An interview with a Leper Child in Bali

An interview with a Leper in Bali.

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Faceless in the Crowd – an interview with a Leper child in Bali by Mark Ulyseas.

In Gethsemane: Transcripts of a Journey

This story has not been written to “frighten” away tourists. But simply to tell a story about people that people forget. About children of a lesser God – the lepers of Bali.

Many of us have come to this island to suck the elixir of eternal youth: our notions of living life to the fullest often regardless of the people around us. Just once let us hold the hands of those afflicted with leprosy to help them live a life and to die with dignity.

Often ignorance is an excuse for bliss. But it could also be a way of living in a fool’s paradise. Bali is much more than a paradise. It is and will always be paradoxical: The Yin and Yang controlling the life tides of ebb and flow. We must respect all living beings on this island. So read this story and after doing so let us all walk out of the door and start giving back to Bali what we have taken for so long…Life.

When I was confronted by the thought of actually meeting and talking to leprosy patients I was a bit circumspect about hygiene and worse still being confronted with ugliness amidst beauty. As an Indian who had worked at Mother Theresa’s Home for the Destitute and Dying in Calcutta in the ‘70s and who faced death there every morning, the “leprosy problem” as some so succinctly put it is not really a problem. It is a misplaced common human reaction to a disease that has been the scourge of mankind since time immemorial, but which is easily curable!

Being from a country that has (I presume) one of the largest populations of lepers, I am surprised at the adverse reaction I have received when I have spoken to residents on this island. Surprisingly this has not come from Balinese but from expats who have business interests here and also from international clubs. The most common remarks have been:

“This is Bali, it’s beautiful why are you talking of ugliness we don’t want to see it”.

“Come off it seriously there are no lepers on Bali…”

“You can’t talk about this it will drive the tourists away. Bali doesn’t need this now”.

“You Indians always want to talk of poverty and disease…get real”.

Yes I did get real. I talked to my Balinese friends who were gracious and most helpful in taking me to parts of Bali that many have not travelled to meet with motley ragged scattered bunches of lepers living on the outskirts of humanity. This journey took me to my soul and I beg to ask the question, “Is there a God?”

Driving from Seminyak to the ‘other part’ of Bali along dusty village roads to far-flung hamlets it was like searching for an elusive tribe. No one wanted to speak about them. No one acknowledged them. Yet they existed in their filthy clothes, smelling of rotting flesh and worse still the children. In their eyes bore testimony of a generation lost because of ignorance and fear, fear of the unknown and fear of becoming like them.

When I entered an area made up of a few coconut huts I was confronted by a group of ragged adults and children. As someone once said, “The eyes are the windows to the soul”. All I could see were their eyes that stared into oblivion in a catatonic like trance with a hint of hope…hope for succour.

Walking up to a young child and introducing myself with an outstretched hand I received a hearty handshake from a stump of a hand and a smile that dispelled the gloom.

“What’s your name,” I asked?

“Kadek,” the child replied in a tiny voice.

“How long have you been living like this?”

“As long as I can remember. I don’t feel anything in my hands and feet. You have any food? I’m hungry.”

I hadn’t brought any food but after rummaging in my pockets I found half a roll of Mentos, which I promptly gave him. He put it to his mouth and began peeling the wrapper away. In seconds he was munching the sweet while grimacing. Perplexed, I asked him why?

“My teeth hurt.”

Suddenly the motley group turned their backs and started walking down the path towards the road. A few metres away they stopped and waited for a second and then raced forward. I ran after them curious to see what they were doing. Turning the corner I saw them bending over plastic packets.

It was food and water left by the villagers.

Back at the “camp site” they shuffled around laying a tattered cloth on the ground. They sat down and began eating. I declined their invitation to join them.

Kadek suddenly got up and held my hand.

“Why aren’t you eating?”

“My teeth hurt!!”

“Oh okay. Then if you’re not eating why don’t you show me where you sleep?”

Kadek gently held my hand and guided me to a small coconut shelter that I presumed was used for cattle. It was his home. Open to the vagaries of nature this was his room. On the floor of covered with tattered cloth lay bits and pieces of colourful empty packaging of detergents.

“Why do you collect this?”

“I want to be an artist.”

Watching his stump of a hand waving around while he talked and the glimmer of life lurking in his eyes I wanted to carry him away from all the sorrow and pain.

“At night the animals and insects come to me. But I don’t feel anything. I wish they would go away and let me sleep”.

“Do you have any friends to play with?”

“Yes in this group but we have no toys. And we can’t go to the village to play with the children there. Most of the time I like talking to the trees. They are my friends. Only at night they make a noise”.

Suddenly silence blanketed us and for a moment time stood still. Then life returned with a gust of breeze. Probably it was the angel of death reminding us…

It’s noon and with the warmth of the sun the flies returned buzzing around us like hungry creatures. Fortunately Made returned from the village to escort me back to the car. I wanted to run away and hide from humanity.

I made my farewells and promised to return with crayons and paper for my little friend.

And yes, food too.

Kadek stood at a distance and gazed at me waving his little arms and grinning like a Cheshire cat.

“Suksama,” he shouted

“Dhanyavaad,” I replied folding my hands and bowing ever so gently. And under my breath I whispered, “I wish you well my dear Kadek”.

Back at the car I meet a few villagers whose relatives I had just met. They enquire about their wellbeing and apologise for having ostracized them.

“What can we do? We don’t want to get the disease.”

I tell them it’s curable.

Their doubtful looks are not encouraging.

One unnamed health official tells me that the government has been fighting a battle educating  people, timely detection of the disease and medical help. Though the local communities do their  best it is still short of what is required. They need sufficient funds for medicines, nurses and doctors. And more importantly a program to educate the people.


© Mark Ulyseas – Sections of this article appeared in my column Paradox in Paradise in The Bali Times, Bali, Indonesia in 2007. It is 2015 and news reports keep trickling in…

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