The 'cursed' disabled boy and the people of the sea

  • 16 April 2015
Will, Lobu, Kabei

Off the southeast coast of Sulawesi's sprawling limbs, I experienced a warmth and sense of belonging that I knew I was unlikely to find again on my journey through the South Seas. However, in a village where people are defined by their ability to catch fish, I also discovered a traditional belief system that left its disabled people badly isolated.

I was staying within an area of ocean known as the Coral Triangle, presenting a documentary series called Hunters of the South Seas. Loosely taking in Indonesia, the Philippines and New Guinea, it is the most biologically diverse tract of ocean on Earth. As sea levels rise, and overfishing continues to take its toll on the region, I wanted to understand what life was like for those who still rely on the sea for their daily survival.

In the Indonesian village of Sampela, we had the perfect place to start. The Bajau are the quintessential people of the sea. They can dive to phenomenal depths on a single breath, for up to five minutes at a time, spearing their fish with homemade harpoon guns and using their exceptional knowledge to feed a community of 1,500 people. They hardly ever visit land, preferring instead to live at sea in a stilt-house village, but every Bajau man is expected to fish, and therein lies the problem.

Image caption Lobu's father, Kabei, is one of the greatest freedivers in the village
Image caption The fishermen dive for up to five minutes at a time

Lobu was with me every step of the way during my stay. He is infectiously enthusiastic, extremely cheeky, an irrepressible energetic and very confident 12-year-old boy. There was nothing that should have set him apart from any other village child, and given his father Kabei was one of the greatest freedivers in the area, there was every chance he could have also represented the absolute pinnacle of the Bajau hunting tradition. But that was not to be.

Image caption Lobu in his home, built above water

"It's from his mother's side. Her grandfather once beat the disabled and now this whole family is cursed," his father said. Lobu, almost certainly has inherited muscular dystrophy, a genetic condition that causes the muscles to gradually weaken, leading eventually to total disability and, in some cases, death. He was growing weaker before his family's eyes and was isolated from the village as a result of the local belief in the "curse". There is no cure for muscular dystrophy, steps can only be taken to alleviate the most painful symptoms. But in Sampela, where superstition rules and survival requires near superhuman physicality, he was both ripe for ridicule and considered to be a burden.

I had to get used to Sampela's "no holds barred" sense of humour. The first time Kabei saw my less-than-perfect physique, he joked that when I was ready to give birth I should go visit his grandmother, the local midwife. But Lobu's treatment was different. Among his circle of friends and family on his side of the stilt village, things were OK, but as we ventured together to the other side of the village the cat-calling was near constant: "Look how skinny he is!" "Don't touch him you'll catch his disease!" "Oh you useless boy, just look at your little legs!" "He'll never get a wife!" Lobu would show admirable restraint, ignoring the insults for the most part, but it was obvious it hurt him.

Image caption On a fishing trip with Kabei

Lobu likes to perform. Barely a day passed when he wasn't asking me to teach him some new trick, game or dance move. His ability to mimic and recall was incredible - mine, however, was not. Weakly, I showed him how to do the "big fish, little fish, cardboard box" dance, figuring he might at least learn some basic English at the same time. A few days later a local wedding party arranged for a generator and some speakers to be brought to the island for a disco. Lobu practically begged me to take him. "We can, big fish, little fish," he said, gelling his hair, practising his new moves and whitening his face with rice flour in readiness, as is customary in Bajau society.

Looking back part of me wishes I had seen what was coming. Drunks grabbed at his legs and arms, swinging him around on the dance floor wildly as everyone else watched on and laughed. I managed to get to him just as he welled up, but it was far too late by then. He had been publically humiliated and asked to go home. Kabei was waiting by the doorstep, almost knowingly. "I feel tired Will," Lobu said, wiping away his tears without his father spotting. "It's best if I stay here and rest, I think." I was absolutely furious. As foolish as I now felt for taking him to the disco in the first place, I was just as annoyed that I even had to consider the idea that a 12-year-old boy would face a barrage of abuse for wanting to go dancing with his friends.

Lobu was only a toddler when his parents noticed the first signs that his muscles were beginning to waste. Since then they have deteriorated to the extent that he struggles to walk and get up in the mornings. He does manage during the day and can swim when helped, but when all his peers are leaping off the warren of boardwalks between their homes, and catching octopus with their bare hands, he understandably feels left out. At night he would groan and cry out in pain, often waking up writhing in agony. "One day Lobu won't be able to walk at all," confides Kabei. "I can't expect him to provide like the other men. I'll have to provide for him, and pray his younger brother isn't cursed too." Two-year-old Nopal waddles across the wood flooring, blissfully unaware of his extra responsibilities.

For people living with impairments in subsistence societies, the outlook can be very bleak. In the past decade of travelling back and forth from this area I have met plenty of other disabled children facing up to the same reality. There are daily physical barriers preventing them fulfilling their potential, and additional deeply ingrained cultural prejudices to negotiate as well.

Image caption Lobu (second left) with his family

What was particularly frustrating in Sampela was that the community was not so cut-off that Lobu couldn't have developed other skills away from fishing. Lobu made a token effort at the local village school before he ran off, but Kabai believed there was no point forcing him to go back. I argued that at least in school he might be able to gain some skills to get him away from the "fish or die" mentally, but Kabei disagreed completely saying. "School is useless, none of my family have ever been," he said. "The sea is all we need."

Here 30% of the village attend school but only 1% of the children actually make it to the end of their studies. Kabei later admitted it would be an embarrassment to take him. The school was on the far side of the village, and as Lobu's condition worsened, Kabei would have to carry him there in front of everyone.

Traditional Bajau beliefs are centred on the idea that Ibu Laut, literally Mother Ocean, will always provide them everything they need. When she doesn't, it is not due to the illegal fishing, coral bleaching, or dynamite that blights these reefs, but because she is angry with the community. Fish catches were on the decline generally, and I felt Lobu could be something of a pioneer within his family, providing an income that wasn't so dependent on such a fragile system. "The only way Lobu can be helped now is if we sacrifice a chicken as a gift to the ocean," Kabei says with finality.

On my last day in the village, I broke a promise I had made to myself going into this, my first television series, as a presenter. I had decided that, no matter what, I would not ever impose my opinions on others, that I was there to observe and not judge. But as the boat arrived to take me away for good I had a change of heart. Rightly or wrongly, I told Lobu that he had more to his life than being the punch line of the village. Leaving Kabei and his family was one of the hardest thing I have had to do, but, through many tears, Kabei grabbed my arm as I boarded to go: "Do not worry about Lobu. He is my son and I love him. I would never abandon him, no matter what happens."

Will Millard is a writer and explorer and the presenter of Hunters of the South Seas which will be broadcast on 19 April at 21:00 BST on BBC Two.

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