REBUILDING THE LIVES OF THE

SOCIALLY MARGINALIZED
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By RUTH PFAU, M. D.
2002 Ramon Magsaysay Awardee
for Public Service
Presented at the 44th Ramon Magsaysay Awards Lecture Series
28 August, 2002, Manila, Philippines
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I have been asked to put some of my thoughts on paper, and I am happy to

reflect about the theme, Rebuilding Lives of the Socially Marginalized - but I
am not quite sure that I shall say what is written on these pages. Because if we
really want to enter into dialogue, into exchange of our thoughts and
experience, also these coming 20-30 minutes will, I hope, be a fruit of our
interaction.
Nevertheless, there are a few basic thoughts which probably will play a role simply because they are so interiorized by now, that I am hardly able to express
myself without these thoughts somehow "shining through".
There has been a time in my life when I, too, thought that analysis, and
subsequent planning were the most important steps when you wanted to bring
a programme to success. Not that I am upholding now that they are not
necessary, we are really happy that you are taking the time out today to reflect
with us on the problem, and the possibilities of Rebuilding the Lives of the
Marginalized, a topic which globally is at last gaining some attention, though
interest is still restricted largely to groups with social awareness. We are glad
to share today our experience of the past 30, 40 years, and we shall try to do
this in two parts: Part I we shall present the results of our struggle, and Part II

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the deeper dimension of this very struggle, the motives, and the lessons
learned.
This all we shall draw from our leprosy work in Pakistan, because it is in this
field where we gained our experience.
It all started off with an overriding fit of passionate anger. This sudden
confrontation with the fact that patients, patients, human beings who also had
only one, one life to live like me and you - that these patients were degraded,
denied the dignity which was their right, right bestowed upon them by the One
who created them and usand that they had consented to this state of
degradation - this was more than I could take. On this day, we swore that we
would do something to change the situation, something right here and now,
regardless what, but that we would do something.
From this first impulse inside the hut made from packing cases which served
my sisters as dispensary, the National Leprosy Control Programme developed,
which met its success, Leprosy control in Pakistan, in 1996.
Well, the "success" did not just fall from heaven - but it surely also did not
develop by our efforts alone. We, who have lived through the process, with all
its ups and downs, know how much of it was providence, grace. But also: how
much we owe to the determination and perseverance of the team.
Leprosy is a disease caused by a bacterium closely related to the Tuberculosis
bacillus. Mycobacterium Leprae mainly attacks the superficial nerves and
causes loss of sensation. The absence of the warning sense of pain leads to
injuries which are not attended to, and progresses into secondary infections.
The ensuing mutilations, and not the disease itself, are the reason for the
irrational fear of the disease, and the ostracism. Early diagnosis and effective
treatment will prevent these tragedies. However, the physical cure alone is not
all that is required. Leprosy patients need much more than anti-leprosy drugs
which kill the bacterium, but do not restore the person to health and happiness.
Patients need above all acceptance - somebody who will listen - they need
assistance in dealing with their handicap, with the reaction of the community,
with their own nagging fears and desperation. What did we achieve? Leprosy
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control was our first goal. Among the 49,500 patients identifed by December
2001, only 1,350 or 3% are still suffering from active leprosy requiring
chemotherapy. 27,237 or 55% are still in some need of comprehensive service
or the other. Of the 7,477 disabled patients, 72% (5,380) are now able to
effectively cope with their handicap, with the support of their family; and of
1,547 patients and their families in need of social assistance, 324 or 21% have
been successfully rehabilitated.
These results have been achieved during three decades of cooperation between
the NGO and provincial governments, by a team of 815, among them 275
leprosy technicians, the backbone of the programme, working in 170 field
units, spread all over the country; 84% of them government-units, the
remaining established by NGOs. The Marie Adelaide Leprosy Center (MALC)
is contributing more or less 50% of the annual operational budget and, more
important: the spirit to the programme.
HOW was it achieved? Of course, there was a lot of strategic planning,
analysis, budgeting, information systems and interpretation of results. But
there was also something which does not show in the dry figures above.
Something even more important.
A team braving the dangers of flashfloods and avalanches, of Kalashnikoffs in
the riot-ridden sprawling settlements of Greater Karachi and amidst sectarian
violence, of hazardous journeys through the Indus gorge and its side valleys,
in the oppressive heat of the desert tracks of Baluchistan, - without the
willingness to take the risks, without this personal concern for each and every
individual patient, this readiness to make sacrifices, Leprosy would never have
been controlled.
Where did the group get their motivation? If I knew, I surely would have
distilled an easy-to-follow recipe for similar programmes from it. Surely: the
concern for the individual... the happiness to see the smile in the face of their
patients... the challenge to control leprosy - to meet the target of a demanding,
but achievable goal; role-models, leaders who went along and shared the
hardships the workers were asked to take upon themselves; who appreciated
the efforts invested. All true. In spite of this, that it happened came finally as a
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surprise to all of us. Most of all to me - me who knew the programme so well,
who is so acutely aware of its shortcomings, of the fact that we are just ordinary
people, nothing special, government employees most, with all worries of
ordinary people, insufficient pay, sickness at home, difficulties to get a place
at school for the children, to ensure their professional training after matric,
headaches about water and electricity supply and the unfulfilled dream of
having ones own homeall these and nevertheless more: the unsung and
unquestioned daily courage and response to the challenge, this love for the
poorest of our fellow men.
There is much more to report. Since we have controlled leprosy, we have been
tackling related health tasks as well. We have already discharged as cured over
30,000 tuberculosis patients treated alongside the leprosy programme.
We have operated thousands of cataract patients and have been able to restore
their eye sight, we have repatriated 13,000 Afghan refugees and have been the
voice of these people without name and influence, have been their advocates
who brought their plight to the notice of UNHCR, have lent our protection to
run-away Hindu haris (bonded labourers) and their families, have sheltered
human right cases, especially women, have provided education for the
marginalized, sheltered workshops, microcreditsand be willing still to listen
when nobody else would or could give their attention.
Empowerment of the poor has happened more as a side effect, by osmosis.
Help in a situation of desperation, when they could not help themselves. And
once this was experienced: that they are precious, that they have a dignity
nobody has the right to take from them, then the first, most important step to
empowerment had already been taken.
There were simply too many that we could not have done it alone; we never
had institutions, we worked across the country, in the midst of the people, so
the people had to help us to affect change.

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And this brings us to PART II:

When we reflect on the past years, what has kept us going? What is the "C.I.",
the corporate identity of the group?
In the course of the struggle we got known to be a group who in order to help
people whom nobody else wants to help, we willingly and successfully tackle
necessary tasks others will not engage in.
We call our programme "Empowerment of the Underprivileged".
Empowerment.
May be this is the reason why lives were "rebuilt". There has been a time in
my life when I also thought that being successful meant being systematic,
analytical, cool, managerial - and I did blame myself that the programme was
so chaotic, so person centred, so "emotion charged". Today I am thinking
different.
Of course, we would not neglect professional competency, strategic planning,
evaluation and monitoring, we would agree on time bound measurable and
achievable targets, we would learn and speak the "modern language" (with a
bit of a grin at times), we would babble about globalization and social
marketing and paradigm shift and troubleshooting, we even believe that all this
we have to know and take into account, that the Internet has to change our
lives, toobut I think that we all know now that the level where something is
happening which leads to change, sustainable change, that this level is still
deeper - that it is somewhere in the realm where from the very beginning of
times, mothers have kept awake all night at the bed of their sick child - - it is
the level of empathy, where empowerment occurs.
This beautiful and magic word and attitude: "You are precious in my eyes",
this worry and concern for the other, crude and impatient and half-betrayed and
nevertheless powerful, this unconditional belief in love.
This is what all religion teaches. Whether it is the "Be perfect, as your heavenly
Father is perfect" of the Christian religion, or Allah questioning Moosa in my

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favourite Hadith:"...for forty years, I have provided air and water and food and
light to this unbeliever - and you cant share one meal with him?"
We dont really talk about it, at least not often. But 42 years of experience
make me think that all said and done, and all skills employed - the final success
we owe to our tenacious conviction that it is love which keeps the world going
- money is needed (though: too much money will spoil the team), but love
which has the other in focus and aims at empowerment, this love will make the
lasting difference in the lives of people, and thus is bringing a bit more beauty
and happiness into our love-starved world.
Our century has got an interesting lesson in how to make successful
revolutions: the only sustainable revolution I have ever seen was the
reunification of East and West Germany, no bullet shot, no window broken,
not one working hour wasted in strikethe victims of government violence
concerned for even the ones who tortured them in State-run prisonsit is just
that we need to have the courage to start, in our own small area of influence,
in the hope that we are building, with thousands of others of good will, an
alternative world.

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