They
welcomed my plan and complied with it promptly.
When my colleagues returned to the Campus, I informed
them that the problem was solved. One of my colleagues
snapped back cryptically, “But what was the problem?”
After a brief discussion with my colleagues, I realised that
in my anxiety to overcome the impasse, I had deprived the
potential leadership talent amongst the patients, a role. I
had curtailed their freedom to deal with the problem.
The processes involved in facilitation of role taking appear
to be slow to start with. But once matured they become
highly productive. These create demands on patience
from both sides, on the part of the facilitator as well as the
potential role-taker.
We saw how all those who had a desire and capability to
act developed into perpetual communicators in our circle
of volunteers in Bhilai. How we could easily draw in more
and nrare hands and minds with a wide variety of roles.
The entire range of activity, developed through dialogues
with different groups from the civic lifeofBhilai, showed
how roles emerged. The statement titled “What can we
do?” underlined the potential in the society to take up a
wide variety of roles in leprosy related work. The
“Acharan” list presented elsew here on page — indicates
the scope for further enlargement of the list. The three
items listed under column 5 of the list’ highlight the
possibilites of removing misconceptions about leprosy
through promoting participatory process. Something like
community surveys. Such surveys would present
unlimited scope for enlarging action orientalions of
community education activities.
A small group worked in the patient Wards in the Bhilai
Hospital. They remained absorbed in developing Patient
Profiles. This activity kept them busy all along. “Babuji aap
ayen. Hamare saath baithe. Hamari sooni. Lagata hai,
hum beemari se pare ho gaye!” (“You came, you remained
with us. The awareness that someone had time for us ...
itself has given us a great relief. Perhaps far greater than
what the actual cure’ would bring ’), one patient said. The
activity created insider’ roles for two volunteeers and
exemplary mannger.
This activity exposed us to one more dimension ofthe pro
cess of communication development. This can be stated
as ‘interactional’ communication. In leprosy work, inter
actional communication is critical because interaction
alone can develop understanding. And understanding
presupposes mutuality of concern. Promoting mutuality
of concern and facilitating transaction of such concerns
43
remains the prime function of communication in leprosy
work. Presence of the two entities required for this
transaction, need not be that of individual alone. These
could be group or even communities. Involvemennt of
groups and communities in this process of communic
ation by itself would mean initiation of one of the noblest
forms of community action
Interaction communication does not preclude Agent or
Agency Roles. These roles, too, are basic for promoting
such communication. They are distinguished by their
44
function. Agent identifies the focal point’ for action’.
Then promotes and facilitates interaction; and helps in
improving the quality of concern’ in the ongoing
transaction in understanding. While initiating the action’
he gets in. Plays an indsider’ role. But then to ensure
uninfluenced transaction of understanding between the
patient and the empathiser he gets out. He therefore
plays both, an insider as well as an outsider role. This
character of a communication facilitator role is distinct
from that of an activist'. The latter tends to have a
perpetual insider' character.
11. Corrective surgeiy in leprosy at general
hospitals: missing linkages
Dr. RJ. Choubey
Why launch one more Corrective Surgeiy Service when
those that are already on the Map, remain grossly under
utilised? What is it that leaves the existing services
underutilised when, as Dr. Antia puts it, a staggering
750,000 surgical corrections would be required and not
even a fraction of this requirement is met by the existing
facilities? What is the guarantee that a pay-for’ service
would score over the cost-free’ ones available elsewhere?
Would leprosy patients show preference for services at
General Hospitals over the ones offered at the specialised
Leprosy Centres? These were some of the issues the
Hospital Management had to steer clear before launching
the Service at the Bhilai Hospital.
Chief Surgeon <&
Director
Medical & Health
Services
Bhilai Steel Plant
Bhilai
diagnostic channels for the stigma-shy leprosy cases.
In January 1987 while still continuing the MDT Services in
our Dermatology Unit, a special Leprosy Eradication Unit
of NLEP pattern, was launched in the SADA area to
effectively serve the slum dwelling patient population
located at the outer fringe of the township.
Our decision to launch a Corrective Surgeiy Service only
underlined our deep-seated concern to provide image
lift’ for the disease and the patiertt. It was also indicative of
the management’s keen desire to bring the hospital
services within the reach of leprosy patients in the villages
of at least the two neighbouring districts of Durg and
Indeed, the decision to launch the Service was a logical
Rajnandgaon. We have reasons to believe that the leprosy
and conscious extension of the management’s manifest
patient who generally remains conscious of the deep
concern for meeting the service needs of the leprosy
erosion in his image
~ in
" i the society, holds strong
afflicted
persons.
We
__________
preferences for a treatment
always considered leprosy
centre which provides the
an unjustifiably stigmati
much
needed
'image
The line of distinction between leprosy services
sed and isolated disease;
boost
’
.
Bhilai
Hospital
met
at the general hospitals and the ones at the
which required image-lift’.
this need with its 'pay-for'
specialised leprosy centres is likely to blur with
Installation of facilities for
services
for
non-BSP
slight weavering.
treating the disease within
patients. Its 700 Bed facility;
the galaxy of general medi
8 fully equipped modem
cal services, we considered
Operation Theatres; 2000
one of the critical devices for counteracting the stigma.
daily average OPD attendance; and over 1900 Staff
manning the Services which catered to 75 specialities, all
In 1982, the Dermatology Unit of our hospital started Multi
these factors did boost the Hospital's image in the eyes of
Drug Therapy. We were, perhaps, the first to replace
the leprosy patient.
monotherapy in this part of the State. Since 1986 our
Dermatologists started providing diagnostic help to Skin
The need for initiating a well integrated corrective surgeiy
Disease Diagnosis & Treatment Camps, in the country
service at this Hospital was being experienced and
side of the two neighbouring Districts. The Camps were
articulated by both the governmental as well as non
organised by the governmental leprosy doi^trol agency.
governmental agencies over past few years. Its location at
Eventually these camps turned out to be respectable
a General Hospital like Bhilai was viewed with great
45
expectation. A proposal was jointly sponsored by the two
District Leprosy Eradication Societies of which the
respective District Collectors were the Chairmen, and the
Hospital Management, to operate the Service for one
month and to assess the organisational implications for its
effective operation in the interest of patients coming from
the countiy-side.
Even though the Hospital had well reputed Orthopaedic
and Plastic surgery units, we invited known Surgeons in
the field of leprosy from far off places like Agra, Bombay
and Kumbhakonam in the South. We even arranged for
services of a Physio-Therapy Technician from a Mission
Hospital who had experience in pre and post operative
Physio-Therapy. The sponsoring Societies intended to
mobilise properly selected 100 patients for operations
during the month.
We could, however, operate only 44 patients; 31 for Claw
hands; 6 for Footdrops; 4 for Lagophthalmos and 3 for
face lifts. How do we account for this low performance
especially when our Surgeons worked on their free days?
The patients flow remained erratic.
The shortfall has brought to surface certain organisational
weaknesses of the programme. The purpose underlying
our pay-for’ services (Rs. 500/- per operation) was two fold.
The service should reach those who feel handicapped for
want of an ‘image-boost’. Obviously, those who were
swearing to continue with their practices of 'begging', did
not require image boost and as such were thoughtfully
kept out of the purview of this service. One third of the
initially selected patient list comprised professional
beggars. A large majority of them were habitual beggars for
whom woridife’ with improved functionality was an
anathema. Here the issue of their incapacity to pay for the
Operation was not at stake. The community did come
46
forward to support the deserving. Only 6 operated
patients paid the fees in full out of their own pockets. The
rest paid only partially which subsequently was made
good by donations. There were 14 patients in this list who
were entitled to have cost-free services because of their
lineage with Bhilai Steel Plant—the parent organisation
provided the Hospital facilities free of cost to its
employees and their dependents. 'Pay-for’ services,
therefore, did not create any hindrance for the needy.
The other purpose behind 'pay-for’ services related to
testing the depth of intensity of need for the 'Correction’ in
the context of experienced occupational handicaps.
Intensity of the 'felt-need’ was imperative for post
operative responsive patient behaviour, to ensure
consolidation of the gains from the Operation.
We were found wanting in providing adequate educa
tional support to orient the patient community, the
community of well-wishers of the patient; and also the
staff of the Leprosy System, both in the interior as well as
in the Bhilai Township areas. In no other way could we
explain what happened in an area like Dongargarh. Out of
11 Cases who were willing to avail of the facilities, only 4
reported at the Hospital. I hear that all the 4 Cases do not
speak now, of their happy experience. Only one out of
these 11, was handicapped in making the stipulated
payments, In this case too, local community came forward
to support the cases financially. I am speaking of
Dongargarh, because by far we consider it fairly advanced
in matters pertaining to patient education and commu
nity orientation.
This was a glaring flaw. The NLEP pattern does not fight
shy to admit low priorities in its programme operation, to
deformity prevention. No wonder, at the stage of proper
selection of Cases for corrective surgery, or subsequently
during the post operative phase, the LEU staff could do
precious little in meeting the physio-therapy require
ments of the operated patients. To keep them as indoor
patient for lengthy periods was cost prohibitive.
I am of the view that in future the patient selection for
corrective surgery should be confined to only those areas
where physio-therapy based patient care has made
adequate headway, and where the field staffis well trained
for rendering desired pre and post operative care to the
patients. Our planning for the next corrective Surgery
Camp would have to provide for such training well in
advance. May be as we did for skin diagnosis camps, we
may have to take the first step. Neither the hospital nor the
patients dwelling in rural areas, would be in a position to
avail of the much desired education within the closed
shell of indoor' facilities. It will be cost prohibitive.
Similarly succumbing to temptations of making improvi
sations through creating low-cost, post-operative care
facilities else where. It would mean segragation through
back-door. It would be self-defeating. The line of
distinction between leprosy services at the General
Hospitals and the ones at the specialised leprosy centres
is likely to blur with slight weavering. It is imperative to
guard against subtle pressures to adopt lines of least
resistance.
All said and done the ‘in-group’ — out-group’ sociology
remains operative not only amongst the rural or urban
communities. It is likely to operate surreptitiously even in
a liberal and outgoing hospital system like Bhilai. Eternal
vigilence is all that can be provided for.
47
12. Management of corrective
surgery delivery
Dn P.L. Chandrakar
It was not all smooth sailing. In a way it was a new
experience for us. We were, however, fortunate in having
with us the country’s eminent surgeons during the
month-long Camp of corrective surgery for Leprosy
Patients. Organisation of the Camp at the General Hospital
like Bhilai was a major step towards integration ofleprosy
treatment with general health care. In our hospital the
patients admitted for operation were not isolated or
segregated in separate Wards. They were mixed with
other indoor patients during the pre as well as post
operative phases. If all the major hospitals and surgical
departments in the country take over this task of surgical
rehabilitation of leprosy patients as a part of general
health care, then social intricasies of this problem will be
on its way of assured resolution.
Senior Orthopaedic
Surgeon
Bhilai Hospital
Bhilai
48
We were operative on a third Front as well. We wepe
anxious to reach our services to the poor patient but with
a difierence. Our interest in corrective surgeiy was not
restricted to mere restoration of function to disabled
limbs. We looked upon the functionality restoration as a
means to respectable living. The corrective services were,
therefore, restricted to sponsored patients. Efforts were
made to locate a sponsor wherever a deserving poor was
in need of it.
Retrospectively speaking, our ‘pay-for’ services stand
indicated. It promoted almost obligatory search for
sponsors which in turn put the patient in a supportive
•social circle. Indeed, this approach should form a major
plank for organisational effort in future. Based on hind
sight, I consider advance planning for subsequent camps
may have to initiate simultaneous action on all the three
Besides removing all the barriers between leprosy and the
fronts — (i) Advance selec
general health care pa
tion of Cases with identi
tients, we were making
fied sponsors or with orga
special efforts to reach our
We were anxious to reach our services to the
nised social supports; (ii)
services to the countryside,
poor patient but with a difference.We looked
Field worker training in
at least,' in the two neigh
upon the functionality restoration as a means
appropriate skills so as to
bouring districts of Rajto respectable living.
enable him to effectively
nandgaon and Durgfunction as a referral inter
The National Leprosy Con
nee; and (iii) developing
trol Programme so far has
planned seTvice schedules directed toward corrective
not given adequate priority to disability/deformity
surgery at the Hospital level.
prevention aspects or to corrective surgery. As a result no
A few common tips to field staff which will help initiate
specific programmes in this sphere were operative at the
action in the direction of proper selection are given below:
field level. In its absence we faced a wide variety of
Most important consideration while selecting a case for
problems. The end-product — patient satisfaction — did
surgical operation was cleanliness. The person to be
not mature in a manner rewarding to the Surgeon. The
selected must be physically clean.
field staff needed special orientations about selection of
proper cases for surgery, the character of patient
There should be no source of infection such as a trophic
motivation that needed to be developed; and in-depth
ulcer or a septic finger which will contaminate a surgical
understanding about pre and post operative care.
wound.
Since leprosy is a Microbial/Bacterial disease, whenever
Bacterial Index is high, it is likely that a surgical procedure
may cause complications. It may either precipitate "Lepra
Reaction” or lead the surgical reconstruction to a failure. It
.may also cause dissolution or absortion of bone grafts.
Bacillaiy presence in small bones ofhands may also cause
failure of bone and joint corrections. So it would be better
to wait till Bacterial Index is brought down from high (3+
— 6+) to low (1+ or less). If a person is prone to Lepra
Reactions then it would be safer to stabilize him under
good medical and anti-leprosy treatment.
Similarly bacillaiy presence in skin can cause failure of
skin grafts, such as Eye Brow grafts or Face Lift and Ear
Lobes correction. It is better to have a Zero Index or
Negative Skin Smear before setting on such fine surgical
procedures.
Certain important considerations about physical condi
tion of the patient also need careful attention:
Healthy with good Blood Count (Haemoglobin 10 to 12
Gms.);
The paralytic deformities should be well established
and not partially affected or of recent origin, as such
deformities can be recovered spontaneously or with
Medical treatment and physiotherapy. So it would be
good for persons affected to be under observation of the
Surgical and Physio-Therapy teams for at least six months
before surgery. This also gives the teams opportunity to
undertake Pre-Operative Physio-Therapy.
Fixed Deformities of bones and joints will need
complex Orthopaedic Procedures and can be undertaken
at the convenience of the surgeon.
As a special consideration, young, hopeful and needy
persons should be generally selected on priority for an
operation.
Main problem area relates to patient motivation. Both
while selecting a case and while educating him about his
role in making the alterations to be introduced through
surgical interventions, a functionally satisfying expe
rience. The quality and character of his relationship with
the Physio-Therapist, remains critically important in this
entire chain of operations beginning with initial patient
motivation for corrective surgery, then the understanding
of his role during the pre-operative stage; and then his
responses to 'reeducation' involved during the post
operative stage.
The relationship between the Physio-Therapist and thepatient remained splintered during our Camp. The
communication process encountered three stage bar
riers. The Physio Therapy at the field level in the LCU
remained to be organised. The ad hoc lines of
communication with patients, therefore, reached the
right quarter only through a lay person who was not a
physio therapy trained person.
The second stage break in communication occurred at the
Bhilai LCU level. The Unit located in SADA area did not
have a Physio-Therapy technician yet appointed. In his
absence a make-shift arrangement was made by bringing
in a temporary deputationist. He was supposed to
function as a liaison between cases coming from the
districts and the Physio-Therapy Unit at the Hospital.
The third stage break occurred at the Hospital level. A
Physio-Therapist who had considerable experience in
handling reconstructive surgery cases, did function at this
end. But then he was not regular Hospital Staff. No wonder
this level could not effectively play the co-ordinating role
expected of it.
49
Things shaped reasonably well, notwithstanding these
staggered communication processes, largely because of
overall motivational climate prevalent in Bhilai during the
Aarohan Samaroh month. We surgeons worked on our
Free’ days. Not only did we work on days marked free for
Operations, we received focussed attention from the total
50
system. We were at the Centre Stage during those days.
With more streamlined communication well installed up
to the patient level in the field and little brushing of the
skills through training at all the three levels, Bhilai would
keep on to its forward march in promoting leprosy patient
care at General Health Care Hospitals.
13. Flow of corrective surgery cases
and the fieldwork
Shyamrao Meshram
I was in frequent contact with the patients during the
1 entire course of the Corrective Surgery Camp in Bhilai. I
B 1 would visit patients’ homes; explain to them about the
II B scope of rectifying deformities; and encourage them to
i undergo the operation. I would also help them in getting
admission in the hospital and attend to odd outside
problems faced by them after admission. During my visit
to these patients, I realised that some of the patients were
unable to pay the fees of Rs. 500/- although they
considered the surgery essential. To forego the operation
for want of money would have been most unfortunate for
them.
i
One incident involving Nabibeg comes to my mind afresh.
He was a poor vendor who earned his living by selling
bangles. Both his eyes were affected by Lagophthalmos.
He was incapable of paying the prescribed Hospital Fees.
Any delay in surgical operation would have resulted in
total loss of his eye-sight.
I was in a dilemma. On one hand* humanitarian
considerations were pushing me into questioning .the
pay-for’ service introduced by us. On the other, since I
was myself a party to the decision; and had insisted on
introducing a pay-for’ service mainly to usher in an
element of seriousness about post-operative care. I could
not ignore the compelling logic lying behind the decision.
Free of cost services would have left no links between the
patient and the hospital in post-operative phase ifwe had
not mobilised adequate social support for facilitating the
operation.
Other ways open to reduce the burden of operation costs
on the patients was the hospitals recovering in full or jn
part the costs through reimbursements from some other
Para-Medical Worker philanthropic Trust or the Government, on the basis of
SADA Bhilai LEU
operations performed. This also appeared to be the usual
Bhilai
practice. But then such practices pushed patient local
social group interactions to the background. This path led
the leprosy patients to increased isolation. When their
absorption in the social mainstream was more desirable.
We therefore considered more appropriate to develop
patient’s linkages with Hospital Services through the
medium of local community supports.
I discussed these various issues arising out of Nabibeg’s
case with my colleagues and others who were busy
making preparations for the Camp. Soon we could
mobilise support from some social organisations. Some
small donations also came our way. As a result he was
operated upon. The settings thus provided by the social
support might prove a great help in his post-operative life
if properly harnessed. Didn’t such social mobilisation of
support mean humiliation for the patient: some people
argue. We were aware of such pitfalls in our approach.
Indeed, there was no occasion during the camp when the
patient had to approach any donor. The well-motivated
camp organisers remained active on mobilising financial
support. It is true approaching a donor does become
embarassing for persons who do not have any record of
seif-less service or transperancy of purpose. On occasions
it even becomes humiliating. It is also true that
approaching a donor is not just the same as approaching a
patient with Application Forms for securing him
reimbursement grants on his operation costs. It is also not
the same as sitting across the Admission Desk for
screening applications for cost-free surgery and passing
on ‘admission slips’. The latter functions cany with them
a benefactor aura.
The benefactor role certainly differed from the one of a
‘seeker’ (Yaachak) which we had carved out for us. In
Dongargarh we did expose ourselves to Yaachak' roles.
0/4^ r
COMMUNITY HEALTH CELL
47/1,(First FloorjSt. Marks Road
BANGALORE-560 0U1
51
We had seen with our own eyes how the collections of one
and two kgs. of rice boosted our confidence and
augmented our strength vis-a-vis the patient. How we
succeeded in raising the credibility of our work to new
heights. For us mobilising social support had become a
charter of faith. Even for providing a MCR chappal for Rs.
50/- we insisted that 50 per cent cost should come from
local people and not from governmental subsidies. We
were aware: leprosy work basically involves mending of
fences with local communities around the patients.
Approaching the society with problems of patients like the
ones of Nabibeg, brought the patients closer to the Society.
Otherwise the society behaved with utter indifference to
patient’s problem.
The patients not having adequate cash to pay for the
Hospital fees was just one of the hurdles. It was overcome
with tenacity and effective liaison with society. Their real
problems, however, were different. To put these patients
in a setting which ensured perpetual attention from the
social groups required greater attention. Attending to
their needs of work opportunities after the Operation,
required priority consideration.
While moving amongst the patient for selection and then
for motivating cases so selected for undergoing
operations, I quite often encountered several misgivings
about the pay-for’ character of the services provided by
us. Patients were made to understand that all services
anyway required to be paid for. Who pays for it is the
aspect that concerned the patients. Normally in a free-ofcost’ services, the costs were either borne by the
Government or a non-govemmental Philanthropic Trust.
A third alternative was all that costs remained available
without making any payments.The patients could easily
understand these implications of cost-free services. Their
concern was not so much about pay-for’ or ‘free’ service.
They were anxious to minimise their own contribution to
the total costs of Rs. 500/-.
It was explained to the patients as well as to the donors’
that Bhilai Steel Plant had generously subsidised the cost
of these operations. There subsidies ranged between 150
to 300 per cent per operation. Whereas actual cost of an
operation was in the range of Rs. 1,250/- to Rs. 1,500/-, a fee
of Rs. 500/- only'was actually recovered at the pay’
counter.
It would be of further interest to note that the actual
burden of financial costs was minimally passed on to the
patient. In our scheme, the real poor patient remained at
advantage.
4
52
Incidence of Sharing pf Operation Fees with the Community
Extent of
payment
by Patient
Fully Paid
(Rs. 500/-)
Less than
Rs. 500/But above
Rs. 250/-
Less than
Rs. 250/But above
Rs. 250/-
Rs. 100/or Less
Fully paid by
the Community
Number of x
Patient
6
2
8
12
2
% of total
patients operated
20%
6.7%
26.6%
40%
6.7%
The Table above makes it amply clear how the ‘pay for’
services in actual practice worked because of the social
supports mobilised by the organisers. With all this
organisational work how could we explain the large
numbers who did not avail of the services?
Our patient cards showed 189 cases with deformities of
fingers. Out of these, 93 were found technically fit for
operations. Only 53 were willing for operations. But
actually 27 reached the operation table.
There were 25 Foot-drop cases according to data on
Patient Cards. 12 were found fit for operation. Only 7
reached the operation theatre.^
Out of 11 Lagophthalmos cases on Patient Register, 9 were
fit for operation. Only 4 reached the Operation Theatre.
One important factor accountable for low reportings, was
the bar put on persons actively engaged in begging and
unwillling to shift to non-begging pursuits. Such cases
were not considered for operations during the Camp.
It may not be therefore correct to understand the gap
between cases fit for Operations and those actually
reached the Operation Theatre as resulting from
incapacity to pay the Operation Fees.
For want of scope for sharing of experiences of successful
operations, a large number developed second thoughts.
The case of 'free-service entitled’ BSP cases is quite an
eloquent example in this respect. According to our initial
surveys, based on patient cards, we had 56 BSP cases fit for
corrective surgeiy. Out ofwhich 33 consented. But only 14
came to operation theatre.
53
Exhibit
Patients operated during corrective
surgery camp at Bhilai hospital
S.No.Name of Patients
Site of Operation
Left hand
Left Hand
Left Hand
1-eft Foot Drop
8.
Ramesh Kumar
35 Camp-l Bhilai
30 Jat Kanhar D. Garb
19 Berala Kumhi Durg
55 Karam tala Singhola
Sirsa
23 Moharam Kala
Rajnandgaon
45 Budhwari Mohalla
Ward-14 D. Garh
15 Basant Para
Ward-18 D. Garh
14 Hatkho; Bhilai
9.
Navi Beg
55 Sharda Para Bhilai
10.
Khorbahara
11.
12.
13.
Ku. Sakhi
Devendra Kumar
Dukhu Ram
14.
15.
Prem Lal
Gandhi
1.
2.
3.
4.
Sudershan Sharma
Pyare Lal
Deva Prasad
Darivao
5.
Dilip Kumar
6.
Bideshi
Surendra Kumar
54
Age AddressDate of
16.
Tej Nath Parganiha
46 Pitora Nandi ni
Mines
25 C/o Dr. Gude
20 Bhilai-3
50 Bhandarpur
D. Garh
55 D. Garh
35 Semariya Nandani
Mines
57 Durg
17.
18.
19.
20.
21.
Gorakh Nath
P: Chiranjivlu
V.N. Takey
Lobeddin
Ramlu
51 Sector-I Bhilai
42 Bhilai
46 Sector-6 Bhilai
40 Sector-6 Bhilai
44 Sector-2 Bhilai
('law hand
I-eft Hand
Claw hand
Face Lift &.
t-agophthalmos
Both
Lagophthalmos
Both
lagophthalmos
Face & eve brow
Left foot drop
I-eft hand
Claw hand
Right hand
Left foot drop
('law hand
Left food
Left hand
Right hand
Left hand
Right foot drop
S.No.Name of Patients
22.
23.
24.
25.
26.
27.
28.
29.
30.
31.
Khuman l-al
Abdul Haque
Awadhu
Jagat Ram Khare
Kundan Singh
Kedar Kumar
Mohammad Rafi
Rajesh Kumar
Nar Singh
Bideshi
32.
33.
34.
B.L. Gupta
Ku. Jarina Khatoon
Vinod Kumar
35.
36.
Smt. Parwati
Kum. Tileshwari
37.
Prabhat Kumar
38.
Net Ram
39.
Kum. (isha
40.
41.
42.
43.
44.
Suresh Kumar .
Nivaz Ahematl
Shiva; i Sharma
Munna Lal ('.opal
Ghanashvam Singh
Age AddressDate of
41 Ruanbandha Bhilai
35 Bhilai
15 Camp-II Bhilai
28 Sector-6 Bhilai
46 Sector-4 Bhilai
25 Kosa Nala Bhilai
60 Sharda Para Bhilai
21 KP Bhilai
24. Sector-6 Bhilai
50 Pushpa Hospital
Rajhara
38 KP Bhilai
14 Baba Colony Bhilai
20 Housing Board
Bhilai
26 Supela Bhilai
10 Arasnara Patan
Duig
18 Vaishaii Nagar
Bhilai
24 Vaisliali Nagar
Bhilai
12 Ravidas Nagar
Bhilai
25 Bhilai-3
42 Bhilai
40 Bhilai
40 Bhilai
42 Bhilai
Site of Operation
Left hand
Left hand
Claw hand
Ulnar hand
Right claw hand
Left hand
Face lift
Claw hand
Right hand
Both Lagoph
Claw hand
Foot drop
Claw hand
Ulnar hand
Claw hand
Claw hand
Claw hand
Claw hand
Foot drop
Ulnar hand
Ulnar hand
Claw hand
Claw hand
1
Corrective Surgery
Firm steps towards 'In-Group-Absorption!'
Leprosy Patients admitted for Corrective
Surgery in common. General Ward Beds!!
Corrective Service at the Bhilai Hospital
simultaneously stimulated a robust awareness
of 'oneness'... of "overcoming"; and cultivated
a spirit of "combat", while restoring
functionality to damaged limbs!
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14.Role of corrective surgery in
leprosy rehabilitation
Dr. N.H. Antia
WHO estimates that about 25% of the 12 million persons
suffering from leprosy in the world suffer from
deformities; and (at a veiy modest estimate) about 10% of
these could benefit from reconstructive suigeiy. This
would still present a staggering figure of about 300,000
patients requiring about 750,000 operations at the rate of
alxjut 21/z operations per patient. There is no way of
fulfilling even a fraction of this need with the surgical
facilities at our disposal. Even if we should want to invest
our meagre resources in creating special centres for this
expensive aspect of leprosy treatment, experience reveals
that it will be difficult to find surgeons who will attend
these centres on a regular basis because most of such
special centres that have been built and equipped at
considerable expense are underutilized. Moreover such
specialized centres while helping individual patients tend
to perpetuate the stigma of this disease, which in turn is
the main reason for corrective surgery.
One of the major causes of stigma of leprosy is the
unscientific fear of the medical profession and no amount
of persuasion will help overcome the stigma in the public
mind so long as the medical profession does not accept
leprosy on par with all other diseases.
Director
Foundation for
Research in
Community Health
Bombay.
Surgery and research have to a considerable extent helped
in overcoming the fear of leprosy among the medical
profession. Once interested and involved in these, what
are inherently very interesting problems, the fear and
stigma, which are very superficial, quickly disappear. The
Tata Department of Plastic Surgery (TOPS) was the first
non-missionary general hospital to accept leprosy
patients in its general wards in 1958. Thirty years later it is
no novelty to see such patients being treated in general
hospitals throughout the country. Given encouragement
and modest support I believe many more hospitals would
follow suit. The integration of leprosy into the medical
colleges and general hospitals and overcoming the stigma
among the doctors is by far the greatest contribution of
TDPS to this disease, not the devising of new operations or
the number of operations that have been performed.
Even though the chance of deformity is very low if the
disease is diagnosed early and the patient is regular in
taking treatment. Percentages mean little, for if he is the
unfortunate person to get a deformity, to him his
deformity is 100% and a branding for life. Today he knows
that it is possible to correct it. Surgery has therefore not
only helped those who have been deformed but has given
new hope and encouragement to all patients to come
forward for treatment.
The surgical techniques for the correction of deformities
of the face, hands and feet have been much simplified of
late by surgeons > like Dr. Arolkar and can even be
prevented by nerve release. They can hence be
undertaken by any general surgeon with the facilities of
any general hospital. These new simple techniques need
better dissemination.
The most dehabilitating condition in leprosy is the
ulceration of anaesthetic feet. While the microcellular
rubber car tyre chappal may be worn in a leprasorium it is
seldom used outside due to the stigma which it carries. An
acceptable footwear which can prevent damage to such
feet would be a boon to treatment.
In conclusion I would repeat that leprosy medicine and
leprosy surgery must be integrated into general medicine
55
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16. Deformity & leprosy today
Dr. Dinker D. Palande
Today Leprosy is curable at any stage. With modem Multi
Drug Treatment (MDT), the duration of therapy is reduced
to lesser periods of six months to 2 years. With early
detection and treatment of the disease, as well as with
early and prompt detection of nerve involvement,
defprmities'need not occur at all. Even if they occur, these
can' be corrected by surgery. Nerve paralysis caused by
Leprosy is recoverable in the beginning and becomes
permanent if untreated at early stages. Nerve destruction
leads to muscle paralysis which in turn causes
deformities and disabilities. This can be corrected by
surgery.
There is also loss of sensation in the area supplied by the
affected nerve. This cannot be recovered. Loss of sensation
leads to injuries. Untreated injuries cause infections since
these tend to get neglected because of absence of pain.
The result is several types of mutilations.
Education in the “care” of those parts of body with loss of
sensation, can prevent
injuries,
infections and
mutilations. All this is in the realm of "possible” thanks to
the fund of knowledge available today. However, what is
possible can be transformed into an observable reality,
only through patients cooperation and effort.
Chief Surgeon
Sacred Heart
Leprosy Centre
Sakkottai
Kumbakonam
Tamil Nadu
58
The fund of knowledge as well as its application has
remained operative on a much restricted scale. It is not
reaching major segments of the society. The result is fear,
fear of onslaught of deformities. One must realise that here
fear is bom out of ignorance, out of misinformation
regarding the disease, regarding its complications and its
treatment. All these are underlying reasons of social
stigma and the aversion that we see around. It signifies the
distrust of the unknown.
Surgeiy of paralytic deformities is a specialised and
delicate skill. It can be successfully performed by a team of
well trained, skilled persons—surgeons, physiotherapists,
nursing staff and most importantly a motivated patient. In
excisional surgery—like removal of appendix—only
passive cooperation of the patient is required. But in case
of reconstructive surgery, since patient’s learning is
critically important, active cooperation of the patient is
essential. The surgeon only performs a technical job. The
actual teaching and training of the patient is done by the
physiotherapist and the occupation therapist who teach
care and safe use of insensitive hands and feet. Wherever
all these facilities are not available, the result of the surgery
is unlikely to be promising. Moreover there are financial
constraints.
Today such facilities are available only at a few centres.
Railway travel concessions are available to the patients.
Financial help from trusts and the Government is also
available. For various reasons knowledge about these
facilities is not reaching the needy families : the patients,
the doctors and the public.
All this indicates the direction in which work needs to be
done. The month long camp at Bhilai is one step forward
in that direction. But its success can be assessed only after
a few months, after observing how the patients have been
using the new capabilities.
Many such efforts are needed to minimise the difficulties
to overcome the constraints and to achieve the goal:
treating leprosy like any other disease, reaching the
various services to patients easily and effectively.
17. Role of physio-therapy in
corrective surgery
Kesar Das and M.L Khan
Physio-Therapy plays a crucial role in fecilitating
functionally satisfying results from Corrective
Surgery to Leprosy Patients. Skin tends to become
dry in anaesthetic palms and feet. It thickens/
toughens and eventually develops fissures and
cracks.
.
■■ ■
=
i
Similarly in Leprosy affected paralytic hands, feet,
fingers and toes, when the affected joints remain
unused and uncared for over long periods they
tend to become stiffer. The stifihess results from
joint-capsules and ligaments becoming thick,
consequently leading to shortening of tendons of
long muscles. Condition of shortened tendons,
because of constancy of position of flexion,
progressively worsens. It eventually leads the
bones to get fixed in flexed positions.
It is necessary that patient is made to understand
how he could care for his anaesthetic skin and
paralytic spillover affecting joints. PhysioTherapy
helps the patient to prevent or overcome drying,
thickening and cracking of skin and stiffening or
contracture of joints, tendons and skin.
To undo the damage done by early neglect which
has necessitated corrective surgeiy, some routine
procedures are practiced to alter the fixed
position of flexion before corrective surgeiy is
undertaken.
Pre-operative Physio-Therapy
Sr. PhysioTechnician
Bethesda Leprosy
Hospital
Champa
Water, Oil, Wax are the materials that are used to
facilitate the procedures. Plain water can help
soak and soften diy skin. Oil can be rubbed to
further smoothen the water soaked skin. Warm
wax can provide moist heat which can act on
tissues deeper than skin, such as joints,
ligaments, tendons, etc. Warmth thus provided
increases blood circulation as well. This proce
dure is called Wax Bath.
Soon after wax bath the warmed hand with
increased blood circulation and softened liga
ments is massaged with warm oil. This treatment
helps in further softening the skin and in
stretching of ligaments and joint capsules.
Tenderness and care are of utmost importance
while dealing with anaesthetic limbs.
Pre-operation Exercises
Specially designed series of exercises help the
joints, ligaments, tendons and the contracted
skin to stretch, extend and move in a better range
and in improved positions. These exercises are
mostly active when done by the patient himself.
Therapist can also assist by passively moving and
stretching skin or joints if found neceSsaiy.
Patient himself can learn to perform the passive
exercises under the supervision of a therapist.
Improved positions gained by Wax therapy,
Massage and Exercises can now be held in
maximum extension angles by using Plaster of
Paris (Gypsona) .circular bandages applied to
individual fingers making cylindrical splints or
tuck-in splints for thumbs, or slab splints made by
the therapist. These can be removed everyday and
fresh ones applied. This gives progressive
opening to stiff joints and facilitates stretching of Physio- Technician
skin to positions of full mobility. It also provides The™py
opening of contracted thumb webs or joint skin
^prosy
flexures.
^ontro1 Unit
Rajnandgaon
59
Towards Plan of Operation
Records kept on range of movements through
angle measurements can show progress; and if
after adequate time and therapy there is full gain
of mobility then attention of surgeon is drawn to
consider suitable operative procedures. If the
progress stops at some lower than desired level,
then the surgeon can consider modified qr
different procedure to suit the patient’s need
while preparing the plan of operation.
With the Plan of Operation prescribed by the
surgeon the Physio-Therapist further helps the
patient to learn and identify the muscle that will
be used as a transfer to move the paralysed joints,
fingers or toes, and to do the job of paralysed
muscles. These substitute muscles are then
trained to work as patient's voluntary movements,
so as to turn them into a habit for using them
independently. This phase is very important for
reactivating these muscles under voluntary
action after muscle transfer operations; and to
make new joints, tendon, fingers and toes and
hand or foot functional. This is followed by
electrical stimulations. Such stimulations may be
needed to make individual muscles contract and
stretch as demonstration of their actions for
patient’s education.
Post-operative Physio-Therapy
Immediately after surgery the hands and feet are
immobilized by the surgeon in chosen positions,
using Plaster of Paris (Gypsona) bandage Casts or
Splints, for periods ranging from 3,4 to 6 weeks, in
cases of hand, foot and bone surgery'respectively.
60
This period of forced rest heals wounds, helps set
firmly the junctions and unions made by the
sur’geon; and secures unions of muscles and
tendons attachments to bones, joints, tendons
and grafts or bones and joints reconstructed.
After removal of the plaster, dressings and
stitches, the hands and feet are inspected by the
surgeon.
The patients are then turned over to the physio
therapist once again for his care. The patient once
again undergoes Wax bath; Oil massage; protec
tive splinting; Graded, selected exercises; and
Gradual education. He learns the use of
transferred muscles to ensure desired actions.
Utmost care and soft handling is necessary while
doing anaesthetic limb massage and exercises,
primarily to avoid over-stretching detachment or
rupture of new junctions so meticulously
constructed by surgeons. Care is also necessary to
gain good response to transferred muscle
functions.
The early education during pre-operative phase
helps the patient now to regain the use of his
paralysed limbs.
The patient is delighted to see the recovery,
strength and utility of his limbs. The therapist is
happy over results of his personal efforts. The
surgeon derives satisfaction.at the outcome of his
performance. After all Reconstructive Surgery is a
team-work of the Patient, the Therapist and the
Surgeon.
18. Corrective surgery:
need for pre- and post-operative patient care
Dr. G.N. Malviya
Leprosy being a disease of skin and nerves, the outcome of
the disease in most of the untreated, mal-treated and
advanced cases is deformity and disfigurement. Long after
the disease is inactive; the loss of sensations and paralysis
caused by nerve lesions continue to affect the patient.
The deformities in a leprosy patient can be broadly
grouped into three Categories:
• Those resulted from paralysis ofmuscles subsequent to
nerve involvement—Paralytic deformities.
• Those resulted from the destruction of skin and its
appendages—Non-paralytic deformities.
paedics, plastic surgery and physical medicine have made
tailor-made” operations feasible to suit the needs of a
particular patient.
Timing the Surgery
The surgical skills for correction can be acquired with
some practice but what is needed is the awareness—the
awareness about the feasibility of sui^geiy, suitability of a
procedure and need of operation. A combined approach
is essential here and a team of surgeon and physiothera
pist alone can satisfy the need.
The course of disease normally influences the timing of
surgery. The surgery for leprosy being elective, care may
have to be taken to ensure good results. While selecting a
patient for surgery, certain checks are required to be
Paralytic deformities influence functional aspects of
limbs like hands, feet,
carried out to ensure: es
eyes, etc. These need correc
tablished paralysis (more
tion usually for occupational
than 1 year old); history of
rehabilitation.
In post-operative period, injuries are sustained
good response to the anti
by patients because of their attempt to look
leprosy drugs; absence of
Non-paralytic deformities
“reactions” at least for over
and work like normal persons... as they tend to
are mainly cosmetic in
six months; and whose skin
transgress their limit.
nature. They require cor
is free from leprosy germs
rection to help patient
(particularly for cosmetic
overcome his feelings of
surgery like connection of
social awkwardness.
nose, etc.).
Since anaesthetic deformities are caused due to loss of
sensation resulting from nerve idamage, they are rather
Assessment of Patients
difficult to correct. But thesei can be prevented by
Aim of reconstructive surgeon is to make a patient
adequate precaution and care.
occupationally functional and socially acceptable.
Surgical reconstruction of deformities in leprosy is a well
Patient’s motivation to accept surgery as a means of
established state of art involving established procedures.
rehabilitation is important for the ultimate success of the
The reconstructive sui'geiy is no more experimental.
surgical intervention. Reasons given by the patient for
Integrated approach covering disciplines like orthoseeking reconstruction, assessment of psychological and
• Those resulted from the effects ofloss ofsensations like
ulcers,etc.—Anaesthetic deformities.
Surgeon
I.C.M.R.
Jalma Institute of
Leprosy
Agra.
61
social needs, age, previous occupation, future needs—all
such data is important for planning and selecting
appropriate operative procedure.
After thoroughly evaluating pre-operative condition of the
hand, the state of non-paralysed muscle needs to be
ascertained to ensure its availability for transfer. The
condition of joints also needs to be examined against
contractures. All this is essential for the success of surgery.
Pre-Operative Physiotherapy
The pre-operative physiotherapy is essential not only to
bring the part to be operated to a more acceptable state,
but also to develop a crucial inter-personal relationship
between physiotherapist and the patient. This is the time
when the patient can discuss his problems more openly
with the person who is going to be his benefactor. Later
this information can be shared with the surgeon while he
plans for his surgery.
During this phase, which can last from a week to a month
or more, the patients are oriented to different exercises
which they are expected to perform after the operation.
During this period their coms, callosities, contractures
are attended to. The part to be operated is made soft and
supple with wax baths, soaking the part in water, giving oil
massage. The patient’s intelligence and his ability to
perform a set of exercises is also assessed. This helps in
opting for the appropriate operative procedure. Active
participation of the patient is crucial.
Although the surgeon aims and aspires for perfection, he
should take the patient into confidence and share with
him the prospects and limitations in his case. The basic
limitations in restoring his sensations needs to be
62
explained to the patient. It will help to prevent later
disappointments.
Post-operative care starts immediately after the operation
is over and lasts till the patient is restored its functionality.
The post-operative care is usually a time-bound
programme. After the operation, any swelling or infection
need to be carefully avoided.
When the stitches are removed a programme of exercises
begins, depending on the nature of operation performed.
This phase calls for close supervision from the
physiotherapist and active cooperation of patient. Utmost
care is needed because the patient is acquiring newer
skills. Since a muscle transferred to a new place has to
learn new jobs a conscious effort is needed at this stage.
Later on the newly trained muscles integrate with
subconscious and involuntary activity. This stage takes
between 3 to 6 months to attain perfection. During this
period patient needs re-examination at periodic intervals.
Since old habits are likely to persist, a conscious effort is
called for from the patient to practice new movements.
Surgeon and physiotherapist both have to interact with
the patient to achieve present goals.
After Surgery What?
The patients usually cany wrong impressions. They are
likely to think that surgical correction has Cured’ them of
the disease; and that they can stop anti-leprosy treatment.
This notion needs timely correction. Anti-leprosy
treatment needs to be continued till the desired state of
‘Inactivity’’ is reached. Deformity correction is different
from cure of the disease.
In post-operative period, injuries; are sustained by
to look and work like
patients because of their attempt U
normal persons. The patients generally tend to forget
about their handicap and tend to transgress their limit. In
the process they are likely to injure themselves. After the
surgical correction the patients are more prone to injuries
because their hands will be used much more than before.
The patients would have to realise the limitations
imposed by loss of sensation and take adequate care. This
will prevent mutilations and injuries. It will give them
lasting benefits.
63
19. Patient self-care and disability prevention in
leprosy control programme
Dr. H. Srinivasan
Disability prevention necessary in Leprosy Programmes:
The physicians role in chronic disorders, though
important, is rather limited. These conditions remain
chronic because the physician is powerless to remove the
cause or reverse the changes that have already occurred.
The major burden of managing under these circumstan
ces rests on the patients themselves who have to live with
their impairments, and the patient’s families and friends.
In order to bear this burden it is necessary that the
patients as well as their families and friends fully
understand the problems they face. This is true for leprosy
also. Leprosy patients face a life-long threat of deformity
and disability; but with an intelligent understanding of the
nature of this threat and with specific help from health
care personnel this threat can be met effectively.
Multi-Drug-Therapy (MDT) is the greatest advance in the
treatment of leprosy since the introduction of dapsone 40
years ago. However, MDT by itself will not solve all the
problems of leprosy patients. Even now large sections of
the public look upon leprosy as an affliction rather than an
illness. Since the leprosy patient develops impairments,
deformities and ulcers and becomes disabled on account
of them in public perception leprosy is associated with
such impairments. When the disease is diagnosed at an
early stage, i.e. before the bacilli have invaded nerve
trunks, MDT can prevent such invasion. Thereby
preventing damage to nerves and also the impairments
consequent to such nerve damage. But a large number of
The Problem
patients are diagnosed at a late stage and MDT cannot
guarantee that it will prevent damage to nerves and the
The medical aspect of the problem is that, as a result of
consequent impairments in
leprosy, the nerves serving
those patients. Further
the hand/foot are destroy
A large number of patients are diagnosed at a
more, there are a large
ed
and such damage is
late stage and MDT cannot guarantee that it
number of leprosy patients
permanent and irreversible,
will prevent damage to nerves and the
who have already suffered
except in the very early
consequent
impairment in those patients.
damage to nerves to varying
stages.
Therefore disability prevention has to be an
degree and they can deve
Because those nerves are
lop deformities and ulcers.
integral part of leprosy control activities.
damaged, the skin of the
So long as leprosy patients
hand/foot
becomes dry
develop and keep developing problems the public will not
and insensitive; and muscle of the hand/foot may also
be convinced that the patient has been “cured” by MDT.
become weak. The dry skin is apt to develop cracks. The
Therefore disability prevention has to be an integral part
insensitive skin is liable to develop wounds fium cuts and
of leprosy control activities. Only then can we expect
bums and also suffer internal injury from normal or
public co-operation and participation which alone can
excessive use. The cracks, wounds and injuries are not
make the programme successful in the frill sens t of the
painful as they are to a normal person. This is because of
word.
insensitivity. The patient does not bother about them
fcjURr
Patient participation necessary for disability
because they do not put the patient in pain. Since they are
not cared for, the cracks, wounds and injuries do not heal;
Jalma Leprosy Institute prevention
they worsen, become septic and lot of tissues get
64
destroyed. Chronic ulcers and contractures develop,
worsening the disabilities of the patient. Sometimes the
entire bone structure of the wrist or foot may be destroyed
and cripple the patient.
The problem for the patient, therefore, is how to escape
this dismal chain of consequences despite having
damaged nerves. The solution lies in his continues
participation in a Disability Prevention Programme; and in
the process develop "Disability Preventive Behaviour”.
3.
Skin care is self care. The skin will not crack if it is
cared for and kept soft and supple. A well preserved
skin preserves the hand and foot it covers.
4.
For avoiding injury whether at home, at work or by
accident, one should ask oneself before engaging
oneself in any activity :
•
How can I avoid it?
The goals of disability prevention
The goals of disability prevention are two: (i) to prevent
new deformities and disabilities; and (ii) to prevent
worsening of existing deformities and disabilities. These
goals are achieved by the patient through developing
"Disability Preventive Behaviour” (DPB). When the patient
realizes that DPB is a way of protecting and preserving
one’s own person, the goals become attainable and the
process of achieving them becomes meaningful and less
onerous.
Basics of Disability Prevention Behaviour
i.
2.
Only the patient can protect and save her/his limbs.
Others can help when they understand the patient's
need. Otherwise they may hinder patient's efforts.
"Injury consciousness’ is the psychological sub
stratum for the development of disability preventive,
i.e. self protective behaviour. It is the attitude based on
the belief that any activity is potentially injurious until
it is proven otherwise.
Is this activity likely to cause injury to my
hand/foot? If so:
One should also ask after having gone through an activity:
•
Has this activity injured my hand/foot? If so:
•
How can I avoid such injury in future?
Disability preventive behaviour gets established when
asking these questions and modifying ways of carrying out
injury causing activities becomes a habit with the patient.
5.
Allow the injury to heal. The patient has to learn to
recognize injuries by looking for them (inspection)
and feeling for heat over swollen parts. The patient
should also learn to manage minor wounds and cuts
and simple ulcers, how to clean them, keep them
covered and allow the injuries to heal.
Learning to live with insensitive hands and feet without
damaging them is not easy, but it can be done. In any case
it will be better than "living” as a cripple with mutilated,
deformed and useless hands and feet.
65
20. Touching moments with leprosy
patients in the hospital wards
Prem Pandit
After almost three long months, my husband had gone to
Bhilai on a brief visit. On his return home as I opened the
door the first person I enquired about was Nabi Beg. An
old man of 50, bangle vendor who had slowed down his
sales operations lately because of the problem with his
eyes. He was operated in April this year for Lagophthal
mos. A poor man, for whom it was difficult to pay even
Rs. 100/- which was the least we expected the patient to
pay. In a quick flashback I recollected how in a brisk move
we had collected some contributions from even the
patients, who were camping at the Shakti Peeth for the
Self-Care Camp. Out of these collections we gave him
MCR Sandals and Sun Glasses, besides cash towards his
Operation Fees. As I handed over the amount and the gifts
from the other patients, tears rolled down his cheeks. My
husband could understand my anxious enquiries.
Coolly he said: “Not veiy encouraging news!”
“What!”, I exclaimed utterly shocked.
Once again nonchalantly he explained: “Such things
happen. Afterall its a big hospital!”
But why?”, I insisted. “I could understand such things
happening when patients approach the Hospital
routinely on their own. For the Camp cases so many of us
were involved. At least twenty persons had made their
contributions to Nabi Beg’s Kitty, with high hopes and
feelings. I’m really upset”, I said in desperation.
“That only shows you’re new to hospitals. Such things
happen in big hospitals. After all even for the Hospital this
was a new experience”. Once again he was taking a casual
view of whatever had happend. I was utterly disappointed
with his responses.
Social Worker
New Delhi
66
“But it was not any hospital”, I persisted. “It was our
Hospital. It was a Hospital of all those hundred and odd
volunteers who laboured to collect funds, to nurse
patients. They have reasons to expect encouraging
outcomes.”
“Getting emotional doesn’t help!”, he remarked coolly and
went in, leaving me behind.
I was disturbed. As I satonthe sofa, I lost in recollections of
those eventful four weeks. A few striking incidents rushed
to my mind which reminded me of the depth of our
involvement in the outcomes.
Wherever one went, the Operation Theatre, the PhysioTherapy Unit, the Patient Wards, one came across an
atmosphere surcharged with emotions and feelings. I
remember how while responding to one female patient
one of our Workers had shouted loudly at her. She got so
upset. She cried and cried. “Doesn’t matter even if I die... I
shall never see his face again”..She declared to console
herself. The incident had pleased me so much. I liked the
uprightness of the patient. Later on when I met our
worker, I narrated to him the strong reactions the woman
patient had developed about his ways of handling things.
My mind soon jumped to a few other incidents. In Sector-I
Hospital on the first two days when the patients arrived for
their pre-operative physio-therapy, they were put up in a
separate Ward. The Ward did not have an attached Toilet.
They were served their meals not in their Ward, but in
front of the kitchen by asking them to sit in a row. Seeing
the treatment meted out to our' patients, gloom had
descended on my mind.
However silver lining soon appeared. The patients
themselves made noise about the discrimination. A Senior
Officer came and reprimanded the staff. He was stem. He
wanted these patients to be treated as any other patient.
“We shall not tolerate any discrimination”, he warned.
Immediately, the patients were shifted from the separate
ward and accomodated on unoccupied beds in the
General Ward. That evening they were served food in the
Ward along with other patients.
Next day things became normal as far as treatment on par
with other patients was concerned. We were happy.
As I sat on the sofa recollecting the events of the Camp, I
experienced within me a certain relaxation — an antidote
to the depression I underwent earlier.
My mind then rushed to patients in the Wards in Sector-IX
Hospital.
Umashankar
Umashankar must be in his early forties. A picture of
poverty, he was a hawker who sold Kerosene from door to
door. He was anxious to set right his clawing fingers and
eyes which had developed Lagophthalmos. But he had no
money to pay for the Operation Fees. His wife had brought
him to the Hospital with great hopes. When she came to
me she was in tears. Umashankar, with all his problems
still used to ride his bicycle with the Kerosene Drum on it
and earn a living for the family. His wife had brought
Rs.100/- with her, as her contribution towards the
OperationFees. I assured her that her husband’s operation
will be taken-up’.
Since I had to return to Delhi for some urgent work, I
introduced her to my husband. He too assured her saying:
'There won’t be any problem. I shall see you later”. Before
I left Bhilai I handed over a small note to my husband — as
a reminder.
Next week when I returned and enquired about
Umashankar, he was not there on the list of operated
patients. On enquiry I learnt that my husband could not
meet Umashankar’s wife that day as promised. Next day
when he reached the Hospital, neither Umashankar nor
his wife were there to be -seen. They had left the place the
previous evening itself. Maybe in utter despair. I was
displeased with my husbands slack handling of the case. I
didn’t have Umashankar’s address either.
Vinod Kumar
Another young man, who was recruited for Police
Training, came in for operation of his hand. While at
training he was participating in a parade when the
Instructor noticed his clawing fingers as he was saluting.
Immediately his case was reported to the higher-ups. The
Officer-in-Charge in turn referred the case to the Police
Hospital. But instead ofwaiting for the Medical Report, the
Officer discharged him from the training centre.
Later on the youngman fought his battle for over one year.
Ultimately he had to give-up even though the medical
reprot had shown him smear negative. Eventually the
young man joined BSP. Now he is happy with his work.
With great hopes he came in to get his clawing fingers
operated.
Laxmikant
Laxmikant was a picture of confidence. His father worked
as Civil Contractor. They had farm lands too. He had gone
to Dubai on a workshop job. There he earned enough
money. While in Dubai, he developed the disease. There
he was hospitalised. Could not get satisfactory treatment
though.
Tw'o years back he returned home. Worked on farm lands
of the family. He has plans of starting a Bakery. He has
applied for Bank loans. The young man was anxious to get
operated soon and then to launch his Bakery project at
the earliest.
n67
_
Sadly enough his medical examination revealed that he
had developed Lepra reaction. His Operation had to be
deferred. He lay down on hospital bed restless, always
giving a melancholy smile whenever I enquired about him.
Shivaji Sharma
Shivaji Sharma must be in his late twenties. He was
suffering from acute neuritis. The shooting pains which
he suffered had made the life difficult for him. Our
intervention with his employers helped him get admitted
to the Hospital. The Employers (B.E.C.) — an Engineering
Company — have been bearing the entire cost of his
hospitalisation. They have kept him on sick leave. He
needed blood transfusion. For want of the required group
of blood, the transfusion was getting delayed. One of our
Doctors donated his own blood. The case could be
expedited.
During the second half of my visit I could see marked
change in awareness amongst the patients. They had
acquired a group identity. A patient who was lying on bed
in the Orthopaedic Ward narrated how he managed to get
a bed for one of "our” operated patients, whose bed earlier
was spread on the Ward floor, for want of a vacant bed. He
had kept a close watch on patients getting discharged.
The moment he saw one getting discharged, he
immediately called the Ward Assistant and requested her
to accommodate on the bed “our” patient lying on the
floor. Ultimately he saw to it that the patient was shifted to
a cot. That patient s name was. Dariyao.
Dariyao
68
Dariyao was in his late forties. He come from Nawagaon.
He had one son. His one acre of dry agricultural land was
not sufficient for the family’s life support. He therefore
worked additionally as a casual labourer.
Six years back he had observed a patch on his right thigh.
He went to village elders who adxised him to ignore it. But
the patch started spreading. He also realised that while his
wholfe body sweated the area of the patch always
remained dry. He also experienced weakness in the leg.
Once again he went to the village elders. They advised him
to go to a local unregistered practitioner who diagnosed
him by reading his pulse. His diagnosis was paralysis of
the leg. The practitioner prescribed medicines (Syrup and
Tablets) which was costing Dariyao about Rs. 40/- per
month. He borrowed money and took the treatment for
nearly 3 months. Not experiencing any improvement,
once again Dariyao consulted another allopathy doctor—
a private practitioner of Nandgaon, who diagnosed his
condition as general weakness and asked him to reprot
every 3rd day for treatment. During the visits he was given
injections and some, tablets. This was costing him about
Rs.100/- per month. He never had any relief from this
treatment. The patch was increasing.
The Doctor on seeing no improvement, one day took him
on his motor-cycle to the Mission Hospital at Nandgaon,
and arranged for his skin smear. This confirmed leprosy.
He was depressed on hearing about the diagnosis. He
developed fever. Even in this Mission Hospital none
examined his nerves.
When he returned home he consulted the local PMW_
Goswami. The PMW took his skin smear again and
examined his nerves. He told him of the impending
reconstructive surgeiy camp at Bhilai Hospital; and
advised him to get his name registered for Footdrop
surgery. The PMW arranged for his admission to the
Surgery Camp.
On further questioning, Dariyao gave me some more
information about his case:
Dariyao's footdrop occurred 8 months back when he was
under treatment of the Private Practitioner, before he was
taken to Nandgaon Mission Hospital for Smear Examina
tion. For his admission to the Surgery Camp in Bhilai, he
paid Rs.250/- as his contribution towards Operation Fees.
For making this payment he borrowed Rs. 100/- from one
of his relations in the village. None from the community
had taken interest in his case, ever since they heard about
his being a leprosy case.
On return home, now, he proposed to resume his work as
soon as possible.
He had no plans to improve his income through acquiring
new skills. He considered himself too old to think of such
changes at this stage.
He also narrated how bad he felt while he was lying down
on the bed in the Ward. He saw four patients who came for
post-operative check-up all the way from Dongargarh,
were asked to come the next day because they reached
late, after the surgeon had finished his round.
Surendra Kumar
The young boy of 18, Surendra Kumar who was operated
for his clawing fingers, however, pepped up my spirits. He
greeted me with a broad smile: and narrated how happy
he was feeling. He had come to catch up with the Camp
programme by foregoing his annual examination of 10th
class. He said: Now once my hand gets alright, I can
pursue my studies with confidence and peace of mind. He
was not thinking of his earlier job of Basket Weaving. Now
he appeared eager to study further.
My mind which was disturbed on hearing Nabi Beg’s “not
so encouraging” report earlier from my husband, regained
some peace after Surendra Kumar’s case came to my
mind. His smiling face and his involvement with his future
plans really had cheered me up.
1 g°l UP from the sofa. Went inside. My husband was busy
with his paper work at his table, perfectly at peace with
himself, unperturbed by Nabi Beg’s fate.
69
21. A stitch in time saves nine
Dr. S.L. Gude
XT*
In the process of treatment, episodes of‘Reactions” and
“Neuritis” signalled by feelings of numbness or tingling
sensations in hands and feet, are a forewarning of
oncoming disabilities and deformities. Skilful manage
ment of these episodes through providing rest to affected
limbs, through splints; and through undergoing intense
treatment with Prednisone, provides urgently needed
succourtoprevent setting in of anaesthesia. Such early
prevention measures help control oncoming deformities
like claw-hand; foot-drop; and lagophthalmos.
The problem of deformity of a permanent nature which
stigmatizes the patient, crops up only when the
forewarnings get neglected and patient remains without
treatment for longer periods. The neglect results in loss of
Eye-brows, wrinkling of Skin or the Face, elongation of Ear
lobes and Depression of Nose.
It is said—‘A Stitch In Time Saves Nine.’ Even a single
‘surgical stitch’ can be avoided if ‘ care’ is taken to timely
treat the earfy symptoms of sensationless drying skin,
which when ignored generally leads to cracks, injuries
and ulcers in anaesthetic hands and feet.
Patients with Multi-Bacillary disease practice Nasal
Toilet with saline water. It is a simple but most effective
practice of keeping the nasal passages and para-nasal
sinuses free from crust-forming and mucoid discharge.
These are likely to get infected by pyogenic organisms.
Since the nasal septum and turbinates are thin bones and
cartilagenous tissues lined with thin mucous membranes,
possibility of infection from pyogenic organisms; and the
infection leading to perforation of nasal septum and
eventual collapse of nose is more common.
Danlep District
Co-ordinator
Durg & Rajnandgaon
■ Districts
70
The njucous membrane sheds innumerable leprosy bacilli
in normal course of untreated disease; and remains the
main source of infection to others. Keeping this part of the
body clean helps to prevent spread of infection. It also
protects the person from nasal deformity.
Nasal Toilet
Nasal Toilet consists of initiating free flow of Saline (0.9%
salt water solution) through one nostril of the Nose and its
outflow through the other. It can also be practiced by
sucking the Saline water through the nose and allowing its
outflow through the mouth. The Yoga exercise called Neti’
performs similar function. The 'Neti-Lota' can be procured
from any Yogashram.
Arresting Paralysis of Eye Lids
Eyes need to be protected with Dark Glasses or Goggles to
prevent irritation to cornea from light, wind and dust. This
is particularly necessary in cases with Multi-Bacillary
disease who have paralysis of Eye lids— Lagophthalmos
or Iritis and Iridocyclitis. Eyes affected by such anomalies
are generally red. Watch for a red eye and be prepared to
provide protection.
Protection of Hances & Feet
Hands and feet of Leprosy patients need special attention.
Leprosy affects nerves which provide sensations to palms
and soles; and motor power to muscles that move the
limbs, fingers and toes. Loss of sensation is likely to
surface in either of the five areas—Touch, Pressure, Pain,
Temperature sense (sensation of Hot and Cold) or loss of
Sweating which fine blood vessels control in palms and
soles. Each hair on the skin is supported by a very fine
muscle that moves the hair. One can notice this in
situations when one feels frightened or gets angiy or when
one is subjected to extreme cold. Similarly a small sac
which secretes the body-oil, is provided under the skin to
)
e
keep the hair healthy. With loss of sweating and loss ofthe
body-oil, skin becomes dry and tends to go dryer
progressively. The dry skin hardens and thickens and
eventually cracks. With loss of sensation and lack of pain, a
person does not realise that such cracks or fissures tend to
go deep and cause bleeding. The bleeding is the beginning
infection, which causes trophic ulcers. Cuts and pricks or
injuries to anaesthetic skin of palms and soles, ar*e not
experienced by the patient in the absence ofpain. Patients
walk with such wounded feet and keep on working with
such sensationless hands. If care is taken to keep the dry
skin moist and smooth with water and oil massage, the
chain reaction set in motion by drying of skin for want of
sweating and body-oil, can be arrested and also can be
reversed.
Microcellular Rubber (MCR) Sandals are specially made at
the Shoe Units in Bhilai and Rajnandgaon Leprosy Control
Units. This footwear protects the anaesthetic feet from
hazards of injuries. It also prevents the breakdown of
healed trophic ulcer scars and prevents recurrence of
ulcers once they are healed.
Hydro-Oleo Therapy
“Resting'—the Best Healer
This water and oil massage based treatment is called
Hydro-Oleo Therapy. Patient needs to soak his hands and
feet in a basin full of water for half an hour. The affected
person can rub and scrub the feet to soften the hardened
skin and remove the caftoused skin surface at the same
time. Immediately after soaking in water, some Vegetable
Oil, Cream orVaseline/Pomade should be rubbed into the
skin of palms and soles to retain the moisture in the skin
for longer duration. This procedure should be repeated
three times a day if possible. The appbcation of oil
prevents the escape of water from the moistened skin and
protects it from cracking. The purpose would be served
better if socks are put on immediately after Hydro-Oleo
Therapy to keep the moist and smooth condition of the
skin well protected from dust and heat.
Those persons who have ulcers or wounds on anaesthetic
hands or feet must get into the habit ofresting their hands
and feet till wounds are healed. Rest alone can help in
healing the wounds.
Post- HydroOleo Therapy Exercises
Paralytic deformities need exercises after Hydro-Oleo
Therapy to keep the joints mobile and to avoid stiflhess.
The exercises also prevent skin from contracting. Mobile
clawing fingers can be corrected by surgery much easily.
Stiff fingers and contracted skin would require extended
periods of Physiotherapy. They also involve Complex
Surgical Procedures for correction of deformities.
MCR Sandals for Protection of Ulcerated Feet
Keeping Wounds Clean
Wounds can be kept clean, without sepsis and devoid of
bad smell by using Betadine. 5 ML (one teaspoon) Betadine
per litre ofwater can make active enough solution for this
purpose. The amber colour of such solution resembles
weak tea decoction. The colour of the solution disappears
after use, leaving behind clear water. The colourless water
indicates that the solution has performed its function.
When Betadine is added to water in the Basin before
soaking hands and feet, it performs multiple functions—
Deterrence, Disinfection and Deo-dorisation. Betadine
applied directly to wounds by itself is the best and
adequate dressing medicine.
71
t
22. Functional approach
to hand surgery in leprosy
Dr. Satish Arolkar
f
Correction of the hand in a leprosy patient is more than
mere functional restoration. It is simultaneously a social
rehabilitation. It relieves him of the deformity — a symbol
of the outcast.
There is anaesthesia in the area of the affected nerve, quite
often patchy and incomplete. It therefore, calls for a
regional block. In the upper extremity a wrist block is quite
adequate. An axillary block facilitates the uses of a
tourniquet. Some of the patients requiring hand surgery,
therefore, can be operated upon without either general or
spinal anaesthesia.
Successful corrective surgery in Leprosy, in order to
restore faith in the patient, depends on his co-operation. If
the surgery is technically simple, less exacting postoperatively, in terms of man-days lost in physiotherapy,
re-education, etc., patient s co-operation in the processes
of rehabilitation becomes that much easier.
For the various methods available to the surgeon to
correct a paralysed hand, the underlying principles are
just two: (i) Static; and (ii) Dynamic.
Surgeon,
Foundation for
Research in
Community Health
Bombay
72
Movement in the hand joints is ensured by local small
muscles and distant tendons. In leprosy both the nerves
responsible for innervating the small musculature of the
hand get affected. Therefore fine movements get
paralysed. The coarse movements conducted by long
distant tendons remain intact. The result therefore is
instability at the knuckle level or metacarpophalangeal
level. This instability can be rectified by a static’
procedure preventing excess "back-bendingor exten
sion at the knuckle level. It can also be rectified by a
dynamic’ method making use of the spared long tendons.
The static method is simple. It not only stabilises the flail
M.P. or knuckle joints but also restores the metacarpal
arch so necessary to bring all five fingers together to scoop
as in "rice-eating”.
This technique can be conducted by any surgeon with an
elementary knowledge of the hand. No sophisticated
instruments are required. It can be done under regional
anaesthesia by using axillary block as a tourniquet.
Care in the design of the skin & facia to be excised alone is
essential. The elevated skin flap helps adjust correction
under vision.
A single plaster shell for 3 weeks is adequate
immobilisation.
No re-education post-operatively is required as no
tendons are transferred.
The principles underlying this technique were first
explained by Dr Surendra Pandey of Lucknow. I have only
redesigned the skin outline to streamline its advantages.
Dr Pandey’s method involves simple skin excision.
Skeptics may point to its possible shortcomings by
pointing to the eventual likelihood of stretching of the skin
and argue that the method is not best suited for the
manual labourer.
In such cases the CAR technique or Claw & Arch Reversal
combination correction may provide the answer.
In this technique the spared long tendon is used to restore
M.P. joint stability. Careful rerouting and attachments of
the slips so freed under desired tensions, reverses the lost
metacarpal arch simultaneously.
This surgery is also done under local anaesthesia, under
an axillary block. No tourniquet, no special instrumenta
tion except perhaps a tendon "tunneller” is used. No post
operative re-education is required as anatomy is least
disturbed combining and using an extensor of the index
finger compliments the procedure totally.
C\
n.
Disability Prevention
'Dread of deformities' no more! Your Cure in
Your own Hands!... Lookup!! Measure upto the
challenge!!! Week-long residential Self-CarePractice camps convincingly carried the
'Look-up' message to right quarters: To the
Patients, their families, friends and well-wishers!
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23. Leprosy treatment beyond
"self-care”
Dr. P.R. Mangalani
I was busy making notes on a Patient Card about a patient
I had just examined. I was aware someone had come in,
and had stood across my table in the clinic room. When
he called me in a hoarse voice "Doctor”, I looked up.
He was in his late forties, well dressed. I had never seen
him before. Like a statue he stood in front of me and
stared. From his expression he looked impatient to vent
out his spleen. Totally stunned, I kept on looking at him
without even showing him a seat. Even stretching of my
imagination didn’t provide a cue for the possible purpose
of his abrupt entry into my room. When he had called:
"Doctor”, that-too in a tense voice, I could make out he was
in intense anger.
"Who was that Idiot' who shouted at my wife yesterday?”
The well dressed man ventilated his anger.
Soon a reasonably dressed woman appeared in the Room.
She was Veena Verma. She was staying just at a stone’s
throw away from the Clinic. We have been treating her
since 1981.
At first she had complained of acute pain in her right
hand. We had treated her for nutritional deficiency.
*
Medical Officer
SADA Bhilai LEU
Bhilai
I did not know earlier that the man standing in front of me
was her husband. The person to whom he reffered to as
Idiot’ was in fact one senior doctor. He was not in the
employment of BSP. He was a specialist in leprology and
happened to be in the clinic when Veena Verma came to
Clinic yesterday. Because she could not give a coherent
chronology and credible account of first symptoms and
subsequent changes introduced in the treatment over
past seven years the visiting doctor had lost his temper.
Her husband was a regular BSP employee, entitled for free
medical treatment; and courteous behaviour from
doctors in BSP Hospital. He was upset because the visiting
doctor had behaved rudely with his wife.
Veena Verma though was started with treatment for
nutritional deficiency, soon could be diagnosed as leprosy
patient when she came complaining about a big bum
patch on her elbow which did not cause any physical
pain.
By this time we had introduced multi-drug, treatment for
leprosy in our Dermatology Unit at Sector IX Hospital.
She was regular for first few months in her attendance. But
whenever her pain subsided, she tended to discontinue
the treatment. Her irregular treatment continued upto
1986. Then we Shifted the leprosy unit at this new place.
Though now we were closer to her residence, for more
than a year she never showed her face. We didn’t have her
full record with us at the LEU. Because she appeared here
as a fresh case in 1987. The senior doctor had lost his
temper because neither he could lay his hand on the Case
Record nor could the patient narrate important
landmarks in her case in a coherent manner.
She was being treated last year sometimes with steroids
and now mainly with Lamprene. As a result her skin had
acquired almost chocolate colour. That had added to her
anxiety for the past couple of months. The immediate
provocation that had brought her to the Clinic yesterday
in panic, was a shooting pain in her right arm.
I had not met her husband before. May be because he did
not want to associate with the identity of his "leprosy
patient” wife in the public eye. I shuddered to think of a
husband who could never show his face for consulting a
doctor about his wife’s disease. But could suddenly jump
at his feet the moment he got a cue about her ill-treatment
by the doctor.
Whatever way I may like to explain, the neglect to Veena
Verma was a proven fact. Who is to blame for this neglect is
a secondaiy issue at the moment. Because I know, how
73
4
1
I
3
right from the word go neglect’ becomes the order of the
day for cases suffering from neuritis in our present
methods of operation. These cases do not receive proper
attention. It is not as easy to pass on the buck to the
patient. This aspect of the disease somehow gets sidelined
even under our health education programme. What is
missing is adequate awareness.
We organised a major Self-Care’ orientation in anaesthe
sia based problems like ulcers, etc. as part of the Aarohan
programme in Bhilai. But even in Bhilai, neuritis based
case management problems got side lined.
Veena Verma’s case, in no way, is exeptional. Many more
such cases can be cited. Let us take ofyet another patient
— Manikam. Manikam was a shop on his feet, hawking
clothes in the streets. After noticing a patch on his
abdomen, he consulted some private practioner. He took
medicine for some time. The patch did not disappear.
Instead more patches appeared on his body and also on
his face. At this stage his case was suspected for leprosy.
He consulted a private dermotologist. When he came to
know it is leprosy, he panicked. He started a hide and seek
game with his close acquaintances.
In the meanwhile he developed “Lepra Reaction’’ and
gradually he turned into a Psychotic case. After he
exhausted his savings on treatment; and started suffering
financial hardships, he returned to his native place in
Andhra Pradesh with the unsound mind.
I quote here a third case. Chandrakant an ambitious
young man who/some time back noticed light coloured
patches on his chest and his back. He consulted a few
doctors who diagnosed it as allergy. They obviously
treated him for allergy. After a few months Chandrakant
developed intolerable pain in his limbs. He was admitted
to a general hospital. There it was diagnosed as leprosy.
Before he could overcome the initial shock, he had alredy
developed deformities in hands and feet. The deformities
74
came on him so sudden. He showed himself to various
doctors. But did not get any satisfactoiy treatment.
All this goes to show that due to lack of early and proper
diagnosis of the neuritis type of cases, and timely
treatment of complications that arise out of incorrect
diagnosis and consequent wrong treatment, the patients
do suffer. These are lapses in management of the disease.
Most of the neural cases initially give symptoms akin to
nutritional hunger. In the absence of experience in
leprosy diagnosis, the practitioners do not take simple
tests either to check on the loss of sensation; or care to feel
the nerve inflammation.
The need of the day is to think seriously about not only the
treatment of leprosy patients but management of the
disease mainly in the context of lepra reaction, and other
complications arising out of the treatment, including
health education. Recently I heard of a case from a
neighbouring LEU where the Para-Medical Worker, when
confronted with a severe ^reaction case on his Pulse-Day
visit, left steroid tablets with the patient alongwith the
pulse dose. Not knowing the complications it might cause,
the patient consumed these tablets almost daily. By the
next pulse date when the PMW met the patient, he was
bleeding through several erruptions on his body, almost
looking like a burns case.
There is one more dimension of case management. It falls
in an area requiring combined operation of the local
community and the treatment providers. One young
man—a landless labourer—a M.B. Case under treatment
initially ignored the symptoms of neuritis. He worked on
earth work jobs. When properly diagnosed, he required
bed rest for at least one month. Local community came to
his rescue. They paid for his to and fro travel costs to
Raipur. Arranged for his indoor admission at RLTRI
Hospital; and provided sustenance for his young wife and
her child, since the patient remained out or work.
J
*
24. From Donagarh to Dongargarh
Suresh Soni and Harjeet Arora
‘Suresh Bhai, didn’t I tell you?... Now you’ve seen
it with your own eyes!’’... murmured Bhayyaji the
Chairman of the Temple Trust, just as I entered
his shop where he was sitting along with threefour other Members of the Trust. He had specially
sent for me. I was rather puzzled, not knowing the
context of Bhayyaji’s remark. Before I could ask,
he explained: "They have money for hiring Maruti
Cars and Video Camera Units ... and no money for
feeding the poor?’’ ... I could immediately make
out what Bhayyaji was hinting at. I was a member
of the management committee of the Trust and
was instrumental in making the Trust donate Rs.
3,000/- for the 10-day Mixed Group Residential
Camp being held in Dongargarh. Today was the
1st day of this camp. About 500-600 villagers and
more than 200 leprosy patients from the
surrounding villages, some of whom were to join
the Camp, had poured in the town from all
directions, amidst deafening slogan shoutings,
and drum beats, through processions. The town
was taken by utter surprise. A video-shooting
Maruti Van was moving in the vanguard of the
procession recording the moods and musings of
all that was on the move in the bearably hot
November afternoon.
“But Bhayyaji, we are the hosts”, I explained as I
was settling down in a chair. "Different agencies
are participating in this event. Just as there is
government there are other people from Delhi
who have experience in providing Patient
Education in long duration residential camps”. As
I was explaining, Bhayyaji’s man brought us tea.
Chaizyian
While sipping tea I continued: “These agencies
Peedit Sweekar Samiti
>
Dongargarh.
wanted us to play hosts to the patients. They
never expected us to meet their expenses. We re
spending on food for the patients alone.
.j; t
I I
If they had money to spend on cars and Camera
Units, they could have as well spent on feeding
the Patients”, Bhayyaji interjected. “Why waste
Trust funds? What would people say who donate
to the Trust?”
1' B s
L
as
t,
IM-
t
But Bhayyaji, they never approached us because
they didn't have money for feeding the patients”,
recalling earlier discussions I explained. “ It was
we who wanted to join hands and feed the
patients as the village people had done in the
surrounding villlages. Isn t that true?”
It was almost half an hour before Bhayyaji could
cool down.
Such reactions from the townsfolk were but
natural. They had their own ways of looking at
things. In their eyes certain things did mean
extravagance. In a way they were right. Let’s see
the way the PWD Engineer — Vermaji —
responded that evening. None had invited him to
the meeting. He came; and sat through the
discussions of his own. We were considering how
to organise the campers’ feeding gracefully, as
well as economically. After examining various
alternatives without changing the Menu, we
brought down the cost estimates from Rs. 18/- to
Rs. 12/-. The tenor of our discussions must have
influenced Vermaji. Without coaxing by anyone,
he announced contributions for one day’s feeding
costs (Rs. 1,500/-) from his Office Staff. If persons
like Vermaji viewed the Maruti Car or the Video
General Secretary
Camera Unit as extravagance, one need not be
"Peedit Sweekar Samiti
surprised.
Dongargarh.
75
Like Bhayyaji, Mr Verma also got in tune soon with the
Camp organisation.
All that was happening at the Camp was a totally strange
experience for the prominent citizens of the Town. They
had always imagined leprosy patients in dirty, tattered
clothes, with deformed limbs and ugly looks. They were
wonderstruck to see amongst patient ranks strong and
sturdy persons, hardly distinguishable from other non
patients. Their clean and tidy ways of living at the Camp
impressed them so much. Their mixing together with
other villagers and leprosy workers without any
reservations was a spectacle unthinkable for them.
Invariably they sent in their family members in the
evenings to the Camp-site to move about and see things
for themselves. One day even Bhayyaji visited the Camp in
the morning. He waited to see how campers—the patients
and the non-patients—sit together and eat their lunch. He
did not join the lunching group though. In the evening he
sent in his wife and other women folk and children from
his family to visit the Camp. As days passed the Camp
visits became a festive occasion for the people. Perhaps it
was because they were seeing the patients in a more
acceptable form. It opened new vistas in their
understanding of leprosy. Young men from the Town got
together and started supplying milk, fruits, sweets, soap,
etc. as voluntary gifts.
We had reports from different village centres earlier about
the ‘rise’ of patients in the estimation of the village elders
during the previous week—before they were brought to
Dongargarh for a Central Camp. Garlanding of patients at
the hands of village elders; receiving patients in a festive
style—with drum beats; local Rich persons giving shirt
lengths to those patients who just could not afford to
bring clean, untom spare’ as the organisers had
anticipated; feeding them free of cost with a generous
76
heart; all such reports did not fall beyond credibility limits
of the townsfolk now. However what we heard about a
reception given by one Village Headman from the Bor
Taalab area, first sounded just incredible. But it was found
true. Here the village headman and his wife literally
washed the feet of 20-25 patients whom they had invited
for lunch. They did it in the true Chhattisgarhi style of
traditional hospitality. It was difficult for us to reason out
the underlying motivation. But soon such reprots became
common place. Gradually they trickled through different
layers of the town; and resulted in bringing the townsfolk
including our Bhayyaji — closer to the cause of leprosy
patients. To Bhayyaji Maruti Van no more remained an
‘issue’.
It did not take us long to realise that Bhayyaji’s sharp
reactions earlier, actually reflected his displeasure at our
indulgence in defiance of the traditional leadership. Once
the camp was over and accounts were finalised, our cost
effective management of feeding, came in sharp focus and
earned us acclaim even from the old stalwarts. This
pacified the uneasiness caused by the youthful defiance
earlier. “Peedit Sweekar Samiti” — the committee which
managed the Camp, acquired new respectability in the
eyes of even the old guards’ like Bhayyaji.
What the Camp left behind for the people of the area was a
new role’ for the non-patients community, a new
understanding’ of the disease’, and a new image’ for the
patient.
People not only saw, at least in a large majority of them,
clean and respect evoking persons, but also sensed the
depths of their longings for company, for good life, for
healthy living. The youthful amongst the patients were
prepared to pay the price for making extrovertness the
hallmark of their life. They revealed their patient identity
>
e
without any fear. They played together. They shared their
hopes and fears. The way they responded to practicals of
Self-Care’ — in order to confront the onslaught of
anaesthesia, did leave behind lasting impressions. A few
amongst the patients effectively played the roles of the
Teacher', and the Educator . It was an unforgettable
experience.
Within two-three months, yet another camp came our
way. It was organised at Purena under the same banner of
“Peedit Sweekar Samiti”. New insights gained at
Dongargarh Camp were put into practice here far more
convincingly. Management initiatives were seen vastly
diffused. A new Worker-Patient-Village leader combine
emerged on the camp management scene. We didn’t wait
for Trust to make donations. Contributions came forth in 1
or 2 kgs. of Rice but from a larger multitude.
We returned from Purena with new awareness of
combined strength, with redoubled faith in ourselves and
our capabilities.
Yet another two months and the new awareness of
strength burst its seams, when it came to parading the
“new-patient-identity’’ openly in the streets of Bhilai. In a
specially charted passenger Coach, flaunting Patient
Badges on their breasts, conscious of their inner
strengths, 62 patients joined the famous Solidarity Run'
— Marathon of Bhilai, on 4th April: and jostled together
with non-patient civilians in a mood of gaiety and new
awareness.
The Coach returned to Dongargarh from Bhilai during late
night hours leaving their ill-person’ identity behind for all
time to come.
77
25. Leprosy control from across
the drawn lines
Dr. T.P. Sharma
National Leprosy Eradication Programme is being deve
loped and implemented on new lines in Rajnandgaon,
more particularly in Dongargarh; and subsequently in
Durg. It opens a new chapter in a highly stigmatised
sphere of "health”. Our limitations in providing effective
preventive or protective cover to the community at large
against leprosy is one of the factors that explain perpe
tuation of stigma about this disease. But let us not gloss
over the fact that this is just one amongst the many other
factors that have escaped our attention. It a sphere of
public health where social ima|e of the disease and its
cure remains a major stumbling block, group methods of
work should have remained a logically sound strategy. A
diamond is cut only with a diamond. Recent experiments
in community participation in the two districts of Madhya
Pradesh underline the scope for renovation of our
methodologies.
disease deeply ingrained in the mind of the community,
including that of the medical profession.
Whereas the Programme design talked about concerted
attack on all these problem fronts, we could do precious
little because at the operational level it tended to work
only in a piecemeal fashion.
The problem of worker motivation and slack supervision
was not so much related to administrative design and
procedure. It was embedded more in the 'secluded” style
of functioning of the control system at the outreach—
totally cut off from the social mainstream. Rather subdued
by social and professional value systems. Symbolic of this
is the "Road-side Clinic”. It connoted secrecy as well as
social distance. The. distance’ nurtured by professional
circles is only obverse side
of the same coin. How to
The problem of worker motivation and slack
put an end to this seclu
supervision was not so much related to
sion’ was the crux of the
administrative design and procedure It was
problem that confronted
embedded more in the ‘secluded style of
the administrative design.
Director
Health &
Family Welfare
Government of
Madhya Pradesh
Bhopal.
78
Problems confronting the
programme are menifold.
These appeared insur
mountable. In the admi
nistrative parlour it was
functioning of the control system at the
lacklustre field worker
How to overcome the pro
motivation; and slack as
outreach
blem of "seclusion ”? Can it
well as narrow-visionbe resolved by formal integ
supervision. At the patient level it was fear of ostraration
of
the
control
system
with general health? The
cisation; and oscillations in the patient response, who
administrative
opinion
has
remained
divided on this
needed early diagnosis and regular, uninterrupted
issue.
The
controversy
over
whether
the
vertical system
treatment. At the community level it was the social
would
be
more
effective
or
the
horizontally
integrated one
resistance to reinduction of non-infective and cured
tends
to
develop
into
an
academic
debate
in view of the
leprosy patients back into the social mainstream. All these
basic
character
of
the
problem
—
the
problem
of seclusion
were but outward manifestations of the problems that
at
the
peripheiy.
confronted the deliveiy system in leprosy. The basic
problem, however, revolved around the “Fear” of the
There is no point ia advo eating horizontal integration of
leprosy control with General Health on a formal basis.
Formal integration would pose more problems than what
it would solve. How the problem could be tackled at an
informal level was illustrated efiectively in the district of
Duig. Here Intensive Therapy under MDT was planned
and executed under joint auspices of the community, the
district administration and the health administration.
As we have seen, community participation helped
accomplish a task in just over.two months which would
have normally taken more than two years. .Maybe
integration attempted here was on an ad hoc scale, but the
joint campaign did involve integral man power operations
at an informal level.
Reaching the drugs expeditiously to the patient was but
one of the objectives. Genuine patient care which
included problems posed by reaction and nerve
involvement cases, required more concerted application
of combined energies. Such combined application, in
turn, creates demands on high degree of field worker
motivation and also on an inclusive style of supervision.
These are critical factors to ensure prevention and arrest
of deformities as well as disabilities. Dongargarh Block in
Rajnandgaon District has handled the task in a superb
way. Here worker motivation is found at its best because
distances between the field worker and the patient on one
hand and the field worker and the general public on the
other have narrowed down to almost zero level. Even the
distances between the patient and the community are
withering away fast. It is the social environment of this
nature that is found more conducive to promotion of
“integration" which is simultaneously informal and
functional.
That this can happen within the distance conscious’
administrative system by itself carries conviction to an
otherwise cynical mind.
We are used to working in such integral fashion during the
campaigns’. Our campaigns, besides being ad hoc in
character, represent “one-shot” approaches. Whereas the
highly stigmatised field in leprosy requires release of
social forces on a continuing basis. Notions of authority
and authority-centred hierarchy, run right through the
organisational design. We may have to give a serious
thought to examining the scope for non-hierarchical
accommodation of community participation on a
continuing basis.
A comparative look at the manifest difference in quality
that field worker motivation and perceptive as well as
inclusive supervision make at the periphery, is convincing
enough. But in terms of assessing feasibility of induction
of such inclusive methods and ensuring measurable
outcomes, which is mainly the administrative concern, it
calls for studies in depth.
In the sphere of Leprosy—more so because of its social
denominators-qualitative aspects of field work are of
significance to performance appraisal. The fact that only a
few workers could bring about a high rate of voluntary
reporting of fresh cases cannot be subordinated to our
concern for measurable outcomes. It has been observed
that only field workers with effective rapport with the
community and the patient, have succeeded in
maintaining higher rates of patient attendance on pulse’
dates. The character of influence underlying voluntaiy
reporting of fresh cases has further underlined the
qualitative dimensions of field work. For genuine
qualitative appraisal, additional data on mode of case
79
reporting acquires added significance. Fresh case
reporting based on patient to patient communication or
community leader to patient communication, will be
more valuable for eventual integration of health services at
the deliveiy point.
From the reports on patient showings at the Bhilai
Corrective Surgeiy Camp, patient or community contri
butions towards the Operation Fees and field response to
such insistence on collaborative effort were indicative of
qualitative aspects of field work and of the depth of field
worker involvement. Such indicators need scrutiny before
thoir integration in administrative procedure is taken up.
I am told that deep, qualitative and inclusive involvement
of the field worker in patient care’, is proving helpful in
80
giving new content and vision to “patient-care-centredsupervision". For the first time the system has started
paying concerted attention to anaesthesia based prob
lems of the leprosy patients which tend to keep them
locked lifelong in the disease psychosis.
The new focus on prevention of deformities has
highlighted the need for continuing community involve
ment. Because it is their involvement alone that holds
promise of bringing about qualitative change in field
worker responses. If these trends are allowed to progress
further, the day may not be far off when the leprosy
programme would be in a position to fix its eyes on more
august preventive aspects — goals which hold promise of
segregating leprosy from the ‘dread’ of deformities.
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26. Path finding in Dongargarh
Dr. G.P. Mishra
The Date—17th March 1977. Place—Dongargarh, district
Rajnandgaon. Efforts were on to explore more effective
ways to promote community education for leprosy
eradication. Indeed, we were bitten by a strange thought, a
new idea—community education through comprehen
sive service. The idea was presented in the form of a query.
What will help change the attitude of the community
towards leprosy?... Width of knowledge or depth of
sensitivity and feelings? Does wider sweep of knowledge
increase sensitivity?
District Leprosy
Officer
Rajnandgaon. (M.P.)
clarity would flow in. Our obsession was for search! About
forty leprosy workers of different categories, resource
persons, and 72 social communicators from villages
around, both, men and women, joined in. Basically it was
an exercise in togetherness—a novelty for the workers as
well as the Social Communicators. They were determined
to live together like a family, for ten long days. They
differed in their notions and beliefs about how the disease
occurred, how it spread. In certain cases the beliefs
clashed, or mutualy squared each other. No wonder
Feelings of loneliness experienced by the field workers
common understanding on how to eradicate leprosy
was another problem that was hovering high on our
remained elusive. Some believed leprosy was a curse of
thought world. The problem was raised during the
God. Whereas others thought of it as prone to spread
workers’ training at Khatia, in December, 1986. "We reach
through common bath in village ponds. Yet others
villages after cycling miles and miles. Nobody offers even a
believed: it spread through skin contact. In the ultimate
glass of water. Who will improve our lot? What will help
analysis it became clear that none knew about how it was
pull us out of this pitiable
transmitted. Similar diver
situation?”, the workers
gent
beliefs prevailed about
This camp was organised only with the effort of
had asked. Once again the
its
“
cure.
’’ No patient was
Government workers and the villagers. Secondly
new thought offered a
considered completely cured
the amount spent on the camp came solelyfrom
strange reasoning: “Your
unless his deformity dis
the Government funds and from the donations
spring role is the root cause
appeared. But such notions
of your loneliness! With
made by the villagers.
were questioned by per
draw from the case detec
sons like Prem Lal. He was
tor role!’’ It was difficult to
completely cured and yet
accept the new proposition. Equally difficult was to push
had continued clawing’ of fingers.
it aside, to ignore it as absured. “Let us explore and find
The controversies kept on mounting. So was the
the truth ourselves.’’ This was our response.
excitement of living together, working together. With the
The search began in all earnestness. As a first step a tensupport and co-operation of social communicators, work
day Workshop was organised. A Workshop on Mobiliza
on diagnosis of leprosy started right in earnest through,
tion of Community Resources for Leprosy Eradication.
once again, a novel medium of Skin Disease Diagnosis
Although the preparations had started a few days in
camps organised at different places. The camps were an
advance, neither the Workers nor the Resource Persons
open affair. Yet none hesitated in coming forward.
were quite clear about the outcome. None was sure if at all
Openness became an order of the day. By and by it became
85
clear that there was no need either to hide or to spite
leprosy. This idea gained ground. With it grew a new
understanding about this disease. Once spite gave way,
hesitations crumbled. This disease, was accepted as any
other disease. Participants argued, developed their own
analogies, arguments to prove that persistence of
deformities after cure was nothing more than marks left
behind by Small Pox. Gradually common understandings
gained ground. What really gained weight was ‘openness’’
in diagnosis, and sturdy defences of their changed
behaviours.
Alongwith it, began the battle against the dread caused
by deformity, almost a war on fear’. Two women and one
man, three disabled/deformed cases appeared on the
scene. These three cases had suffered neglect’. Care after
cure had not reached two' of them. Whereas the third',
still an active case’, had developed anaesthesia. All the
three were starved of affection and care'. Massage
sessions started. First at the workshop. Then on open
platforms in the midst of villagers’ large gatherings. By and
by the workers realised the magic spell of massage
sessions. Fear was on the run. Villagers came forward and
started massaging the patients with their own hands. Two
women workshop participants massaged the patients
suffering from deformity and neglect without any
hesitation. The event almost pierced through the walls
raised by fear'. It helped the participants in getting rid of
their hesitations. Now the workers realised the meaning of
the picture: "Gandhiji massaging Purchure Shastri ”. What
a force this weapon wielded in changing attitudes of
people.
A new hope and faith dawned on the workers. They
realised: society would support them if they approached
through the medium of service. They could experience
the strength of the antidote for their feelings of loneliness.
86
Service brought them friends and svmpathisers. Work
shop participants and some persons from the general
public, some respected persons from the society, all
worked together leading the massage sessions to
resounding success. Indeed, it turned out a major step
forward.
First follow-up step was taken by a worker Mr S.M. Naidu, a
NMS stationed at Khairagarh. Motivated by his experience
during the workshop he organised a service-camp in his
area. It was a bold bid. A new era of public sympathy and
active co-operation dawned. Out of this camp started the
MDT programme in Khairagarh. People’s participation
boosted Naidu’s courage and confidence. First MDT
Intensive therapy programme on the total initiative of the
NMS became a reality.
From the success experience of Naidu, was bom a new
idea. Why not organise one day duration composite
service’ camps at the Drug Delivery Points (DDPs) in
different NMA (Para-Medical Worker) areas. Once again
NMA Chandrakar’s area was chosen because of his
capacity to take initiative and to provide sustained follow
up. The experiment started. Under this experiment a
composite team’ of treatment providers and people from
both middle and higher classes of society, spent time with
patients, listening to their woes in an attempt to remove
fear from each other’s minds. In the process people also
realised how their wrong notions about the disease have
played havoc with the patients. In a spirit of seeking
forgiveness for their wrong doings they came forward with
hands out stretched for sustained co-operation.
Such one day camps on experimental basis were held in
villages Manki and Somni, in Somni sector. During these
camps one more aspect of patient-suffering came to light.
A patient named Jeta Ram who had ulcers on his feet was
given ointment and bandages and medicinal powder by
our Physio-Therapist on previous pulse date - one month
back The patient was veiy old. His wife at home was blind.
No wonder the patient had kept the medicines and
bandages issued by the P.T. safe inside his turban for the
whole month. No doubt the Physio-Therapist had fulfilled
his obligation by issuing requirements for bandaging
ulcerated wounds. But this did not materialise actual
treatment. The suffering patient remained devoid of the
treatment.
This incident raised a fresh issue. Doing routines of the job
unimaginatively did not produce results. Merely complet
ing the rituals is not service. Rendering the service in a
manner that generated a sense of responsiveness in the
patient was more important. Workers’ attention was
forcefully drawn towards outcomes of their service inputs.
In Somni and Manki we experienced a new sense of
strength. These one day camps opened before us a
panorama of patient s capabilities. Depth of their
knowledge about leprosy, in some cases, surpassed our
understandings. It developed a sense of respect for the
patients. Besides knowledge, there was depth of feelings
and experience too. Their method of explaining things
was simple, facile and effective. They needed no posters,
films or slides. No elaborate preparations required. Their
style was simple. But far more effective than our
cumbersome methods. Playing the symptoms present on
other patients in the group, articulating their cure’
experiences and early hesitations. It all meant effective
communication. Why not adopt such patient-experience’
based methods of education which were an effective
medium? From here emerged the concept of "patienttumed-educator” for conducting group discussions.
Using patients in community education became an
attractivfe proposition for our workers.
New experiments were leading to new experiences and to
uncovering of new resources. With passing of time new
techniques for solving our problems started emerging. A
belief developed: the only way to march forward is to
experiment and to adopt new experiences for solving
problems. The belief had taken deeper roots. This spirit
opened a new chapter and a new proposition came
forward. Why not give Intensive Therapy to all MB patients
by keeping them together at one place for fourteen days?
Drug distribution plus education. All the workers and also
the resource persons endorsed this plan. Work on the new
plan started on 16.11.1987.
To begin with, the patients were brought together from
surrounding villages for five days in five DDP villages. The
workers also stayed with them. Learning through mutual
exchange of experience followed. The villagers made
arrangements for their boarding and lodging.
While organising the DDP centred five camps, simul
taneously sub—camps of two-days duration were
organised in Central Villages. In these villages, too, the
leprosy workers and MB patients under MDT stayed
together and ate together.
In the process team leaders, workers and patients
developed emotional attachment with the villagers. The
group was expanding day after day. In the end, on the fifth
day a farewell function was arranged. With heavy hearts
the villagers bade a fond farewell to their guests. They
were seen off to Dongargarh camp through local send off
ceremonies accompanied by music and processions.
Then on 20.11.1987 all the patients and workers came to
Dongargarh for a central camp. Drumbeats, processions,
slogan shouting workers and patients paraded the streets
of this township. A strange spectacle for the townsfolk.
Here at Dongargarh a new committee had been
constituted by the towns people. It was named as 'Peedit
I
Sweekar Sewa Samiti”. It was this society who were to
make arrangements for boarding and lodging for all the
patients and the workers for the remaining ten days of the
Intensive Therapy.
Through this new exercise in togetherness the patients as
well as workers received a new direction. How deformity
occurred? How and why ulcers occurred on feet? Could
we prevent them? Various questions relating to defor
mities were raised and answers to these questions were
searched. With the guidance of Dr Gude and help from our
Physio-Therapy Technician, Mr P.T. Khan, other workers
learnt new methods of preventing and treating these
deformities. Thrice a day Hydro-Oleo Therapy practicals
were organised during the camp. These exercise turned
highly motivating influence on patients as well as workers.
Both realised that the simple processes of hydro therapy
had a great potential for preventing occurrence of
deformity. Thus they came to know about newer ways of
serving the patients. This was possible only because of
valuable guidance provided by the specialist.
A new enthusiasm and self confidence developed in the
workers. Why not organise these camps ourselves? This
was their reaction. We can organise such camps on our
own, was the confident response. Do we need guidance
from outside any more?
Approached January, 1988. The workers unanimously
took a decision to hold one Intensive Therapy Camp in
village Purena for the patients from Mohara and
Dhundera Sectors. Workers from other areas joined
hands. With the unreserved co-operation from the
villagers of all nearby villages what came about was a
splendid spectacle — the dream world of tomorrow.
Here a Purena Branch of Dongargarh's Peedit Sweekar
Sewa Samiti’ was formed. From 6.2.1988 onwards five DDP
88
level camps were organised at different places. The main
Central Camp was organised in Purena from 12.2.88 to
20.2.88.
This camp turned out significant from several angles.
Firstly, this camp was organised only with the effort of
Government workers and the villagers. The amount spent
on the camp came solely from the Government and from
the donations made by the villagers. The Government
funds used for the purpose also remained well within the
limits of what was normally available for such occasions.
This camp was more successful than the camp held
previously at Dongargarh during November. Here the
participating patients admitted that they were benefitted
more. The dividing line between the patients and the
villagers had completely vanished. It was difficult to
recognise who was the patient and who was not. They all
mixed together without any reservations. This camp
having been organised entirely through workers’ effort
increased self confidence of the workers.
The success experience of Purena led to yet another idea.
Why not guide the counterparts of these workers in other
LEU’s? A decision was taken to make a start from the LEU
Kawardha.
A meeting of all the workers of Kawardha was held.
Eventually a training camp was organised from 5.4.88 to
9.4.88 where they themselves functioned as teachers as
well as trainees. Learn through Service’ was the motto
before the campers. The in-service training in Kawardha
was imparted in the shape of in-group training.”
The news of success of Dongargarh camp followed by the
heart-warming news of Purena camp, reached Khaibarna.
It inspired the workers to organise a service-cum-training
camp there with the co-operation of other workers.
Success begets success. Now it was from Khairbana to
Uperwah. Yet another successful three days “Self-Care”
camp was organised in the village Uperwah with the help
of villagers. Here, too, villagers made arrangements for the
stay and food of all the campers.
The journey commenced in March 1987 in search of
effective methods brought forth rewarding outcomes.
Most significant of these outcomes is the strong
awareness of our inherent capabilities. We now realise:
Leprosy cannot be eradicated by drugs alone. The
patients need service and a new understanding from the
society. A change in the attitude and outlook of the
society. Society’s traditional attitudes have all along
functioned as a barrier between the patients and their
helpers. Unintentionally this attitude has resulted in
preventing patients from availing the treatment during
early stages of the disease.
Now the society also realised that though unintentionally,
it has faulted. The community action in the form of
support to “Service-Camps” which we witnessed during
the year is indicative of the new moods of repentence and
of a new desire to undo the damage.
89
27. This happened in Durg:
exercise in community participation
Dr. S.L. Gupta
Anti-Leprosy activities were limited to only leprosy staff till
2 years ago. These were failing to make any dent on the
enormity of the task of community education. Several
wrong notions and beliefs about this disease still persisted
in the society. Indeed, to overcome this lacuna, what was
called for was not so much the education but the re
education of the community. Community’s involvement
in the processes of re-education which were emei^ing on
the horizon of leprosy in Madhya Pradesh, tended to show
a way out in overcoming the limitations of staff-centred
approaches.
District Leprosy
Officer
Durg
90
involving the community in the Leprosy eradication
programme. Shri R.K. Verma—the NMS of Berla Block-took
the lead in organising the. Intensive Therapy Residential
Camp from 2.11.87 to 15.11.87. He was anxious to prove his
worth to higher-ups in the department because, he had
not received his seniority promotion that was due to him
while others received it. With the help of Janapad
Chairman and through involving other community
leaders, he managed to provide cost-free meals to all the
101 patients who stayed at the camp site throughout the
14 days.
Limitations of staff-centred activities, also, were becoming
In due appreciation of the initiative and daring of the NMS,
obvious in the State where a bold experiment was
the Director , PH & FW, M.P. announced a Prize of
underway to introduce new Multi-Drug Therapy through
Rs. 101/-to Mr. Verma.
replacing old Dapsone-based monotherapy. Effectiveness
Berla Camp ensured sure attendance of patients for the
of the new drugs depended upon rigid compliance of the
daily Drug Delivery in the presence of the Doctor. Besides,
treatment
regimen.
It
the camp provided a gol
meant time consciousness
The new experiment saved government
den opportunity to pro
and also regularity.
approx- Rs. 9,000/- to Rs. 10,000/- per circuit
mote education of the
Government of India guide
patients regarding the pres
(Rs. 3,000/- to Rs. 4,000/- on petrol and oil;
lines required MDT to be
cribed drug regimen and
and Rs. 6,000/- to Rs. 7,000/- on DA. to
administered through cir
about
involved "Self-Care”
workers). Coverage of one Rlockfor Intensive
cuit planning which re
of the ulcerated hands and
Therapy involved two and half circuits.
quired almost one year to
feet. It also ensured coming
complete the Intensive
closer together of the pa
Phase in one Control Unit with a population of about 4
tients and the community. Instead of ostracising the
lakhs. This was challenging enough task for the staff as
patients, now the community was engaged in providing
well as for the well wishers of the programme in the
"care”. To the community it meant overcoming wrong
community. Ensuring rigid "patient compliance” and
notions and unfounded beliefs about leprosy. They gave
regular attendance over one full year at the Drug-Deliveryrespect to the patients, intermingled with them. This
Points (DDPs), month after month, as envisaged under the
meant a totally new experience to the patient as well as
GDI guidelines, required to sustain undiluted worker
the community. In no small way it worked the same way
motivation round the year.
for the Field Workers as well.
We thought it necessary to meet the challenges by
The new experiment saved government approx. Rs. 9,000/-
to Rs. 10,000/- per circuit (Rs. 3,000/- to Rs. 4,000/ - on petrol
and oil; and Rs. 6,000/- to Rs. 7,000/- on D.A. to workers).
Coverage of one Block for Intensive Therapy involved two
and-a-half circuits. There are 4 Blocks in one Leprosy
Eradication Unit.
Under the GOI Circuit Plan, it would have taken three-anda-half months to cover one Block with the new drug. What
required three-and-a-half months, was completed under the
Intensive Therapy Camp within just 14 days. Expeditious
delivery of drugs to the patients in itself was a yeoman
service.
The message of rapid control of infectivity through
bringing together large number of patients for delivery of
the “new” Drug spread to other fireas in the District.
Community leaders from these areas,who visited Berla
Camp, worked as catalysts. With some spadework by the
ECU staff, the idea of Leprosy eradication through
community involvement, gathered momentum.
Next Camp at Arjunda came about with a big bang. As
against 5-Sector coverage at Berla, 16 Sectors were
covered in Arjunda. This ensured expeditious treatment
to 401 MB cases. Whatever provisions community leaders
brought forth for feeding such a large gathering of
patients, when converted in its rupee equivalent, the
amount would come to a staggering figure ofRs. 1,00,000/-.
Arjunda Camp, organised during 7th to 20th of December
1987, was marked by one more innovation. Here patient
education covered “Self-Care” in a far more cogent form.
Daily practicals of Hydro-Oleo Therapy (HOT), introduced
during the camp, exerted highly motivating influence on
ulcerated patients. These exercises gave diem a sense of
confidence about controlling the damaging influence of
anaesthesia. The ulcerated patients practiced the HOT
exercises thrice a day,, throughout 14 days.
Active participation of the local Block Development Officer
and his staff in camp organisation was yet another
redeeming feature of this camp.
Intensive Therapy at Arjunda proceeded on different
lines. A striking feature of organisation of MDT in this area
was intense involvement of the PHC staff in both
preparatory as well as the implementation phases.
Last of the series of Intensive Therapy Camps in Durg
district was organised at Bemetra, from 17.1.88 to
30.1.88. The Camp at Bemetara besides covering all other
previous features of community participation, added a
few new dimensions. Food for 261 patients came from 27
villages, two or three villages grouping together to feed the
campers on different days.
Keen interest taken by the Sub-Divisional Officer and the
local MLA remained the salient feature ofBemetara Camp.
They worked day and night for construction of latrines,
bathrooms, and for ensuring food and water supply to the
campers.
Daily cultural programmes arranged through participa
tion of local talents was a special feature ofBemetara. Here
local community donated sets of 1 Lota, 1 Thali, 1 Dress
and 1 Chaddar to all patients and a pair ofMCR chappals to
the needy patients. Expenditure personally incurred in
favour of this camp by the local MLA, ranged in the
neighbourhood of Rs. 40,000/-.
Dalli Rajhra Mahila Samaj helped the programme by
organising skin disease diagnostic camps. Three such
camps were arranged by the Mahila Samaj during 1986-87.
91
It has now decided to organise 6 more such camps during
the year 1988-89. It also distributed 50 pairs of MCR
chappals; and has decided to distribute another 60 pairs
during the current year.
A team of District Leprosy Officers comprising Dr. Tripathi
(Gujarat), Dr. Chopra (Himachal Pradesh), Dr. Bumswal,
Dr. Hameed and Dr. Shrivastava (Uttar Pradesh) who were
•attending training at RLTRI, Raipur, visited two DDPs on
pulse days. They were highly impressed to see local
community mixing freely with leprosy patients. In a radio
talk given by these DLOs — AIR — Raipur, they high
lighted the significance of community involvement to
eradication of Leprosy.
4
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I
28. Pivotal role of PHC in the follow-up
to MDT intensive therapy
Dr. K.L. Bhandarkar
M|
F
/
■
Fear Removal’ is the only effective treatment for leprosy.
The fear dwells in the minds of patients and the general
public. 11
It uuuiu
could be
MC auun
seen even
even 111
in me
the minds
nuiiu^ U1
of doctors
UUUlUls in
in
certain cases. The 14-day ."Intensive Therapy" (fully
residential) Camps organised through community participation in certain areas of Durg during NovemberDecember 1987, indeed helped in minimising the Fear. It
also facilitated image lifting" of the leprosy control
programme in the eyes of all the patients, the general
public and the doctors who had the advantage to observe
the process of conscious intermingling of patients and
non-patients.
Preparatory to Intensive Therapy, a Survey for identifica
tion of new cases was conducted by involving MultiPurpose Workers of Dhamdha PHC* As a result the case
load increased from 712 to 827 in the Block.
December-January was the coolest month of the year,
even then attendance at the Drug Distribution Points
(DDPs) was about 70% to start with. This shot up to 95% in
just 2 days. The increased attendance level was
maintained till the end of the I T. phase, thanks to the
bright image developed for the new drugs under MDT,
and also because of the change in psyche created by the
Residential Camps organised by the Community.
Once the intensive phase was over, it was the turn of
"Pulse” on fixed dates, during fixed hours and at fixed
points. It was a task which called for planning and
coordination with other general health personnel.
Medical Officer
PHC, DhamHha
Durg.
Maintaining high levels of patient attendance at DDPs on
Pulse Therapy days, once every month through
contacting the patients just one or two days in advance, is
a strenuous piece of work if it is to be shouldered by the
‘Primary Health Centre
Leprosy Field Worker (NMA) alone. Generally the Patients
are spread over 20 to 25 villages in one NMA area (Sector).
Besides the stress and strain involved in maintaining high
attendance, the reluctant cases pose yet another problem.
In both these spheres, team-work of MPWs* (Male &
Female), Village Health Guides and trained Dais (the
traditional Birth Attendants) and the NMAs would play a
crucial role in relieving stress and in making the drug
regimen compliance a functional reality.
In each PHC there are some villages with abnormally high
bacterial load. A village in Dhataidha PHC—Pendri—with a
small population of about 423, has 23 cases on the LCU
Register with the prevalence rate shooting up to 54 per
thousand population as against the average of7 or 8 in the
rural areas of Durg. Villages like Pendri need a close
surveillance. This could be ensured through winning the
confidence of villagers 'through organizing repeat skin
diagnostic camps, thus helping cases which remain in
hiding to come out and move closer to treatment.
Another equally important aspect of control work relates
to follow-up of cases with deformity and anaesthesia
based disabilities. Co-operation of general health Field
Workers could be of considerable help in controlling and
preventing damage to limbs of Leprosy patients. But then
it would be reasonable to expect reciprocity from the
NMAs (Non-Medical Assistants) and the NMS (Non
Medical Supervisor) of the Leprosy system. They would
have to come forward and extend helping hand in genera)
health programmes.
In monthly staff meetings leprosy staff should remain
present to orient the general health staff regarding
detection of leprosy cases; and to exchange notes with
them regarding their own problems in the field. They
’Multi-Purpose Worker
93
could also inform about the dates of Pulse Therapy and
give lists of problem (leprosy) patients in villages covered
by respective MPWs.
Whenever the MPW visits a house, he could very well
enquire with the community about leprosy and about the
regularity in drug dosages by the patients. If there is any
problem, he could note it down and inform the concerned
NMA.
Just as in ‘Global Eradication of Small Pox’, 'Zero Targets’
could be developed for groups of school children. The
children would do a commendable job in searching out
94
early symptoms of leprosy in schools. General Health
Workers who even otherwise approach schools for their
own work could be of help in identifying leprosy cases in
early stages.
BCG vaccination is being routinely administered in PHCs
under the UIP (Universal Immunization Programme) for
children from 0-1. This 100% immunization programme
will help in providing diagnostic orientation in Leprosy to
mothers. It should therefore, be made obligatoiy on the
NMAs to remain present .in immunization sessions in
villages, more particularly to bring children of Leprosy
"contacts” to these sessions.
29. Community in action:
the focal point for integration
Dr. B. Devangan
A broad-based meeting convened by the Chairman of the
Gunderdehi Block Janapad marked the formal beginning
of organisational work for the camp. Invitees for this
meeting included Chairman of the Gram Panchayats in
the Block the Members of the Janapad , Women active in
social, cultural and religious life of the community,
prominent citizens, Medical Officers of the PHC and
Health Workers of the General Health System. The idea of
bringing all M B cases together in a Residential Camp was
first mooted at this meeting, and a formal Committee —
'Gunderdehi Leprosy Eradication Samiti’-was set up with
sub-committees responsible for looking after various
facets of the Camp life.
Prior to such formal organisational effort, considerable
spade-work had gone in during the previous month.
Though the patients attended the Camp from 7th to 20th
of December, collaboration from local organisations like
Rotary Club, Women’s organisations working in the field
of Development of Children, Business organisation like
Indo-British Fertilizers Ltd., the District’s Agricultural
services set-up, etc. were the real backbone of educational
activities. The message of introduction of a new effective
drug could be spread far and wide largely through the
training programmes organised under the aegis of these
local organisations.
Medical Officers and the Health Workers of the PHC were
on their feet throughout the month ofNovember, assisting
the NLEP field workers in updating the Registers of MB
cases for administration of MDT; in expediting the Survey
detection of new cases and in the preparation of Patient
Cards.
Medical Officer
P.H.C.
Gundardehi Block
Durg
Out of 439 M B patients on the Treatment Register, 402
joined the Camp. Total responsibility for their feeding and
stay rested on the shoulders of the local Samiti. It was a
massive mobilisation effort. It involved collections in kind
as well as in cash. It also meant lining up the manpower
required for smooth operation at the Camp. In terms of
Rupee equivalent, the local resources mobilised for this
purpose amounted to not less than Rs. 125,000/-.
Looking at the massive release of people's energy during
the organisational processes of the Camp, one question
often came to my mind: Why did the people work so hard
with no frown ever to be noticed on their face? What made
them remain active almost 12 to 14 hours a day without
any respite? Were they out to please their local leaders?
Were they currying favours with the influential officers of
the area who mattered in moving their papers faster?
Were they out to please the Doctors in the General Health
System to ensure earnest and prompt attention in health
matters to their kith and kin ? A cynical mind would be
inclined to give the answer in the affirmative to all these
questions.
But I asked myself, were they right in jumping to such
sweeping conclusions? My own answer to these
questions, however, would have been in the negative. Not
because I formed the flesh and blood of the organisation
for the Camp. But because I too, had worked as other
people did. When I ask myself: Did I work to please
someone else — my bosses in particular? The answer that
comes to my mind is both Yes’ and No’. Initially, during
November when I worked for the camp preparatories, I
was meeting a service’ obligation. I was on the look out for
a pat on my back from my bosses. The systems-man in me
was active.
But once the Camp started functioning, and I witnessed
the phenomenon of patients and non-patients mixing
together without any reservations, a phenomenon so
difficult to believe unless seen in person, intense
95
questioning started disturbing my mind. My hesitations
which were hiding somewhere deep down, about the
infectivity factor in leprosy treatment started causing
uneasiness. My professional and departmental service
roles apart, I realised, I was a social being as well. Why
couldn't I discard earlier my self-preservation concerns in
common with the other multitude in theCamp? What was
preventing me from presenting myself to leprosy
eradication work? As the other multitude was engaged in
doing now without looking out for favours? Was it the
systems-man’ in me bound only by the defined job
charts? Didn’t I have any obligation towards the leprosy
patients who have been subjected to endless wrong by the
society for no fault of theirs? Was it only because I was a
systems-man?
The answer,, perhaps, was 'yes'! This 'answer' emerges
more forcefully today, as I am once again back in the
saddle, tiying to ride the system horses. Once again
96
leprosy recedes in the background. The usual concerns oi
salary scales, incentives, duty charts common to
departmental ways of thinking take their precedence.
Leprosy becomes a problem once again to be tackled
within the four comers of hierarchicabnorms of working.
Problems posed by salary’ differentials, difference in
mobility facilities and monetary incentives, grapple us
once again. Leprosy or no leprosy, it hardly matters to the
mind! One may feel sad about these faces of work life. But
they are the reality.
Mind fails to find a way which will help pool manpower
resources in the gigantic task of mobilisation in the
interest of leprosy eradication work A sad thought makes
room in the mind: so long as we remain hidebound to
notions of formal integration of the leprosy control system
with the one operative in general health, the solutions
would remain as elusive as ever.
30. Inching towards high-rise
credibility*
Nehru Sharma and Jitendra Kalchuri
I
I
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In our work life of over a decade we had rarely
seen leprosy patients engaged in discussions
with other patients. They generally led an isolate’s
life. Whatever social life they have had remained
confined either to members of their own families
or to close circle of friends. This was our
experience about group life around leprosy
patients. Why did they shun group life with other
patients? It was difficult for us to reason out. But
we knew for certain it represented a common
pheno-menon.
No wonder expression to emotional hang ups of
these patients remained supressed.
However in recent months we have been
observing a perceptible change. Patients spend
ing time together, gossiping whenever they meet
at Drug Distribution Points and engaging
themselves in lively discussions, is becoming a
common sight. We consider this development as
a major breakthrough in patient’s otherwise
despair ridden, closed, circumscribed, personal
life.
Non-Medical
Supervisor
Dongargarh Block
Rajnandgaon LEU
We checked these observations about the
breakthrough with our other colleagues. They,
too, were inclined to share our assessment. The
real import of these changes is in fact a reflection
of community’s overall changing appreciation of
the disease with particular reference to its
curability; and their eventual movement toward
rejection of old notions of patient centred life
long hazard of disease transmission.
The fresh and substantive in-flow on new cases at
Drug Distribution Points (DDPs) in recent months,
Tree style rendering from original in Hindi
we are tempted to relate to the breakthrough . In
Dongargarh Block for instance, during the past
three months out of 93 fresh-case reportings, 44
were M.B. cases. Source of influence that lay
behind this inflow’ helps explain the phenome
non of the breakthrough! Out of these 93 freshcase-reportings, 40 came through Patient to
Patient communication (17 MB + 23 PB); 23 on
Patient’s own initiative (12 MB + 11 PB); 18
accompanied the social communicators from
their respective villages (10 MB + 8 PB); and only 12
(5 MB + 7 PB) through contacts of Health System
Workers. The Health System Workers in this case
included Community Health Volunteers (CHVs),
the Multi-Purpose Workers (MPWs) of the General
Health System, and the Healthy Contact Surveil
lance visits of Para-Medical Workers of the
Leprosy System.
It is worth noting that these reportings over a
three month period ending March, 1988, far
exceed the number of cases reported over one full
year in the past. Moreover, the steep’ increase in
the rate of reportings noticed in Dongargarh is not
observed in the remaining three Blocks of
Rajnandgaon Leprosy Control Unit.
We are, therefore, inclined to view the changing
pattern of influence behind fresh-case-reportings,
and its steep rate of increase as two sides of the
same coin—Group Method of work (as distinct
from the individual centred ‘clinical’ approa
ches) adopted in Dongargarh on a vigorous scale
over past one year. The simultaneity of earnest,
and authentic interactional involvement of the
three arms of Leprosy Control Triangle - the
Patient and his family, the Social Communicator,
Health Educator
Rajnandgaon LEU
97
and the Treatment Provider—in pron.uui,6
responsive action’ underlined the method.
The pnenomenon of responsive action’ manifes
ted through Social Communicators expecting the
Patients to present themselves clean’ before the
so ety; and the Patients expecting respectful
treatment in return, can be cited as one of the
many forms of such ‘action’. Similarly Patient- ‘
Social Communicator combination creating
demand on Treatment Providers for timely
deliveiy of composite service which is directed
towards ‘Patient Care’—far beyond the ‘pill
popping’ practices, and the Treatment Providers,
in turn asking the Social Communicators to
provide for feeding and other arrangement for the
Mixed-Group Residential Camps during the Mass
Service Sessions, is yet another form of this
action. Fairplay practised while promoting
responsive action’ during the interactional
process, generated a new climate wherein
mutuality of genuinely reasonable expectations
thrived.
As a result of these practices in the field over a
period, the Mixed-Group-Residential (MGR)
Camps turned out a most convenient instrument
for articulation of the mutual expectations and
practice of mutually compatible roles.
The latest in the senes of the MGR Camps was
organised in the month of Februaiy to demons
trate composite’ character of the Service’ in a
responsive action’ setting. This was synchroni
sed with Intensive Therapy’ under MDT for the
remaining two Sectors in the Dongai^garh Block
The Camp operated in two stages. First six days at
98
me DDP and its surrounding villages, and the
remaining eight days at a central point—Purena.
Here, the three arms’ of the Leprosy Control
Triangle stayed together round the clock
absorbed in learning pursuits, shared responsibi
lities, tuned their listening to heartbeats of each
other, endeavoured to develop understandings
about mutual ui'ges and aspirations, and
accommodated their roles in the major task of
removing misconceptions about leprosy, its
occurrence, transmission and “Cure”. It was a
heart-warming exercise in Community Education
through responsive action.’
Whatever happened during those eventful 14
days at the Camp needed to be seen to be
believed. What the well motivated, determined
team of Field Workers did during this camp, no
formal authority coujd have ever ordained us to
do. Not having known the depth or our
determination, even an ardent ideologue would
not have dared to hope his dream world come so
true. We entered the ‘Camp Arena’ with our hang
ups, prides and prejudices, fears and apprehen
sions-still sticking to us, though unknowingly.
But bound together by a certain deep rooted
determination to transcend our previous perfor
mance levels, attained during the Dongargarh
Intensive Therapy Camp under the guidance of
Resource Persons, we worked at our best. We
were anxious to show: we can do better unaided
by the ‘resource persons’.
With passing of those morale boosting 14 days in
close proximity, we lived to merge our separate
identities almost into one. It would be of interest
to see how such merger of identities through
accommodating distinct but complementary
roles, resulted in building a vibrant image pf
"credibility” for the Control System. We quote
below two events to underline this march
towards high rise credibility:
Taran Das*
That evening Taran Das (a patient at the Camp)
was sitting with a group of patients and was
talking a lot against the treatment he received
earlier in a non-govemmental Hospital which
offered specialised services in leprosy.
Taran Das complained that he was treated very
badly there, so much so that nobody even
touched his body during the medical examina
tion.
He was asked by the other patients as to why he
did not go to the right place (meaning the Leprosy
Control Unit) for treatment in the beginning. This
remark upset him.
Am I not attending the 'Unit’ now? Am I not taking
Drugs regularly?”, he asked. "I don’t see much of
improvement even here!” he explained.
Others in the group gave an analogy of a watch
that is not functioning properly. In such a case it
has to be taken to a good watchmaker for repairs
and one has to be regular in winding the key eveiy
24 hours. Also, it has to be reported to the
watchmaker if the watch shows a wrong time.
To illustrate this point someone from amongst
the group advanced a watch that had stopped
working.
’Both excerpts produced from Recorded Tapes
Fortunately enough because of the treatment at
the Camp, Taran Das noticed hopefill improve
ments subsequently. It was observed that the
clawing trends in his fingers started abating, they
were becoming straight. The fingers had started
getting perspiration which in itself was consi
dered a marked improvement. One day on his
own he remarked: "My hands are showing
improvement”.
Surja Bai
It was the first day of the MGR Camp for Intensive
Therapy. A woman in her early fifties with clear
signs of nodular leprosy, walked into the camp
site with a rolled-bed on her head and a rolled up
newspaper in her hand. Her name was Surja Bai.
She had come all the way from village Pondi in the
neighbouring district of Bilaspur. The Newspaper
in her hand had brought to her the news of this
Camp.
She was taking medicine from a local NMA (Non
Medical Assistant) for the past several years. She
was not regular in her treatment though. Partly
because of her disillusionment with the treat
ment; and partly because of the irregularity of
visits of the local NMA.
Surja Bai’s husband—retired as a driver from
Government Service. Surja Bai lived with their
Son, who too, was working as a driver in a
Government office.
None of the family members, however, accom
panied her to the Camp. Ttiough they had given
her ail encouragement to proceed to Purena—the
Camp headquarters.
99
Her admission to the Camp was a problematic
proposition. She did not belong to Rajnandgaon
District. The matter was referred to the local
Camp Organisation Committee Members. They
were expected to make arrangements for not only
her meals and stay, but also to ensure her regular
attendance in future, during the Pulse Stage’ drug
distribution.
Surja pleaded with the Committee Members to
send her the drugs for subsequent months by
Postal Delivery. Since this was not permissible, a
compromise formula was worked out.
Surja’s parental family belonged to a village in the
neighbouring Rlock of the same ECU. She assured
the Committee about her regularity in taking
medicine every month at her parental home.
The Committee Members allowed her to join the
Camp. She showed exemplary behaviour while at
the Camp; and endeared herself to other
Campers.
Surja Bai, as promised has been regular on the
three subsequent " Pulse Dates.”
We are inclined to attribute the new trends in
"fresh-case-reportings in Dongargarh to the
dynamics involved in the promotional efforts of
responsive action” and the consequent emer
gence of high-rise credibility. Even the field
workers’ intense involvement witnessed during
the Camp is a product of the mutually satisfying
self-acquired roles, performed on a sustained
basis by all the three arms of the triangle.
No wonder, therefore, on 20th February, when it
came to parting of company on the concluding
100
day of the camp—we felt as though we were
holding on to a new legacy of merged identities
which would hold us together under a nostalgic
spell for months to come.
This was succinctly brought home by the
Collector, Rajnandgaon, while addressing the
campers on the concluding day. The sum and
substance of what he was driving at the feet was
that we all had worked unlike conventional
government servants, by discarding the usual
aura of authority and by adopting new (Yaachak)
role; risking and working on our own steam, with
our own hands on the steering wheel. It was a
clear manifestation of what the Resource persons
had earlier visualised as a practice in delegation
upwards’—a new way of working rather alien to
governmental administrative systems.
On 29.2.1988, in the quiet of the evening hours at
the village Khalari, the entire group of workers
who had worked at Purena hardly 10 days ago,
once again met to recall the events and to take
stock of whatever happened during those heart
warming camp days. In our midst were a few
others who could not attend the Camp earlier.
The occasion turned out as a forum (or exchange
of notes. Workers of all hues from DLO to the Field
Worker, vied with each other in narrating the
events and in exchanging their experiences. A few
selected narrative accounts are reproduced
hereafter with a view to share with co-workers
elsewhere the flavour of the "product’’ of
"responsive action’ which we ourselves relished
so intensely during those eventful 14 days.
.
■
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/r
Drug Delivery With A Difference
Bhilaians rejoiced at the dawning of a new era of Freedom from Fear of Leprosy under MDT.
Thanks to high credibility of Drug Delivery System! Safe Storage... Supervised Drug distribution
... Strict adherence to Delivery Schedules... Well designed Blister Packs to ensure patientmonitored 'Regimen Compliance'... Facility for short-cycle-feedback on performance... Top'
to 'Bottom' permeation of concern for 'Patient-Care'.
Cwm 3T -ipt
*«
WiRr
fir-err
it-S-ri TOE '•T-H ST
ji •fiat.
ti'' '
jtHt it
a
J1 --
!
Stigma.... On Retreat
IM 5
Regularity of Medication and tracking the
influence which brings the patientto treatment in
Fresh-Case Reporting ... a twosome appraisal
tool I In Dongargarh Block out of 44 MB and 49 PB
fresh-case-reportings over past three months, 40
showed-up through patient to patient
communication; 18 through Social
Commupicator-channel; and 23 through
patient's own initiative.
.
• f*
b
k
30.1. Panchayat ghar without a light
B.L. Rose
I We faced problems while organising a camp at the DDP
(Drug Distribution Point) level. In fact Bilhari was a totally
| new place for us. Never before had we organised camping
activities here. One of the Field workers was to reach
Bilhari to-day, one day before the camp started. About 9
patients were to reach the Camp site in the night.
>
Later in the night the DLO and myself reached the
Panchayat Ghar where the camp was scheduled to be
held. We are anxious to know if the Field worker had faced
any problems. To our utter disappqintment none was to
be seen at the Panchayat Ghar; not even our Field worker.
We then proceeded to Mohan’s house. Mohan was our Jan
Bhagidar (Social Communicator) from Bilhari. Mohan, too,
was sleeping. We found our Field worker sleeping in
Mohan’s house. According to the Field worker, out of nine
patients only one had turned up. Since the Bulb was
missing and it was dark in the Panchayat Ghar, he had
made arrangements for the Patient in the house of another
villager.
We expressed our displeasure at the slackness in
preparations for the Camp; and enquired with Mohan if
we should shift the Camp site to a nearby village. We had
selected Bilhari because the patients from surrounding
villages favoured this place. Mohan felt bad. Because the
slackness was not intentional. He assured us that all
arrangements would be made the next day.
Health Educator
lihilai SADA LEU
lihilai
Next day when we reached Bilhari, we found all
arrangements in order. The light fittings were there. The
cultural group activities were well planned. We were
surprised at the briskness. It appeared Mohan was on his
feet early in the morning. He convened a group meeting
and explained the objectives of the Camp The people
showed interest in his ideas. With great enthusiasm they
came forward to render heln.
Whenever we organised a small camp like this in a village,
we anticipated support from villagers. The villagers
generally finalised arrangements in a group meeting. In
such meetings, on occasions, we bed seen the villagers
splitting into two groups, one in favour and the other
against.
While organising a camp a Cheepa we faced such
r*T'oblems. Soon we realised that it was mainly a local
problem.
Our Survey had indicated that 16 M B. and 35 P.B. cases
were to be brought together at Cheepa from 6th to 12th.
But for want of unanimity amongst the villagers the
preparatory arrangements for the Camp had remained in
the doldrums for some time.
With our intervention, an agreed proposition was worked
out. The arrangements for six days were divided into two
segments of three days for each group. Immediately
Sanwalra and Kotdar brought to us cash contributions of
Rs. 24/-. They collected rice and other necessities
adequate to feed the Campers for 3 days. Nothing was
found wanting in the arrangements. They had distributed
duties to different groups. Every evening the groups used
to meet together and sort out their problems.
We saw that such intense involvement of villagers in
hosting the Camp, brought them closer to patients. It was
a thrilling spectacle to watch villagers taking the patients
to their homes and treating them for Tea and Pan-Supari
(Betel leaves) on their own initiatives.
Even the way the cash collections of Rs. 24/- came in,
appeared quite interesting. Daya Ram had given 2 kg Rice
and Rs. 5/- in cash. Patel Ramsukh made a similar
contribution. Ramacharan gave 1.25 kg. Rice and Rs. 2.25 in
cash. There were even smaller contributions. But when
COMMUNITY HEALTH CELL
101
47/1,(i-Trst Floor)S.. Marks doad
BANGALORE • Suv uul
Amar Singh announced Re. 1/- in charity, there was big
hulla gulla in the meeting. The group objected to his using
the word "Charity”. They did not accept his Rupee. On the
contrary they extended an invitation to Daya Ram to visit
the larger Camp at Purena to understand the difference
between "Charity”, "Alms” and "Cooperation”.
My patients’ list increased gradually. In the beginning I
had fourteen cases. Then the number increased to sixteen
and now it is 26. It is worth mentioning here that I did not
motivate anyone. They joined the Camp on their own.
The additional 10 M.B. cases opted for this place as a
second thought. They joined here instead of moving to
places earlier suggested by them.
Lingering Influence
In Dev Katta, I met a very old friend of mine. He used to be
my classmate in the village school. After completing his
studies he became a teacher in Dev Katta school. Since
102
then we had rarely met. Somehow he heard that I am
working with the Leprosy Eradication Programme; but
did’nt have clear information about the nature ofmy work.
When a camp was organised in Devkatta under Mr.
Kalchuri’s guidance, he was a regular visitor there and
observed Mr. Kalchuri at work. He was highly impressed
by what he saw.
Subsequently, when I visited Devkatta on a pulse date, he
met me and was all praise for Mr. Kalchuri. He went a step
further and expressed his desire to work with us during
his summer vacations. From his previous experience of
working at the camp he knew that this kind of work
brought immense mental satisfaction.
There is another person like him in Bilhari. Mohan is now
completely involved in this kind ofwork. He is prepared to
work in any part of India and is willing to travel at his
expense to the camps. At the Bilhari camp, he became our
right hand man. The credit for the camp’s success goes to
him.
30.2 The Morose Patient*
B.S. Bhatnagar
4
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'One day I noticed a patient sitting quietly in a comer.
According to other patients he was a Khallori’ (a
Scheduled Caste). I strongly disapproved. ‘ We all are
equals and should mix freely without any reservations I
1 a^so noticed a few ulcers on him, which made him
look uncIean and unhygienic. This might be one of the
reasons for his sitting aloof. I cleaned his ulcers and
bandaged the wounds. This brought about an improve
ment in his looks and also in his attitude towards others.
Soon afterwards he was seen sitting amongst the patients
talking freely.”
“As a general practice the patients cleaned and bandaged
each other’s ulcers. But in this particular case I helped the
patient in order to remove his feelings of estrangement
and discomfort.. .As others came to know about this
incident, my behaviour was subsequently debated in a
small learning group during the camp.”
“Discussing such matters in small groups always helped
convey important messages effectively about cleanliness
and personal hygiene. By doing so we came closer to each
other and mixed freely. We made it a point not to apply
any force or give any instructions in matters of personal
cleanliness. They themselves understood its importance
through group discussions. They realised that those who
did not observe cleanliness raised barriers in free mixing.”
entirely on villagers’ own initiatives. They had cleaned and
whitewashed the exteriors of their houses as is normally
done on festive occasions like Diwali.”
“Today an interesting incident took place. A patient from a
nearby village came two days late. I noticed this but kept
quipt. However in my presence other patients questioned
him. They also told him that he missed two days of
learnings which dealt with MDT treatment and hydro
therapy.
The newcomer looked unclean and was wearing dirty
clothes. The other patients prevailed on him to take a cold
water bath. He was also told to go back home and bring
clean clothes. He went home and returned with clean
clothes.”
. /•
> yqrt..-
“Patients used to come to common meetings meant for
larger group sessions punctually at 8 AM as a routine. To
start with they would clean and decorate the place with
Rungoli. Then take medicine, followed by dressing of
wounds.”
Para-Medical Worker
Mohra Sector
Rajnandgaon LEU
“During the camp days, the high standard of cleanliness
was evident not only in the camp and the surrounding
areas, but in the entire Purena Village. This was happening
’Nine write-up that follow, based on free style rendering from the
recorded tape: Original in Hindi.
103
30.3 Bhawani s shirt
Ram Gopal Thawait
i "One boy—a patient named Bhawani was wearing a tom
kurta. He was asked by other patients as to why he was
I wearing such a kurta. Why did he ignore the early
I instructions of the Organisers? The boy got irritated at
| these comments. In a rage he completely tore off his kurta
I into pieces. I was watching this scene. It made me nervous
’ for a moment. I feared a flare up resulting in a fight. But
nothing of this sort happened.
j "Quietly the boy took out a new shirt from his bag; and
wore it to the utter surprise of all.”
"Someone from amongst the small group asked Bhawani:
"Instead of tearing off the shirt couldn’t you have given it
to a poor and needy person?”
"It was so bad that even a beggar would not have liked to
wear it”, replied Bhawani in a lighter vein.”
"For some time Bhawani remained quiet. Then all of a
sudden he got up and demanded: "Let me go and inspect
the cleanliness and tidiness of others.”
"While he was inspecting one of the patients—a Kotwal,
Bhawani told him that his shirt was dirty. The Kotwal in a
fit of anger retorted: "Your shirt was equally dirty. Since
you had brought a spare shirt, you changed it. I don’t have
a spare shirt.”
"Prompt came Bhawanis reaction: ‘ While taking bath you
could always wash it and diy in the Sun . Kotwal did not
relish this advice either.”
All the same next day we saw the Kotwal wearing a well
washed shirt.”
Para Medical Worker
Charbhata Sector
hajnandgaon LEU.
104
"Soap was in great demand in the Camp. Those who
managed to get it, used, it generously for washing and
bathing. Whereas others kept on asking for soap and hair
oil, but could not get it. The Kotwal came to me and asked
for soap. He wanted to wash his clothes. He could not
manage to get soap so far, as there was no soap available in
the stocks. I offered him my soap. Toiletries for the camp
were donated by the villagers. The stocks needed
replenishments.”
"The patients had already selected six persons from
amongst them as their leaders. Potdar and Preet Ram—
two of the six, today took a round of the camp to see
whether the variously agreed points regarding cleanliness
were observed properly or not. This included nail cutting,
mending of tom clothes, washing of bed sheets, keeping
shoes and chappals, at a safe distance from the beds.”
"None took offence at this inspection.”
Panchu
"A patient from Chheepa by the name of Panchu was very
poor. So much so that he used to ask for left over food in
the village for his family. Before coming to the camp he
borrowed Rs. 20/- from someone and bought rations
which would last 4-5 days for his family.”
"He used to do voluntary work at the camp, fetching water,
cleaning utensils and serving food, etc.'In the camp a
helper was required on daily wages to do the
miscellaneous errands. Panchu being a camper could not
have been paid cash for the work he was doing there. But
impressed by his sense of devotion some of the campers
suggested that his wife should be engaged on daily wages
to do these jobs.”
"Panchu took this suggestion in a different light It
appeared the suggestion had hurt Panchu’s ego. He
outright rejected the offer. Although his wife and children
often came to the camp to enquire about his welfere, he
di d not like the idea of his wife working in front of others
on payment."
30.4 Ramkali
Savitri Tiwari
On 7th February, Ramkali was brought to the Purena
Camp by her elder brother — Tularam, who was a known
Pandavni style singer. No one from her husband’s family
accompanied her. In fact her journey to the camp, in a
way, was facilitated by a three year old PB patient, PunkiTularam’s daughter.
When Punki accompanied her mother to the Dongargarh
Leprosy Clinic a few weeks back she had seen a patient
being examined who had symptom on her body which,
according to her, resembled the ones on the body of her
father’s sister—Ramkali. Back home Punki’s mother spoke
to Tularam. As a result Tularam brought Ramkali to
Purena Camp.
After examination the Doctor declared her to be a Leprosy
Case (MB).
As soon as she heard about the diagnosis, I noticed tears
rolling down Ramkali’s cheeks. In a choked voice she
muttered: “What will happen to me now? Why has God
been so unkind?” Her disease was in somewhat advanced
stage. This made her all the more depressed. She was
trying her best to bear the shock
As she was in the midst of the shock and was wondering
about how she was going to reveal this to her husband,
and others in the family at Balaghat, she overheard
someone amongst the people around say: “Look! She’s
Ramkali. She is a superb singer.” She looked up and
noticed a few persons gazing at her. Expression on her
face underwent change. She collected her bag and
proceeded to the place where others were staying.
needed recognition at the camp. The cordial atmosphere
in the camp; the warmth underlying the medical
treatment and the special attention she received, brought
forth a tremendous change in her attitude towards her
disease.
Next day she participated in the cultural programme
organised for the evening. She sang to the great delight of
other inmates and villagers. The programme was so
interesting and absorbing that none of us could leave it
halfway. It was based on the epic Ramayana. The group
presenting the programme was playing drums and a
variety of other locally available musical instruments.
Tularam, brother of Ramkali, was the main singer.
Ramkali's contribution was superb. All the villagers and
patients enjoyed the programme so much that nobody
thought of going to bed till it lasted. They remained there
from 9 PM to 2 AM next moming.
On the day of departure when prices were being
distributed for different best performances, at the hands
of the Collector, Ramkali received the Best Patient’ prize.
She was lustily cheered by one and all.
While taking leave she mumbled: " I wish I’d stayed here
longer!”
After 14 days at the camp, she was a totally changed
person. She talked to other patients, mixed freely, and
Para-Medical Worker
sang to the delight of other camp inmates. She was
Dhundhera Sector
Rajnandgaon LEU.
conscious of being a good singer. She got the much
105
Donated blankets
A pleasant afternoon of November. It was concluding day
of the Cpmmunity sponsored Intensive Therapy Camp at
Dongargarh. One Donor from Delhi had sent potton
Blankets for free distribution amongst poor Leprosy
Patients. The blankets were 45 whereas the number of
patients at the Camp was 92.
Respective Para-Medical Workers were requested to
prepare selective lists of relatively more needy patients
from their Sectors.
Workers thought it imprudent on their part to prepare
such lists. They considered it a risky device. Because it
involved displeasing 50 percent of the patients. According
to them, those not included in the list were sure to be
displeased.
Ultimately the task of preparing the list was entrusted to a
committee of 5 representatives of the Patients — with a
suggestion that they should evolve a criterion first for
judging a deserving patient; and on that basis prepare the
list
For more than 40 minutes the 5 Representatives struggled
hard to evolve a criterion which was acceptable to all the
five. Finding the task difficult they adjourned and put the
decision-making responsibility back in the lap of the
organisers.
The organisers pondered over the problem and in the end
decided to refer the matter to the good sense of the
general patient community. All patients were called in a
meeting. After presenting the problem before the
gathering, the organisers requested them to think about
those others whose need for the blanket was more
reasonable than theirs. It was suggested that those
patients who were willing to surrender their own claims
106
in favour of needier patients, should stand up and
withdraw their names.
What followed in its wake was a heart-warming spectacle.
One after the other they got up to withdraw their names.
Amongst them were those who presented a picture of
poverty. And yet without hesitation they declared—"My
need for the blanket is not as pressing. I withdraw my
name”.
When it came towomen patients, the scene turned much
more touching. Tears rolled down many eyes when two
old Women in their tattered sarees, stood up one after the
other and announced: "I forego my claim”.
As a result of the large-scale withdrawals, 23 Blankets
remained surplus with the oi’ganisers. Posing yet another
problem!
30.5 The sarpanch and his "Kodhis’ !
Bhimrao Khatarkar
|
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"Today a strange incident took place. Seepar Ram—the
Sarpanch from village Purena, visited the first phase
Deokatta Camp along with one of his friends. As he was
moving about in the camp, talking to his friend, some
patients overheard him refer to leprosy patients as
"Kodhis”—in the derogatory term with which the leprosy
patients were generally referred in this Region. Seepar
Ram was explaining to his friend how exacting it was to
make arrangements for the big camp of "Kodhis” being
organised at Purena from 12th February onwards.”
"Patients at Deokaita were very much agitated at this
demeaning reference by Seepar Ram. They held a meeting
in the evening and requested LEU staff to cancel the plan
of holding the Central Camp at Purena wherein Seepar
Ram was to the Organiser Role. They were prepared to
strive hard and rriake alternate arrangements at village
Khilari, instead. The camp atmosphere got surcharged
with emotions.”
"The situation was saved by tactful, timely intervention by
some elders from Deokatta. They defined the term
"Kodhi” as one who shirked his responsibility towards the
society by refusing or neglecting regular medical
treatment. "How could it apply to you? You are leaving no
stone unturned to get yourself cured. If anyone called you
"Kodhi” he must have run out of his senses. He must be a
mad person”, they consoled.”
love for them. But largely because of his mother’s
insistence.’’
"We had observed him bring his own liimbler for drinking
water whenever he came to eat. For similar reasons he had
disapproved of the practice of serving meals on Paatas’
with plastic sheet coverings. For first two-three days he
rarely mixed with the patients. It was only after the grand
gala cultural night wherein patientshoth men and women,
outdid performances given by non-patient villagers, that he
started moving about amongst patients.”
"In fact after the cultural programme evening, the patients
had gone high up in the estimation of other villagers.
Villagers took patients to their homes either for ehting
"Paan” or for "Tobacco-chewing”. Some even invited them
home for tea.”
"On the concluding day however, when the District
Collector joined the patients for the common lunch,
Seepar Ram did not bring his separate llimbler; and drank
water from the one commonly used for drinking purposes
by the campers.’’
"The tactful intervention of the elders—the local MLA and
his son saved the situation. Tempers were cooled. The
elders arranged a song party afterwards. It all ended on a
pleasing note.”
Para-Medical-Worker
Dhundhera Sector
Rajnandgaon LEU.
"Even otherwise, Seepar Ram always took a condescend
ing view of the leprosy patients. He was involved in making
arrangements for the camp not so much because of his
107
Censored message
"Stormy scenes were witnessed today on three different
occasions, but almost on a common theme. Surprisingly
our co-workers got involved in the subsequent heated
exchanges. To start with one issue was under debate in an
informal group discussion of patients, social communi
cators and a few villagers. The latter group included the
Sarpanch of the village who after participating in the DDP
level camp previous week, had taken a firm stand against
his village people and had allowed bathing of patients in
the common village pond against the villagers’ wish."
"He was agitated today because one of the visiting
doctors, had advised the group about not allowing
persons with ulcers to bathe in common village ponds. A
hue and cry was raised by the Sarpanch about his earlier
deception by the workers.”
"The house, however, appeared divided on this issue. One
gxoup maintained: when cattle could wallow in the pond,
when all types of dirty things cpuld be washed with
impunity, what difference did it make if a person with an
ulcer took bath? This group made themselves bold and
even questioned the wisdom of the doctor. Arguments
and counter arguments followed.”
"In the end though the Sarpanch stood convinced about
his earlier action, some of our co-workers got agitated at the
contradictions inherent in our approach which this
incident had brought to the surface. They were disturbed
over the contradictions. More particularly with regard to
'transmission’ of the disease and infectivity. They
pointed to a paragraph in one of the Health Education
pamphlets to illlustrate their point. The particular portion
talked about an infectious type ofpatient who through his
breathing, sneezing, and coughing transmitted millions
and millions of bacteria. They asked, didn’t this mean
talking with two mouths? If what was written in the
108
pamphlet was correct, then why did they waste their
energies on persuading villagers to mix with the patients
without any hesitation? Why did they encourage their
colleagues to sleep with their beds in close proximity to
those of the patients? Were they not cheating the village
people and the patients? And also the Workers?”
"At this stage some of the patients, too, joined in the
discussions. They asked if they were infectious, why did
the Organisers call them to this camp? A strong chorus of
protests came from this section. They were disturbed
emotionally. Tempers ran high. Practically everyone was
on his feet. They even objected to a reference in the
Certificate given to cured’ patients by Leprosy Hospitals.
There it was stated: "now he (the patient) can take
medicine at home.” They wanted this reference to be
deleted because it put others into a category who needed
compulsory social segregation.”
'Waving the particular pamphlet in the air one of our
colleagues appealed to all others to tear off the
objectionable portion from the pamphlet then and there.
What he himself tore off was the entire pamphlet. Others
followed suit. A verdict was given. Something within us
was up in arms. It was far more powerful than logic.”
"The action taken in a fit of emotional upset was to the
liking of one and all. All got up to go even though the
formality of group discussion as part of the training
session was not over.”
w
31. From Dongargarh to Bhilai
Pandit Patankar
|
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Consultant
Community Action
DANLEP
Mew Delhi
When it comes to dealing creatively with a knotty problem
like leprosy, what helps most is not generation of new
ideas, but escaping from dysfunctional hangovers of old
ones. The journey from Dongargarh which started in
March 1987, essentially has a character of an escapade in
this sense, casting away the dysfunctionality of old ideas.
A classic example of how’ a dysfunctional hangover
persists and stalls progressive movement towards
meaningful action can be cited here.
place just with first few closes of MDT amongst the balance
2 per cent who get infected. If both the pronouncements
about natural immunity and the instancy of bacterial kill
are sound and true, how is it that a patient who has been
regular in taking daily doses of MDT successively for 14
days, and has maintained a commendable record of
treatment compliance subsequently, still remains suspect
as an infectivity-risk ? Deductive logic gives the answer:
He certainly cannot”. And yet uncertainties hang on.
When does a person with M.B. history, ceases to be an
How do we explain these uncertainties to the person who
infectivity risk to others? It is a simple question which
remains under constant threat of social ostracisation?
interests both the general public as well as the patient.
None has explained so far, which of these patients are
Since long it has been crying for an answer. Is it when he
really an infectivity risk, the person under treatment with
negative smear or the one with positive smear; or both?
has a negative smear? How does a person in the street or
let us say in the neighbourhood of the patient, knoww'hen.
And how? Yet the infectivity-risk' mania persists. Not
amongst the laymen but amongst the para-medics and
the patient goes negative on his smear? What does that
person in the neighbour
even the professionals.
hood do when he is not
Thereby
crippling their
‘Mixed-Group-Residential’. . . camp in its
aware of the smear results?
potent capacities to deliver
design and organisation simulated "In-Group”
Then what about the 50 per
effective services to leprosy
social setting of the envisioned tomorrow. A
cent plus M B. cases, who
patients. This is what we
setting where the patients lived a free soul
are on regular treatment of
mean w hen we talk of need
MDT despite negative
satisfying social existence in company with
for escape from dyski no
smear? Should a man in the
important members of the village communities. tional hangovers of old
street discriminate bet
ideas.
ween these two? And how? Should he shun social
I call it a hangover’ because we persist under its spell with
contacts with this person with leprosy history? Further
no convincing evidence at our command. In the day-tohair-splitting would lead us to increased uncertainties in
day life none of these patients who are regular on
our responses.
treatment have ever posed infectivity threat’ to others. At
The paradox of these uncertainties becomes sharper
when we pronounce from house tops the phenomenon of
natural immunity against this disease amongst 98 per cent
of the humans. The uncertainties becomes more
perplexing when we say 99.9 p<»r cent bacterial kill’ takes
least we do not possess scientific data to say that it does.
And yet we are lethargic in putting to use such a potently
powerful tool. I am told that now in the post-'Aarohan
Month phase in Bhilai voluntary reporting of new cases
has increased more than hundred per cent.
109
Since March 87 in Dongargarh, we decided to escape the
rigours of these uncertainties by considering all those
who have completed Intensive Therapy' under MDT, and
have maintained a reasonably regular record of medical
treatment subsequently, as persons with no infectivity
risk’ to the community. Indeed, on this basis, we built the
entire structure of the (now famous) long duration ‘MixedGroup-Residentia1 (MGR) Camps like the one conducted
in February this year at Purena. These camps brought
together the patients (M.B. Cases), the prominent villagers
(whom we called in Dongargarh as Social Communicators)
and the full range of control unit staff — right from the
DLO down to the Para-Medical Worker. These are the
Three Arms of the patient-care-triangle’. The Camp in its
design and organisation simulated “In-Group” social
setting of the envisioned tomorrow. A setting where the
patients lived a free, vibrant and soul satisfying social
existence in company with important members of the
village communities. These latter in turn, underwent a
new experience of scare-free’ social proximity with those
whom they had feared and rejected earlier. What better
learning experience we could think of for the workers as
help in ciystalising the goals of the overall leprosy
eradication progamme?
The personal as well as professional growth of the Field
Staff, in the process of organisation of such camp, was in
evidence in a subsequent get-together, where a critical
review of the Purena Camp was undertaken. We had
earlier in November 87 presented the ‘MGR Camp Model’
to a select group of the LEU staff in a Laboratory-cumWorkshop at Dongargarh. By way of a Feedback on how
they performed at Purena while working on this model,
they reported: "What you wanted to do earlier at
Dongargarh, but could not do, we have done here in
Purena”. I must confess: Purena camp was the most
110
«
satisfying experience in this journey we had undertaken
since March, 1987.
Yet another escape from the hangover of old ideas, or to
put it by using a behavioural science cliche’, the required
unlearning, was attempted during the year long journey.
This related to materialising patient-care’ in leprosy—to
mutual satisfaction of the patient as well as the delivery
system. In leprosy, patient care is not only hot episodic, it
essentially remains dependent on or is governed by the
presence of positivity in the social environment. It is these
factors of positivity that set scale to the degree of positivity
of the patient response. The community forms one of the
major factors in either hindering or facilitating free-flbw of
‘medicare’ or for that matter any form of other care to
leprosy patient in this sense. The conventional bilateral,
medicare’ based clinical model of patient care, therefore,
has remained inadequate. The most heart-warming
patient behaviours witnessed during the camps like
Purena, provided convincing proof of the need to look
upon the Community as a critical medium for effective
translation of medicare' into broader aspects of patient
care’. It was seen that medicare and patient care were two
different concepts in leprosy. The patient care delivery
required a triangular setting. The patient, the value infuser
in the community and the treatment provider, formed the
triangle for patient care.
The real snag in operationalising this Triangular Model'
was not the absence of community response. The snag lay
in the style or pattern of response seeking practiced in a
governmental system. It carries an hierarchical flavour. In
the MGR camps the community played a major
partnering role. This was well demonstrated when
decision for admission of Surja Bai (a patient who
belonged to another district was seeking admission for
.MDT in Purena) was referred to the local committee of the
villagers. The issue whether the governmental system
would accommodate and assign such a role to local
community and be able to adjust with it, does arise in a
long-term perspective. Such adjustment is likely to be
perceived as a threat. What happened if the patients and
the community mdulged in unreasonable expectations’
from the Field staff? Doubts of this nature haunt the Field
workers who obviously worked under resource cons
traints and pre-patterned delivery of services?
Events in Dongargarh, however, proved that such
apprehensions were nothing more than the hangover of
the old idea’. We did escape from its spell. Responsive
Action’ involving mutuality of expectations came our way
quite handy as a safeguard. Only the old idea wherein the
delivery system was conceived as a transaction between
givers’ and takers’ in their fixed roles needed to be
discarded. The giver’ and taker’ roles were required to be
made interchangeable. They need not be statically seen as
agency’ specific. We could see, how the day the Field Staff
played the Taker’ role in Dongargarh (the Seeker’ or
Yaachak' role) a totally new field dynamics developed.
That day the community Arm’ of the triangle acquired
pro-active dimensions, it started shaping itself into a
medium of patient care’ in leprosy in Dongargarh area.
The Seth’ in the Sabdi Bai’s case and the role he played
that morning on the Pulse’ day was symbolic in this
sense. Judging from the quality and character of field
responses in certain areas in Dongargarh the Seth’s
behaviour’, in no way, could be termed as exceptional’.
The role-exchange transaction, the switchovers to
‘Seeker’’ role; and the manager role did not remain
restricted only to the treatment providers’ and the
community’. The patients too, were drawn in the process
of role-exchange-transaction’ equally significantly. To
begin with as part of the responsive action’ they were
expected to remain clean if they anticipated acceptance’
and respect' from their social setting. Indeed, cleanliness
formed priority number one activity of a 5-point
programme that was devised to highlight the scope to
promote transactions in roles or in exchange of the role
functions. The programme covered — (i) Cleanliness
(Swachhata); (ii) Respect or Social Acceptance (Samman);
(iii) Relay of Affection or Warmth (Lagaav); (iv) Composite
Service (Samagra Sewa); and (v) Endeavour (Nirdhar or
Prayaas). The three arms of the patient care triangle were
to implement this 5-point programme while developing
work in villages. In the wake of this programme, during the
year, a vide variety of actions and interactions flowed in
giving rise to sharpness of mutually transacted expecta
tions and shaping of consequent roles’.
All said and done, escape from the hangover of the old
idea about patient-role’ remained a slow-scaling down
process. The old idea visualised primarily Taker’ roles for
the patients. Even imagination did not stretch to a point
where escape from this old idea could be considered
feasible. How could a patient play a giver' role?
Developing a 'delivery system’ to promote and develop
new, socially meaningful giver' roles for the patients
sounded ludicrous. It sounds ludicrous because scant
attention has been paid to the identity needs of the
patients. Medicare, under the old idea was seen as the
beginning and the end of the function of the delivery
system. Escape from the hangover of such understanding
of the function of the delivery system, appeared a hard nut
to crack.
Medicinally centred service formed the focal point of the
delivery system. The functions of Survey, Detection, Case
holding, Surveillance, etc. which were visualised for the
system, inadvertantly created an impression amongst the
patients’ mind that the system was installed to advance
111
the community interest of protection from infection,
rather than to cater to patient needs.
First attempt of escape from the restricted view of the
function of delivery system was made during the
Community Resource Mobilisation Workshop of March,
1987. It marked the beginning of search for an escape
route. Fieldworkers were asked to go to villages not for
case detection work. A proposition was made that they
should not-spy on the community in this fashion; and in
the process expect the community leaders to play
informer’ roles. The suggestion sounded ludicrous. But
credence was given for search of an alternative function.
The focus of vigilance shifted from detection’ and
surveillance’ to service’. Skin Disease Diagnosis &,
Treatment Camps came handy in the pursuit of the search
for alternatives.
Patients were seen as potentially better educators.
Articulation of their experiences turned out as better
channels of education on matters pertaining to the
disease. This was just the beginning of an understanding
of the capability potential amongst the patients.
Eventually, a new awareness developed that they are
valuable to the delivery system as active partners.
Simultaneous with this awareness, discarding of the Case
detector role by the Fieldworkers had created a void in
Role functions of the Fieldstaff. As a result of this void’ a
gradual process of transfer of Role functions commenced.
Field worker was giving up something that was hurting to
the patjent and patient was taking over something which
was soothing to his ego. A role transaction was taking
place.
112
In Dongargarh, during the November ’87 Intensive
Therapy MGR Camp, thanks to special emphasis given by
Dr. Gude on Hydro-Oleo Therapy based Self-Care’ service,
the system developed new insights into preventive
aspects of work in leprosy which proved critical factors in
changing perspectives on system-function’. The system
could see an equally vital function beyond bacterial
control. Anaesthesia did not die with bacteria. Tremen
dous interest got developed not only amongst the field
staff, but within the patient community. The way the latter
evinced keen interest in Nose &. Mouth Toilet” and in
Ulcer Treatment’ exercises as part of this new therapv,
marked a major successful escape from the old idea of
medicare’ centred delivery system. Perhaps for the first
time the patient experienced something concrete and
worthwhile being attempted to arrest his downhill drift to
disintegration. Medicare' was generally perceived by the
patients as a system primarily devised and developed to
protect the community from infection of the disease. The
new therapy, therefore, for the first time gave him a new
hope. This was critical for the process of role-taking hv
the patients which had commenced earlier in the patienttumed-educator’ programme.
For the first time new crystalisations started materialising
about the functions and objectives of the delivery system.
The system at the operational level could visualise new
possibilities-of freeing the disease’ of its dread; and lifting
the patient to his unsullied, rightful place in the society. As
Shri Pradeep Singh says in his introductory remarks, Sabdi
Bai represented the patient of tomorrow — assertive
enough and striving to satisfy his/her own identity needs
while simultaneously at peace with the community
around, being assured of positivity of its response
symbolised by the Seth .
Leprosy plays havoc with patient s mind. The patient,
therefore, can be aptly described as a soul-lost person.
Reviving his faith in himself and putting him on his feet so
that he becomes aware of his capabilities and
potentialities, is all that should be expected of the new
enlarged delivery system. Shaping a giver-role’ around the
patient was all that important. Why underestimate his
potential to give ’back’ to the society; to the likes’ of him
who needed help? He can extend his hahd to put up a
workshop for the handicapped. What makes us doubt
these possibilities? The doubting Thomases within us
remain active because we have focussed our attention on
only destitutes amongst the patients.
In Bhilai bold experimentations were undertaken to
identify and shape giver’ roles for the patient’. To
recognise them wherever these were already being
performed. An effort was made to present to the public
that jpatient whose competency to play the giver’ role
remained
at on
least
par with others in the normal (non--- —
patient) society.
Special attention was focussed on two types of patient
groups in Bhilai. One category represented the “strong”
and the “sturdy” who represented the majority. Some of
them were already playing the giver’ roles but were on the
sly. Then there were those who were eager to play such
roles but were physically handicapped. The programme
in Bhilai covered both these categories. Escape was
sought from the old idea of focussing attention on that
segment of patient population which capitalised and
thrived on its destitute image.
The former group indeed played a stellar role in
improving the overall image of the leprosy patient in the
eyes of the general public. It was observed that this group
had a potential to function as a lever’ to lift those docile
and subdued ones at the one end of the axis, and the shy
and slippeiy ones at the other end.
beyond medicare’. In the process the weaknesses of the
existing system in attending to patient problems created
by anaesthesia and nerve paralysis came to the surface.
The problems appeared essentially organisational in
nature which could be overcome with application of
administrative mind.
We tried to relocate services for Reconstructive Surgeiy in
leprosy at a General Hospital. The perspectives which
prompted this experimentation were informed not so
much by the concern for multiplication or diffusion of
these services. It was governed by an awareness that
unless these were developed with adequate social or
community supports, they would never satisfy their prime
justification — promotion of expeditious “In-Group
Absorption” of persons with leprosy history.
It is gratifying to note that social supports so hitched on to
these services open up a new vista of social action which
effectively grapples with wider issues of social stigma that
are haunting the sphere of Rehabilitation work. One of the
broad-based programmes widely canvassed in Bhilai,
therefore related to promotion of “mixed-group-work
opportunities” in the existing work set-ups. Bhilai Mahila
Samaj was bold enough to invite 10 cured Leprosy
patients (women) at work at their Gloves Manufacturing
Workshop’.
Prospects of promoting organised but not independently
institutionalised social action to uproot stigma have
emerged brighter after Bhilai programme. In this sense
Bhilai does not mark the terminal point of the journey
which began at Dongargarh. Indeed it marks the
launching of it anew in a new vehicle which will by fuelled
and propelled by community action.
Experimentation in Bhilai remained centred on search for
a delivery system which primarily met patient needs
113
L
Dr. M.L. Jain
Abhay Newalkar
Urmila Deshmukh
Ravi Arya,
ARCHITECTS AND
PILLARS OF
ACCOMPLISHMENTS
PRAYAS AAROHAN
SAMAROH
Mahesh Chaturvedi
Ravi Arya, M.LA
Patron,
Samagra Prayas Aarohan Samiti
Bhilai
Bridge between Samaroh Organisers and
Trade Union Functionaries
Bhilai Steel Plant
Jyoti Bhattacharyya
Senior Staff Nurse, Bhilai Hospital
Heart Warming Nursing Care of
Corrective Surgery Patients in the Wards.
Dr. G.L. Gupta
Urmila Deshmukh
President
Grameen Mahila Mandal
village Risali-Bhilai
~~
willing worker amongst village women
h
Himanshu Mishra
Sardeshpande
Physio-Therapist
In-charge of the Physio Therapy Unit,
Bhilai Hospital. Valuable services
rendered in post operative physio
therapy to corrective surgery patients.
A. Chacko
Senior Staff Nurse Bhilai Hospital
Meticulous care of corrective surgeiy
patients
Dr. G.L. Gupta
Specialist
In-charge Orthopaedics, Bhilai Hospital.
Untiring surgeiy hand for corrective
surgeiy patients. Deep commitment to
work in the field of Leprosy.
Dr. Rakesh Chhabra,
House Surgeon,
Diligent pre and post operative care
in Hospital Wards
Bhilai Hospitals
Gulab
Dresser, Bhilai Hospital
Patients carried memories of his Service
with Smile’.
Mahesh Chaturvedi
Artist, P R O. BSP Bhilai
Ever willing competent helping hand for
organising exhibitions & drawing
painting competition. Member of the
Panel of Judges children’s art
competitions.
Dr. M.L. Jain
Specialist In-charge
Bums Unit, Bhilai Hospital
Plastic Surgeon
Known to patients for warmth and
competency. Doctor with few words
with enduring smile
B.R. Jain
Patron,
Samagra Prayas Aarohan Samiti
Industrialist, B.Co. Bhilai.
Philanthropist, kind hearted adopter of
corrective surgeiy patients
Dr. D. Jha
House Surgeon, Bhilai Hospital
Valuable help rendered during pre and
post operative stage for corrective
surgeiy patients. Active organisational
role in other activities of the Aarohan
Samaroh.
A. Joseph
Senior Staff Nurse, Bhilai Hospital
Warmth of nursing care in wards
remembered by corrective surgery
patients.
K. Kamalamma
Senior Staff Nurse, Bhilai Hospital ‘
Prompt attention to corrective surgeiy
patients in wards.
Shriram
i £
■
M.M. Wadhwa
I
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1
Tina Patankar
H.R.V. Rao Kandi
P. Kumar
Asst. Nursing Superintendent Bhilai
Hospital. Compassionate supervision
winning hearts of patients in wards.
Kuldeep Kumar
B.K. Industries, Bhilai
Member of a known philanthropic
family adopter/donor for corrective
surgeiy cases.
Himanshu Mishra
In-charge, Video Unit PRO Bhilai
Rendered invaluable service by covering
out-door video shooting of Aarohan
programme; and by briskly supplying
visually edited ready to view tapes.
Abhay Newalkar
Social Worker
Voluntarily offered services for the entire
duration of the self-care camp held at
Gayatri Shakti Peeth. Endeared all for his
infective smile.
Tina Patankar
Specialist DANLEP Video Unit New Delhi.
Young smart lady with smile. Spent long
hours behind the video camera in
N. Vishwanathan
Mrs. Gayatn Soni
Anil Vashisht
Operation Theatre day after day, to
record corrective surgeiy operations by
the visiting as well as the Bhilai Hospital
surgeons.
Shivdas Ramteke
Dresser, Bhilai Hospital
Endeared all patients by ungrudging
services.
Papa Rao
Artist,
Medical and Health Services BSP
Valuable help in putting up exhibitions
H.R.V. Rao Kandi
H.S. Mechinist
Machine Shop BSP
Volunteer Specially released by the
management to organise Aarohan
programme. Rendered behind the scene
valuable services.
Laxman Swamy
Theatre Assistant
Bhilai Hospital,
Meticulous nursing care of the patients
in the ward.
Mool Chand Shah
Patron
Industrialist, Simplex Industries, Bhilai,
Chief Guest, Samaapan Samaroh on 29th
April, 1988.
Mrs. Gayatri Soni
Social Worker
Volunteered her services for the duration
of the camp. Valuable silent
organisational work for "A Rupee For
New Life” programme.
Shriram
Secretary, DANLEP.
Diligent handling of Manuscriupt
Development for the Publication—‘ An
experiment in Community Action”
Personal attention poured into otherwise
tedious and strenuous work of preparing
repeat drafts.
Dr. M.C. Taya]
Senior Specialist
In-charge Anaesthesia,
Head of Department, Bhilai Hospital
Painstaking services, highly appreciated
by visiting surgeons
Pramod Yadav
Anil Vashisht
Cameraman Video Unit PRO, BSP, Bhilai
Ungrudging services for outdoor video
shooting of Aarohan programme.
N. Vishwanathan
Section Officer Finance, Specially
released as volunteer by B.S.P.
Pillar of strength. Diligently handled
accounts keeping for numerous
volunteers working for “A.Rupee for New
Life” programme. Firm handing of a
delicate mission.
M.M. Wadhwa
Physio-Therapist
In-charge P.T. Unit, Bhilai Hospital,
Accommodated with understanding
extra-rush of cases from corrective
surgey camp.
Pramod Yadav
Photographer, PRO Office, BSP,
Still photography for .the Aarohan
programme handled with great
understanding.
Incongruities Consigned to
Flames
• Alms giving to Beggars: heaping
indignities!
• Social isolation of children of
Leprosy patients: trampling the
scientific spirit.
• Hesitations to work with "cured"
but physically disabled: self
preservation at others' cost.
• Objections to sharing GeneralWard-Beds with infectivity-free
leprosy afflicted persons: hurting
insensitivity.
• Disinclination to eat & drink with
infectivity-free persons: shaming
civility.
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Position: 1801 (3 views)