Her story
was simple. She had leprosy for many years, taken treatment and
stayed in her home because her husband was the village leader.
He believed it was his responsibility to care for her against
the social norms of the time.
He died and the village turned her out with the threat that, if
she didn't go, they would burn her house down.
She left
alone and her married family stayed behind in the village.
In the
same colony a year later a woman came in while we were distributing
rations. It was mid summer and simply too hot for the old people
to go begging. This was long before we started a programme of
custodial care by having people sponsor the aged.
At the end of the long queue an argument started. I stopped helping
the two paramedics weighing out rice to see what had happened.
The argument was about this woman who had been in the colony for
a couple of weeks and was not on our register. The elders of the
colony had said that she couldn't get a ration because they feared
that one extra would mean a fraction less for them.
Life in a leprosy colony is tough - Life in India for the poor
is tough.
She argued that she had a piece of paper like them. Everyone had
been issued with a ration medical card. She did have a piece of
paper. It was a hand-written notice certifying that her husband
had divorced her because she had contracted leprosy.
In the
same year I watched from a small first aid post we had constructed
in a colony as a bullock cart wandered slowly down the dusty track
in the middle of the afternoon. The wind was hot and it had been
a long day dressing ulcers. I wasn't really in a good mood.
The cart creaked to a halt and a woman slipped off the back and
squatted on the ground. Three men climbed down and came over.
They announced they had decided to send her away as she had leprosy.
They of course said they were doing a kind deed bringing her to
a colony instead of simply sending her away with nothing.
One man was her husband, another was her eldest son and the third
was from the lowest caste in the village. It had been his job
to help her climb onto the cart.
They nodded when I asked if the 'well conditioned bullocks and
cart were theirs. They smiled with pride.
Something cracked inside me. I had the colony men drive the three
of them out of the colony without their bullocks and cart.
They went to the local police station and tried to register a
case. A lone constable came to the colony, or should I say as
near as he dared; to the path leading to the colony. I told him
that indeed the colony did have a cart and two good bullocks and
that two men had come into the colony and tried to steal them.
Did he want to come into the colony and verify it all?
The police inspector saw me in town that night and stopped me.
We made a deal that the cart and bullocks should be sold within
three days and that I should report that there were certainly
no bullocks or cart in the colony.
The proceeds built the outcast woman a small mud-walled hut with
a grass roof. Majji lived there in the colony for almost twelve
years. She died in 1996.
I don't know how often she smiled, but whenever I visited the
colony she would nod and smile as I passed her hut.
It
was during this time that I was employed to visit 13 leprosy colonies
to see more than 2,500 patients on a monthly basis. Things seemed
to happen when I was in the colony. I know these experiences have
influenced the policy of our Trust to adopt an 'open door' approach.
One cold winter's morning I cycled from the town where I stayed
to five surrounding leprosy colonies.
The turn
into one colony was at a junction on the highway. There was a
tea shop on the corner where I went each month. The owner asked
me where it was that I went when I visited. I told him 'To the
leprosy colony down the road'. He did not smile.
After that, whenever I stopped he would take a cup down from the
top shelf and wash it out with hot water before pouring my tea.
When I had finished he would pour hot water over the cup and place
it back on the top of the cupboard.
The fear associated with leprosy is not something that is described
in words, but rather by the actions, of others.
One month
later I arrived at Jigabur leprosy colony. I was late because
the monsoon rains had caused a river to flood. Thirteen houses
in a small colony on the bank had been washed away when an embankment
upstream had broken.
We got no sympathy from the local government flood relief officer.
He considered it a blessing that the houses and people had been
washed away in the night as it meant they were no longer 'polluting
the river'.
I didn't
know what to say when a new patient appeared before me for an
ulcer dressing. I asked her name. She began to cry. She had been
warned by her family never to mention her name even when they
forced her to leave their home and village.
She showed me a two rupee note her husband had given to her. He
gave it to her with the advice that the best thing she could do
with the money was to buy rat poison for herself.
I am not
very fond of speaking at service clubs in India. I have the feeling
they are out of touch with the social fabric of our society. A
few times I have not been able to come up with excuses quickly
enough and have felt obliged to attend.
At one such meeting (it certainly wasn't at a Rotary Club), a
member asked if I could please visit his home the next day. I
knew by the way he spoke there was 'leprosy in the house'.
His brother's wife was in what I will simply describe as border
line leprosy trauma. She was pregnant with her third child. The
husband was a lawyer and the brother, incredibly as it seems,
was a doctor.
Money was not the problem. Their request was simple - could I
find a place in one of 'those places' where 'they' lived and build
her a 'nice place'. The end of this story is too sad for me to
write about, even after 15 years.
It is my
belief that if we can change the attitude of people in India towards
this now curable disease, we can make other social changes.
If we can change the attitude to a disease whose name strikes
terror just by its utterance, then getting other social changes
will be easy. This policy, this belief, is happening in areas
where we work.
Nowadays we see fewer and fewer people being turned away from
their families, their homes and their villages because of the
stigma associated with leprosy.
Some people
allege that young people become leprosy paramedics simply because
they can't get a job elsewhere, or because it pays reasonably
well (at least today it does).
I disagree, because you need to have a heart in the right place,
you have to have a depth of compassion and courage, to write LEPROSY
PARAMEDICAL on papers, that goes far beyond the negative comments
that some people
still make.
