If academic Slamet Thohari can get his way — and he often does — then the last three words of “United Nations International Day of Persons with Disabilities” would be shortened to “the Difabled”, or “Difabel” as he spells it, meaning people with different abilities.
“It’s important to recognize that someone who is handicapped in whatever way should not be treated as though they don’t have a place and a role in society,” said the wannabe neologist.
“I think ‘disabled’ is a kind of rude term. We need to see the person, not the problem, as they say in Australia.”
That’s the country the 32-year-old activist will be heading to soon if everything has been sorted out.
His thesis will compare the way the handicapped are treated in Jakarta and Manila.
“Both are very crowded cities where it’s difficult to move around,” he said. “I’ll be looking at legislation and access and a host of other issues, including religious and cultural attitudes.”
Thohari shouldn’t have trouble adjusting — he already displays some of the don’t-bother-me-if-you’re-not-serious attitude often found among Western change makers.
It’s a behavior he probably refined during a two-year stint at the University of Hawaii while studying sociology on a Ford Foundation Scholarship.
Gone are the basa-basi (polite small talk) rituals that often turn Indonesian meetings into circular marathons. This man is on a mission and if that offends, well tough. Life’s too short to pussyfoot around when the cause is just and the need great.
Surprisingly, he’s not too keen on following Western models of support for the handicapped. “The motivation overseas is to make people independent,” he said.
“Here in Indonesia we have a different culture. We want to share. We don’t want to be alone. We work together. Improving human rights needs to take into account local wisdom.”
Thohari’s approach has clearly been successful.
Last year Malang’s Brawijaya University opened its spacious purpose-built Pusat Studi dan Layanan Disabilitas (PSLD, or the Center for Disability Studies and Services) on the ground floor of the Rectorate, the most prestigious building on the state university’s campus.
Here, students get support from staff, and facilities to allow them to compete on equal terms with their 30,000 fellow undergraduates, the ones who seldom have issues jumping drains, skipping over curbs and running up the stairs of high-rises without lifts — hazards built by thoughtless planners.
PSLD provides extra lecturers, volunteer helpers for those with mobility problems, Braille readers and other resources.
There’s ample flat, open space for wheelchairs and room to walk if you need to swing a crutch without cracking the shins of passers-by.
This is a particular requirement for Thohari, a victim of polio (“the disease hasn’t been eradicated in Indonesia — it’s only dormant”), meaning he has one useful leg.
Logically, this has nothing to do with the rest of his body or intellect, any more than baldness, batwing ears or buck teeth make one brainless.
Yet, assuming one physical difficulty impacts on other abilities is a common fault in communities everywhere. This is why the UN still thinks today is necessary.
Abdurrahman “Gus Dur” Wahid was almost blind and suffered from other health problems. That didn’t stop him becoming the Republic’s fourth president. Didn’t that focus attention on the handicapped?
“Yes, but it wasn’t followed up after he lost office in 2001,” said Thohari.
Like most modern advocates for the disabled, he wants everyone to get a normal education. “Special schools tend to provide learning that doesn’t recognize an individual’s cognitive skills,” he said. “Often they just teach craft.”
“When they leave, students are faced with a double handicap — their knowledge isn’t up to scratch. Few handicapped people get a tertiary education.
“Now every year Brawijaya allows 20 determined students to enter without having to go through the normal examinations.”
The old metaphor of likening the speed of bureaucratic action to the melting of a glacier is as apt in academia as it is in government.
To have persuaded Brawijaya to spend serious money on creating, fitting out and funding the PSLD, plus altering the entrance rules, proves Thohari’s persuasive skills. He credits others, particularly former rector Dr. Yogi Sugito, as being vital to the achievement.
“The breakthrough came in 2012 with an international workshop on campus called Towards Inclusive Education for Universities in Indonesia. It was co-sponsored by the director general of higher education. Key people attended and responded to what they learned.
“Laws were passed allowing money to be spent on facilities like the PSLD, which may be the best model in the country for others to follow. Once legislation is in place, public servants feel more relaxed about doing something differently. This is part of the secret to getting things underway.”
So does a political career entice? The answer was swift, sharp and uncompromising: “No. I want my own life.”
Thohari’s father died when he was 10. His mother, who had eight children, sold snacks for a living and piggybacked him to a normal school. She helped fund his studies at Yogyakarta’s Gadjah Mada University (UGM) where he studied philosophy between part-time jobs.
He also became an advocate for the handicapped, having learned about discrimination without having to attend courses other than those provided by life. After returning from Hawaii, he moved to Malang.
“Yogya had become aware of the issues facing the disabled,” he said. “At that time Malang was not so enlightened.”
One of his first stunts was to organize a demonstration in front of the Town Hall. Disabled people released thousands of birds to illustrate the freedom they needed to access public services.
He was offered a lectureship in the department of sociology and became the secretary of the PSLD. But he still works with NGOs and retains his membership of a motorcycle club where 70 handicapped people meet.
Thohari outlined four ways of looking at disabilities.
In Javanese tradition the handicapped are seen as gifted people.
Under Islam those who are different are considered objects of charity.
Then, there’s the medical model, and finally the social position, where a disability is socially constructed with the dominant group determining who is “normal”.
He said that Javanese culture believed the disabled had inherited magical powers. In traditional parades midgets were portrayed as superior beings with psychic abilities, like predicting lotteries.
In the wayang (shadow puppet) performances and serat (Javanese classical literature) the disabled are superior and powerful. The disfigured divine clown Semar is also the wise character and guardian spirit of Java.