KEEP REMOVING BARRIERS

A stroke of ill fortune

There nothing quite like a family tragedy to put the plight of the disabled into perspective.

If you and your loved ones have escaped misfortune consider yourself lucky – and pause to ponder the situation of others.

If that’s too onerous a task for everyday, just set time aside tomorrow (Mon 3 Dec) for the International Day of People with Disabilities. 

This year’s theme is Removing Barriers.  There’s no shortage.

Like millions of others, my brother-in-law and his immediate family wish they could squash a year of distress into just one day.

My BIL only partially fitted the profile of a stroke victim:  No spare flesh, under 55, not diabetic, doesn’t smoke (but used to), eats frugally, though not always well.  He’s been a stranger to doctors and a splendid armchair sportsman.

One morning last year he was ambushed and felled by a tiny arterial obstruction.  Had he got to a modern hospital within four hours and been injected with the new wonder clot-busting drugs he might now be fully active.

Instead his recovery has been incomplete.  That he’s now out of a wheelchair and can shuffle down the street almost unaided is a tribute to his determination and the perseverance of close family and friends.

The disabled share their suffering. Stroke victims aren’t easy to handle.  They often get uncontrollably emotional over the smallest issues, losing temper, straining relationships.  Arm and leg lifting exercises tax patient and helper because progress is measured in hair widths and never guaranteed.

At times like these families should demand hospitals give therapists and nurses the sort of salaries reserved for directors.

Tried pushing a wheelchair along an Indonesian sidewalk?  Civic authorities clearly haven’t, or there wouldn’t be steep kerbs and black holes big enough to swallow chair and carer.

Ever relied on the stability of a crutch to keep upright?  Then you’ll know about fearing fractured footpaths and curse the unthinking who park across pavements.

There are supposed to be laws insisting on disabled access to every public building. Take time tomorrow to check the ramps, lifts and door widths around your office. 

Then count the number of handicapped in your workplace.  It’s supposed to be at least one per cent.  It probably isn’t. Ask why.

Because Indonesians are curious and friendly people, convalescent exercises in public become chatterthons revealing the huge number of families in similar situations.

These encounters can be depressing if dad died, therapeutic if uncle bounced back and is now a gymnastics champ.

There are no accurate statistics for the number of stroke victims in Indonesia but the indicators show more than four million new cases in the Republic every year.

Sounds too few.  Those who’ve cared for a victim soon pick the familiar signs in the streets – the half-raised hand, the one-foot drag, the crablike movement, unwiped spittle and slurred speech. Such people seem to be everywhere – and they’re the survivors.

Strokes kill.  If they fail first time, like political candidates they often try again. At least one in four will be thumped anew, usually within five years.

Drug companies claim strokes are now the number one cause of death for all non-communicable diseases.

What does all this mean to those of us who haven’t felt our chests suddenly gripped and crushed by a giant hand and experienced the icy press of mortality competing with the sweat of terror?

Recognize the symptoms.  Rush to hospital; better to lose your dignity if it’s heartburn than your life if it’s not.

Reduce the risks. Keeping blood pressure down is vital, say doctors.  So is exercise and eating low cholesterol foods. Smoking is not an option.

Apart from wishing a speedy return to normality for victims and families, here’s an appeal to every legislator and civil engineer: Consider the handicapped in your plans.  Just a little care and forethought can make a difference in the lives of those less nimble.

But hey, wait a minute: A decent society is measured by the way the less fortunate, the distressed and disadvantaged are treated.  Do we really need a United Nations day to make us do something that should come naturally?  

(First published in The Sunday Post, 2 December 2012)

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KIWI'S CONCERN CREATED YOGYA'S YAKKUM

Maria Widagdo
Helping the handicapped help themselves Duncan Graham

When overseas donors meet the health care needs of Indonesians, does this free the government from its duty to provide for its citizens?

That’s one of the questions concerning Dr Maria Widagdo, director of the Yakkum Rehabilitation Center just outside Yogyakarta.

Another is whether the tiny input from the government – less than one per cent of the center’s running costs - indicates an indifference to the needs of the disabled and therefore a reflection on the national character.

“Of course I want the government to take more responsibility, but I’m not critical,” she said. “They do their best and there are many good people. They don’t have enough money in the social welfare budget.”

When reminded that there always seems to be enough money for politicians’ needs and comforts she sighed but refused to be drawn. No country is immune from hypocrisy and her job means she has to be diplomatic, flexible – and tough. A tricky trifecta.

Fortunately she’s well equipped to negotiate the labyrinth of Indonesian bureaucracy and the complex demands of aid agencies.

Although Yakkum is a faith-based organisation (the name is an acronym for a Christian foundation) it doesn’t proselytise and the overall impression is that it’s a secular show. If there are crucifixes and bleeding hearts around they’re well hidden. Most clients are Muslim and Dr Maria (a Catholic) brushed aside suggestions that there might be discrimination in the provision of services.

“We care for people in need,” she said. “Their religion is immaterial.”

Big donors attach conditions to their grants. Most want the outcome to be a return to the community (see sidebar). They don’t want Yakkum to become a sheltered workshop, so much rehabilitation work is done in the villages.

The overseas donors include NGOs and government agencies in Germany, the US, Holland, Australia and New Zealand

Yakkum’s prosthetics factory turns out limbs and adapts bicycles and motorbikes to give the disabled mobility. It also has a small factory employing 15 producing wooden toys and artwork. Some handicrafts are exported.

Donors that insist on including Bible readings or services as part of the deal are given the flick. “I want to show love, but not that way,” said Dr Maria.

If part of the deal is fiscal accountability, no worries. Dr Maria said administration costs take 15 per cent of the budget and potential donors can scrutinise an audit of the agency conducted by an independent Australian accountant.

“I’ve lived in Australia so I know how people overseas are aware of Indonesia’s reputation as a corrupt country, and that affects their attitudes to donations,” she said.

Yakkum was started in 1982 by an inspirational and driven New Zealander, Colin McLennan. On a visit to Yogya to take part in a Boy Scout jamboree he was distressed by the number of disabled and aimless kids he saw roaming the streets.

“The sight shocked him because he’d never seen anything like this in NZ,” said Dr Maria. “It really touched him and he became obsessed. He met another man of good heart, Pak Parjono, who was an amputee who’d been bitten by a snake.

“He became Yakkum’s first client and staff member. They made a formidable team and together they started collecting kids and helping in their rehabilitation, first as an outpost of Bethesda Hospital.

“Colin (who died in 2007 aged 73) went back to NZ and returned with money he’d raised and established a separate legal organization.” A wall plaque at Yakkum recognises his life. It reads: ‘A New Zealander who cared and made a difference’

From this small start Yakkum now has a major complex where they’ve helped about 9,000 people to build skills and live independently. Following the 2006 Yogya earthquake Yakkum was turned into an emergency center treating hundreds of wounded.

People suffering fractured limbs and spinal injuries filled every available space for about two months. At the time Dr Maria was running the clinic with other doctors and nurses.

The skills they developed are now being put to use in Padang following the September earthquake. A team from Yakkum has set up an emergency unit in the stricken city. It’s also running a center on the island of Nias where thousands were killed and injured in the 2004 Boxing Day tsunami and an earthquake in March 2005.

Dr Maria, 43, was born in Semarang in Central Java and graduated locally in medicine. She was the first person in her family to attend a university, pushed by her working-class parents who were determined their children should be well educated.

Later she followed her engineer husband Sugianto Pudjohartono to Australia when he won a scholarship for higher study. Bored at home she volunteered to assist at a hospital. Her dedication impressed and she was given a research grant.

Eventually she gained a doctorate in geriatric medicine – an accomplishment she plays down with a practised one-liner: “It’s not the degree that counts – it’s the quality of the person.”

“Fear of Christianisation is still a factor that makes some people reluctant to seek help,” she said. “The idea that the birth of a handicapped child is the result of a curse from God is still around, particularly in the villages.

“I’ve learned a lot in this job and particularly that culture is stronger than religion.

“People feel ashamed and try to hide their children. We want them to be able to take their place in the community working to provide for their families because work brings independence and dignity.

“I just don’t know how many handicapped people are out there and unable to use our facilities. You don’t see the polio victims that caught Colin’s eye years ago, but it’s clear that the majority miss out. Apart from accidents and injuries many suffer from cerebral palsy. ”

By the standards of other Indonesian medical facilities Yakkum is reasonably well equipped. It has spacious grounds and a purpose-built factory, workshops and substantial living quarters, all developed on a block of vacant ground.

“Overseas volunteers are welcome, but ideally these should be established professionals in areas like Information technology, physiotherapy and administration,” she said.

“They need to be self-starters because it takes energy to maintain learners. We want people with good hearts – but not missionaries. Finding the right work for disabled people and matching their skills with employers’ needs is a difficult but necessary task.

“There’s a 12-year old Indonesian law that states companies must employ handicapped people - at least one per cent of their workforce. That’s not happening everywhere, so changing community attitudes is a great challenge.”


(Sidebar)

Mobile man

You can’t miss Suwuandi, 37, as he whips his bright red Yamaha motorcycle down the highway and not just because it has a sidecar.

He turns heads because he is small and his disfigured legs and feet are hooked around the bike’s splash shield. The sidecar is used to carry his crutches or passengers.

Suwuandi was born disfigured and spent 15 years at Yakkum before his ambition to be independent could be realised.

He adapted his motorbike himself and now works outside Yakkum making women’s accessories like handbags and belts. He is married to Erna Ekawati, 26, who is not disabled.

“I don’t want people to look down on me or discriminate,” he said. “Most don’t. I can now go most places unaided, including the mosque. I’m no different to anyone else – I just want to work and care for my family.”

(First published in The Jakarta Post 21 October 2009)

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