© Duncan Graham 2007

Thursday, April 12, 2007

On 30 March in New York Indonesia signed the UN Convention on the Rights of Persons with Disabilities.
This means Indonesia and the other 80 nations who signed, will have to pass legislation to improve disability rights and scrap anything that discriminates against the handicapped. So far only 45 countries have such laws.
What’s the current situation in Indonesia? Duncan Graham reports from Malang, East Java:


When missionary Paul Janssen arrived in Kediri, East Java in 1951 he was shocked by the sight of so many handicapped children.

The 29-year old Catholic priest from the Order of St Vincent de Paul was no freshman from Holland, easily distressed by the squalor of Asia. He’d already served two years in China before being expelled by the communists, then four years in the Philippines.

But the lack of care being given to the disabled in Indonesia struck a new low. “The Dutch had left without doing practically anything,” he said. “They had very little contact with the local population. They were just interested in money.

“The priests and chaplains of the Dutch Catholic church were working with businesses and agricultural enterprises like the sugar factories. The handicapped were just lying about in the streets.”

There were many other problems. Malaria and a raft of other diseases. Infant mortality was high and many women were dying in labor. The system of puskesmas (community health clinics) had not been introduced. Doctors were few, particularly in rural areas.

Health care was left to those skilled in the use of traditional medicines – and paranormals.

Malaria (though not dengue fever) has now been eradicated from Java, but not the outlying islands. Puskesmas are widespread, though not always well staffed or equipped. Child mortality has tumbled, though still unacceptably high. And paranormals continue to be consulted, even by the well educated.

The maimed and disfigured are still visible in Indonesia, usually begging at traffic lights. But the numbers are small compared to half a century ago, according to Dr Janssen.

Back in the early 1950s he found his calling. It’s tempting to write that he got a divine message. However hopes of embroidering this story by reporting a sudden vision were dashed by the pragmatic priest, though he modified his denial by adding: ‘Not directly.’

The indirect influences came through the books of French Canadian philosopher Jean Vanier, the founder of L’Arche (the Ark).

This is an international organization that sets up communities where disabled people and their carers can live, work and learn together.

At the time medical authorities in the West believed that institutional care was the best way to handle the handicapped. It was reasoned that in one place they’d get access to top medical attention in controlled surroundings that could be well maintained.

It sounded good, particularly for the doctors, but a couple of essentials were lacking; love and individual care. Dr Janssen noticed that despite the problems and the pain, villagers in Java had “a very intense community spirit.” They cared for each other but didn’t have the resources.

While in the Philippines he undertook nursing training – along with a doctorate in theology and a masters degree in social psychology. In Java he promoted the philosophy of community based rehabilitation.

This means people have to get the energy, skills and knowledge to improve themselves, not wait for governments to come along and do the job. It also embraces empowerment, getting education and ideas, being able to read and write, believing in the human spirit and the right of the individual to enjoy his or her place in the world.

These ideas don’t always appeal to governments, particularly centralised and authoritarian administrations.

The village where Dr Janssen lived was poor, but stable. Rice was cheap and the people survived. But those with handicapped kids were being broken by the huge burden of children who couldn’t look after themselves. He proposed a separate house where the children would have continual care – and be educated.

“The parents agreed,” he said. “What could they say? Their situation was hopeless. We had about a dozen children in that first home. They didn’t care that I was a Catholic – their only concern was that their child would be loved.

“The model we established then is the same as the one we have today and the reverse of the Western institutional system; let us keep disabled children at home as long as possible.

“The love of your neighborhood is greater and more intense than the suffering you will endure through ill health.

“Hospitals are for the sick, but the disabled are not sick. They made big mistakes in Europe, the US and Australia by building institutions. These grand buildings are now empty because they’ve realized community care is more effective.”

To stop this tale from becoming a tome it’s necessary to whizz through the next few decades. These included Dr Janssen being shifted to Madiun (in the west of East Java) to develop Catholic tertiary education, a falling out with his superiors who considered his interest in the disabled “a hobby”, and a move to Malang in 1959.

This came about when his project was visited by a group of German doctors and journalists who were so impressed by his work that they offered big sums through a charity.

But European laws governing the separation of church and state meant money could not be given to an ecclesiastial organization. So Dr Janssen quit his job and started a secular charity called Bhakti Luhur (supreme service).

Bhakti is a Sanskrit word that has its origins in a Buddhist movement in India during the sixth century. It is also a Hindu devotion. This holds that when love is greater than bad things, then the bad are eliminated.

When challenged that he should be upholding Catholic principles Dr Janssen replied: “Catholicism is very close to Buddhism. In the basic points we are the same.

“We should stop paying attention to the differences and look for the similarities. The problems of pain and suffering are identical, whatever your religion. I also believe in karma.”

But weren’t there government concerns that another agenda was being run behind the medical and social care, that there was a plot to Christianize the kids? As a Dutchman in post-Revolution Indonesia he must have been hated.

“I have never experienced hate,” he said. “I’m not interested in conversion – only care. In my experience the Dutch are not disliked.”

But they are soft targets and in the early 1970s Dr Janssen was accused of being a subversive by a minister in the Soeharto government. He was questioned
by the army for a day, then put under city arrest.

However he drove to Surabaya where he had good contacts that led straight to the president through his wife Ibu Tien Soeharto. The allegation was dismissed as a “slip of the tongue” but his community development training had to stop.

“Don’t ever expect to be accepted by governments,” he told his supporters. “The poor have to be kept poor. The small fish have to be kept small so they can be eaten by the big fish.”

With all energies now focussed on the disabled and with support from UNICEF and other overseas agencies, Bhakti Luhur expanded. There are now 75 centers across the archipelago, with more than 40 in Malang which remains the national headquarters. It is said to be Indonesia’s largest non-government organization caring for the disabled through community programs.

About 4,000 disabled kids are now getting intensive care and education, usually in small units where the carer-child ratio is about 3 or 4 to one. “But there are at least two million disabled kids across the Republic who aren’t getting care,” Dr Janssen said.

“They have a right to education in normal schools. Integration, not isolation. They have a right to employment in normal jobs. They’re not getting this. That’s a big problem.

“But there is now an awareness of the disabled and their needs. This is a beginning.”


Unlike many Western nations where qualified carers for the disabled are hard to find, Indonesia seems to have no shortage of eager workers.

They are trained by Bhakti Luhur for three years and then have to work for a further four.

Maria Yuli, originally from Lampung in South Sumatra, is just finishing her training. All her charges are handicapped – some seriously with terrible birth defects. Many of her colleagues are also disabled, but the confident and pretty 19-year old, has no qualms about her career choice.

While her former schoolfriends are either studying or working, and hanging-out in shopping malls with their handphones, Maria is dealing with the downside of life. Imagine handling a child born without an anus.

In other nations where governments provide free surgery many birth defects could be corrected. A Singapore charity has been sending doctors to help with short-term training, but operations still cost big money.

Most funding now comes from personal donors abroad (mainly Holland) who ‘adopt’ a child for 250 Euros (Rp 3 million) a year, and are kept up to date on his or her progress by mail and the internet.

“Before I was introduced to this place by a friend I’d never thought of the didsabled,” Maria said. “It wasn’t an issue I’d ever considered. I knew nothing.

“I was surprised and wanted to know more because there are so many different disabilities. I felt compassion. I wanted to help.

“If I get married I could only look after my family – but here I can help care for so many more children.

“At first I missed the life that my old friends were experiencing, but I adapted quickly. I have my parents’ support. I think I have a calling from God.”


Late last year Dr Janssen – an Indonesian citizen for the past 15 years – was awarded a medal by President Susilo Bambang Yudhoyono. He was given Rp 8 million (US $740) and told to keep doing a good job.

Not so easy when you’re 85.

When an interview has gone well most people farewell each other by promising – though not too sincerely – to stay in touch.

But Dr Janssen did not say: “Let’s catch up later.” On the contrary he’s sure we won’t meet again.

There are awful secrets under his loose shirt. He’s had a heart attack, open heart surgery twice – so many operations that more are iuadvisable. Now he has an enlarged prostate and believes he has colon cancer, but is hesitant about having his diagnosis checked.

He’s giving himself maybe three months more. Despite this he stays active between 5 am and 11 am and remains cheerful, preparing a successor.

Early in the interview he said the Dutch left Indonesia “without doing practically anything.” That charge won’t stick on Paul Janssen.

So we smiled, shook hands a little longer than normal, did a bit of bloke back-slapping bonding, wished each other well and said: Good bye – and thanks.


(First published in The Jakarta Post 10 April 07.)

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